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Your day is about to get better.
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Welcome to Cool Change Podcast.
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Hosted by Chuck Allen, this podcast shares
captivating conversations that encourage
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you to reimagine your life.
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After all, you're going to make a change
at some point, right?
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Why not make it cool?
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Welcome to the podcast.
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Thanks.
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Yeah.
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You know, I have been thinking for a year
that it would be fantastic to get you on
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the show because most of my career I've
spent in the company of, or in the
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tutelage of very inspirational people as a
management, as a leadership consultant,
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and just having the opportunity to work
some really cool people.
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And among them,
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is my wife who we both know, Rilla, who by
many people's account is one of the most
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inspirational leaders that they're aware
of.
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And I totally concur with that.
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And what I think is so cool is that when
people ask Rilla, even a professional
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environment or a personal environment, who
are you inspired by?
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She always says your name first.
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She's like, let me tell you about Michelle
Huebner because she inspires me all the
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time.
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And so to be able to sit down and tap into
a little bit about what it is about your
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perspective on life that is so enamoring
to so many people is just a true honor.
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So I'm super glad that you agreed to come
talk to me.
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I'm excited to be here.
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So I want to jump in by asking you to
share a little bit about your journey with
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Friedreich’s ataxia, otherwise known as FA
and how it's shaped your perspective on
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life.
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You know, we probably need to start with
just a primer on what is it?
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What is it?
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Oh, it's a genetic disorder.
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Um, that affects like movement
coordination.
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It's kind of different for everyone.
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but the same, but different things can
attach with it.
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So a lot of people, it starts in their
legs and they just lose mobility.
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Then the nerves kind of don't function
well and then it can continue upwards, I
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guess.
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But there's, again, everyone has kind of a
different pattern.
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It's not like,
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the same imprint for everyone.
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So they say like a life debilitating
genetic disorder, I guess.
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That does not have a cure.
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That does not have a cure.
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Yeah.
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And most people are diagnosed with this
earlier in life.
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Earlier, probably when they're like six to
eight years old, they start having some
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symptoms.
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So typically a,
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pediatric neurologist would see these kids
and give them a diagnosis.
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There's only one way to get a diagnosis
and that's through a genetic blood test.
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And that's the only way.
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My symptoms started later, so I was 20.
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I was really active growing up.
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I think that kind of helped.
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I mean,
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Obviously if it's genetic and you're born
with it, like why would I have a
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difference in it than someone else?
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But there's these things called repeats,
GAA repeats.
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So in the DNA strand in I think 1996, they
found the actual genetic DNA that is like
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malfunctioning.
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or an error in the DNA.
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So it's GAA.
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If you have over 20 repeats of that gene,
you're abnormal and you probably have FA.
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So I say FA, a lot of people with FA say
FA, doctors, a lot of other people say
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Friedreich’s or Friedreich’s ataxia, but
FA is so much easier.
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Yeah.
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Um, especially if like speech is an issue
and slurring, right?
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It's just easier for FA.
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Um, see on one hand, I don't want this
conversation to be about FA because, um,
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you are, your approach to life, I am quite
sure would be at least as great as it is
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right now, even if you weren't afflicted
with this disease.
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I think it actually changed a lot of my
perspective.
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So let's talk about that.
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So symptoms started slowly at 20.
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I was just dizzy once in a while.
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Like, you know, when you're on a boat and
you get off the boat, you kind of still
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feel the motion of the ocean.
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I would feel that for probably like in my
20s.
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I felt like I was just off the boat
sometimes and like off, right?
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Just off.
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And then in my thirties, I say I moved
onto the boat because everything was
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always moving and like, I was so blocking,
but I would always like want to hold
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things just because I didn't really know
if I was moving or not.
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So just like that kept me feeling
grounded, I guess.
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Let's see.
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What was your question?
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Why did it change?
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Well, fast forward.
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So I was diagnosed at 33, probably 25 or
more doctors, because they didn't know.
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I mean, they're used to seeing it in kids.
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They thought in her ear, they thought all
these different things.
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They thought, MS, I just wanted to know
what was wrong.
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Like I knew something.
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I knew something was going on, but I
didn't know what.
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And the doctors.
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I'm not going to say they didn't care, but
they didn't necessarily care.
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They were like, just come back next year
and I'll watch you walk.
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And I was like, oh, wait, doesn't really
help me.
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Like, I want to know what, what can I
expect in the future?
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What, where do I fit?
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Where do I fit in this world?
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Like, I just wanted answers.
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And then when I got the diagnosis, I was
like, yay.
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I know what I have and I actually knew
when the doctor told me I was with my dad
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and my dad, I'm sure all parents are like
devastated by this news, like what do you
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have?
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And I was like, great, let's go home.
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I know what I have now and I know what
that is.
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And the doctor was like, you know what
that is?
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And my dad was like, you know what that
is?
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And I knew what it was.
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I grew up, one of my friends growing up,
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She had FA, her and her brother have it,
and we met in the third grade and I saw
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her struggles.
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She had the normal child onset FA and was
wobbly and walked against the walls and
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furniture.
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And probably middle school.
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I don't remember her being in a wheelchair
in high school.
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But I would see her every couple of years
in my twenties and thirties.
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And then when I got diagnosed, I saw her a
little bit, but it was, it was kind of
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hard at the time because she was very
progressed.
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She, she couldn't transfer.
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She had a hard time speaking.
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And by transfer, she had a difficult time
going from her wheelchair to normal
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seating or, or the toilet.
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Yeah.
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Um,
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she couldn't really do any of that
herself.
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So like, okay, I'm diagnosed.
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And then I see that and it's like, that's
going to be me.
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Like, you know, and it was just a lot to
take in.
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So, so on one hand you had dealt with
this, these symptoms for 13 years without
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knowing what it was.
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I mean, I can't imagine going that long.
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And then at the same time, finding relief,
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when you finally got a diagnosis, because
now you could name it, you could label it,
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you knew what it was.
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But at the same time, then you kind of saw
someone, ironically, that seems very
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strange to me that you knew that had F.
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Oh, it's one in 50 ,000.
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I should say one in 50 ,000.
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So in order, in order to get the typical
F.
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A.
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You have to have two bad genes.
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So you get one gene from your mom, one
gene from your dad.
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You have to have two bad genes in order to
get it.
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If you have one bad gene and you're just a
carrier, you don't exhibit any of the
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symptoms.
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So my parents, they didn't know.
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No one in my family has had it.
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And that's important to know.
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You have to have two bad genes.
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I think it's something like, I should have
looked at the math.
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I think it's like one in 200 people
actually are,
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carriers, but you have to have two in
order to have it.
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So when you think about FA and you think
about living with it, what comes to mind
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when you think about how it's shaped your
perspective on life?
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So, so immediately, because like, I'm sure
when everyone receives a diagnosis, they
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want to look at all these things.
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Like what's my life expectancy?
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What's.
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What do I have to look forward to?
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Like not look forward to, but you know,
what's in the pipeline, right?
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I don't think it's like broadcasted often,
but when I was first diagnosed, they said,
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okay, if you're a kid with this, your life
expectancy is 36.
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It was 33.
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You were 33.
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Yeah.
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So it was like, you want to go there?
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Just do it.
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So it was like,
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bucket list.
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Like it's hard to make a bucket list of
like things I want to do.
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I just do them.
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I don't.
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Cause you don't know what your expectancy
is.
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No one knows.
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It's not just me.
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It's no one knows.
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No one knows, but tomorrow.
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Right.
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So like, ah, I just want to do it.
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So like, I love your idea of the bucket
list.
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We had this conversation when I'm in the
car.
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Uh, it was,
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It was, there's a moment where we just,
uh, Rilla and I were riding somewhere with
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you and we talked about the concept of
bucket lists and what was on our lists.
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And we, uh, Rilla asked you and said, so
what's on your bucket list?
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And there was this kind of pause and
you're like, you know, I don't really have
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a bucket list.
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When I think about it, I just do it, which
is so true.
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Cause you had just gone bungee jumping and
you had.
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like five times in a row and you had like
in this huge Canyon.
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And then you went skydiving.
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You looked around until you found a
service that would take you skydiving.
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And it was kind of hard to find you had to
drive to get there in pretty good ways.
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And this idea that you don't have a bucket
list.
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You have an idea of the thing that you
want to do and you just do it.
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Therefore the list never takes shape.
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Like we suddenly were shocked and
stupefied by this idea that you could just
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think of this thing and then just do it.
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And it was.
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It was amazing.
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Yeah.
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Yeah.
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I mean, you never know how long you have.
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And I want to be able to do the things
that I want to do and enjoy.
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And if it comes to mind and I'm like, Ooh,
I like it.
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And then I feel like, like I'm going to
Morocco in a couple of weeks.
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So, you know, I thought about it, some
different things and it just, things
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really came into place and it was like,
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you should do this.
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You should go.
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And I found a really great travel agency
over there.
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And I was like, you know what?
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I can do this trip, a solo trip to
Morocco.
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That's what I'm talking about.
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Yeah.
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You know, who's jumping on a plane and
doing a solo trip to Morocco by
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themselves, especially given the
challenges of having to navigate a
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wheelchair and all of the intricacies and
complexities that come with solo travel in
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general, which are then amplified.
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You know, I trust the universe.
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Like, I know bad things are, not bad
things are gonna happen, but I know
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mistakes or little things that will be
frustrating are gonna happen and okay, I
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will learn from it.
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That's how life works, right?
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Like, you just learn from things and you
move forward and you don't dwell and...
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Despite these challenges, I mean, you are
known for living fully embracing
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adventure.
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Um, so I just mentioned that you've been
skydiving, you're heading to Morocco on
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the, you know, you've been bungee jumping
recently.
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What other adventures have you been taking
on on this fictitious bucket list that you
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just keep checking things off on?
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I'm going to totally switch gears and it's
a different adventure in my mind, but like
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more important.
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So I've done, so there's no cure for FA.
239
00:14:33,074 --> 00:14:37,414
The first treatment was just approved last
year.
240
00:14:37,414 --> 00:14:45,894
So I've done different drug trials to try
to try and find a cure, a treatment.
241
00:14:45,954 --> 00:14:49,234
And it's not for myself.
242
00:14:49,914 --> 00:14:53,874
I love my life.
243
00:14:53,934 --> 00:14:57,514
It's not like, oh, I can live once I have
a cure.
244
00:14:57,514 --> 00:15:06,134
Like, it's not really how I think, but for
the people that are younger or more
245
00:15:06,134 --> 00:15:12,934
progress, like I would like to help them
and I can help them.
246
00:15:12,934 --> 00:15:19,614
If, if I can be shot in the arm and with
drugs that just were tested in monkeys and
247
00:15:19,614 --> 00:15:21,674
I'm next, I'll do it.
248
00:15:21,674 --> 00:15:22,894
Cause I'm like,
249
00:15:22,894 --> 00:15:30,414
If I could be a part of this and like it,
it might kill me, but you know, it's,
250
00:15:30,414 --> 00:15:38,104
it's, it's not just about me and I want to
help others and, and it's not just FA.
251
00:15:38,104 --> 00:15:44,094
Like if, if, if they find something that
works for FA, that's going to also help
252
00:15:44,094 --> 00:15:49,294
the ALS with MS with all these other
things.
253
00:15:49,294 --> 00:15:51,954
Like that's really exciting.
254
00:15:51,954 --> 00:15:52,622
And.
255
00:15:52,622 --> 00:15:59,082
There's all kinds of treatments and the
pipeline and like different trials all the
256
00:15:59,082 --> 00:16:00,342
time with FA.
257
00:16:00,342 --> 00:16:07,572
So the huge nonprofit that I work with is
called Farah, cureFA .org.
258
00:16:07,572 --> 00:16:09,562
CureFA .org.
259
00:16:10,202 --> 00:16:18,042
They really work well with fundraising,
but they work well with the FDA, with drug
260
00:16:18,042 --> 00:16:19,062
companies.
261
00:16:19,062 --> 00:16:21,262
They want...
262
00:16:21,390 --> 00:16:26,650
things, drugs, treatments in the pipeline,
they want a cure.
263
00:16:26,670 --> 00:16:33,010
They work really well with FA patients,
with new FA families.
264
00:16:33,490 --> 00:16:40,530
When I was first diagnosed, there was a
bike ride in Portland called Ride a Taxia,
265
00:16:40,530 --> 00:16:47,050
and I think they have about six rides
around the US every year.
266
00:16:47,050 --> 00:16:49,998
And they did two in Portland.
267
00:16:49,998 --> 00:16:55,718
They've done one in Seattle, they did one
years ago from Seattle to Portland.
268
00:16:55,718 --> 00:17:00,378
And it just raises money, but awareness.
269
00:17:00,678 --> 00:17:05,957
And the huge thing that I love is it
connects people.
270
00:17:05,957 --> 00:17:08,838
So you're like newly diagnosed, like.
271
00:17:10,894 --> 00:17:14,354
One of my friends is 19.
272
00:17:14,354 --> 00:17:16,614
She was diagnosed at 11.
273
00:17:16,614 --> 00:17:19,674
I met her at the spike ride.
274
00:17:19,814 --> 00:17:20,154
Right?
275
00:17:20,154 --> 00:17:25,174
Like her family just received crazy news.
276
00:17:25,174 --> 00:17:28,154
And it's like they can meet other people.
277
00:17:28,154 --> 00:17:29,914
They can be involved.
278
00:17:29,914 --> 00:17:35,914
They can see like, ah, there's more to
this than just the sizzies.
279
00:17:35,914 --> 00:17:38,206
Like there's a community.
280
00:17:39,086 --> 00:17:41,726
It was like so important.
281
00:17:41,726 --> 00:17:45,066
And I know you are super involved in that
community across the country.
282
00:17:45,066 --> 00:17:49,456
Actually you travel and you go to
conferences and various things.
283
00:17:49,456 --> 00:17:56,146
Talk to me about the FA family and what
you experience and kind of what you mean
284
00:17:56,146 --> 00:18:00,166
to those families as best you can.
285
00:18:00,166 --> 00:18:01,226
Hmm.
286
00:18:01,226 --> 00:18:04,886
So it means autonomy.
287
00:18:05,166 --> 00:18:06,758
It really, it's like,
288
00:18:08,846 --> 00:18:14,486
Like this last weekend I was with my
friend who lives in Seattle.
289
00:18:16,785 --> 00:18:19,206
It's just kind of a funny thing.
290
00:18:19,206 --> 00:18:21,206
He has a wheelchair van.
291
00:18:21,206 --> 00:18:22,906
So there's a ramp on the back.
292
00:18:22,906 --> 00:18:31,206
So I was in the back of my scooter and he
was in his motorized chair.
293
00:18:31,206 --> 00:18:36,826
And then we're trapped around and like,
you know, like my face kind of hit the
294
00:18:36,826 --> 00:18:37,826
wall.
295
00:18:38,030 --> 00:18:40,890
And like he saw all of that in slow
motion.
296
00:18:40,890 --> 00:18:43,530
It was hilarious.
297
00:18:43,910 --> 00:18:44,300
Right.
298
00:18:44,300 --> 00:18:45,690
We're just laughing.
299
00:18:45,690 --> 00:18:49,990
And like the thing is, you get each other.
300
00:18:50,210 --> 00:18:52,670
Like we're all together.
301
00:18:52,670 --> 00:18:56,230
If we're all together, we all get each
other.
302
00:18:56,230 --> 00:19:04,238
If one of us laughs or falls down or falls
out of our chair or.
303
00:19:04,238 --> 00:19:06,518
Like no one even notices.
304
00:19:06,778 --> 00:19:08,738
No one even turns their head.
305
00:19:08,738 --> 00:19:11,578
They're just like, I get off the ground,
Michelle.
306
00:19:11,638 --> 00:19:15,378
Like it's comforting and like, it's just
normal.
307
00:19:15,378 --> 00:19:18,398
It makes it very normal.
308
00:19:18,958 --> 00:19:24,978
And just like these, they call it the
family.
309
00:19:24,978 --> 00:19:31,528
So FA in a family, FA is big for, it's
like your FA family.
310
00:19:31,528 --> 00:19:32,638
Yeah.
311
00:19:33,550 --> 00:19:36,990
It's like the first two letters of family
are the capital.
312
00:19:36,990 --> 00:19:37,150
Yeah.
313
00:19:37,150 --> 00:19:37,840
I've seen that written.
314
00:19:37,840 --> 00:19:38,460
Yeah.
315
00:19:38,460 --> 00:19:44,710
And it's like, you're all just almost like
related.
316
00:19:44,710 --> 00:19:47,870
You know, you have this strong bond.
317
00:19:47,870 --> 00:19:55,770
You get each other, you know, I'm, I feel
on the outside a little bit because like,
318
00:19:55,770 --> 00:20:01,550
I'm not the kids and I'm the parents age a
lot of times.
319
00:20:01,550 --> 00:20:03,278
So they're like,
320
00:20:03,278 --> 00:20:07,688
doing this at the kids' table or with the
adults.
321
00:20:07,688 --> 00:20:14,478
And I'm like, oh, so with the adults, you
know, like, I'm talking to say don't feel
322
00:20:14,478 --> 00:20:14,958
welcome.
323
00:20:14,958 --> 00:20:21,738
I feel very welcomed, but I just feel, and
hey, don't feel judged, isn't the word,
324
00:20:21,738 --> 00:20:27,158
but kind of, like, you're not like my kid,
right?
325
00:20:27,158 --> 00:20:30,158
So like, do you really have this?
326
00:20:30,158 --> 00:20:32,430
I don't know, but, but.
327
00:20:32,430 --> 00:20:36,990
Like I want to show them like, gosh, you
can still live.
328
00:20:36,990 --> 00:20:38,270
You can keep going.
329
00:20:38,270 --> 00:20:45,270
You can do things like I feel, I feel it
was perfect.
330
00:20:45,270 --> 00:20:54,590
I know it took a while to get diagnosed,
but like I got focused on raising a son,
331
00:20:54,710 --> 00:20:56,450
having a career.
332
00:20:56,610 --> 00:21:01,170
Like I didn't have a diagnosis where.
333
00:21:02,190 --> 00:21:05,070
I have the option to like give up.
334
00:21:05,070 --> 00:21:10,770
I'm not going to say give up, but kind of
like, you never took your foot off the
335
00:21:10,770 --> 00:21:14,470
accelerator because you didn't actually
have a diagnosis and you didn't know what
336
00:21:14,470 --> 00:21:15,110
it was.
337
00:21:15,110 --> 00:21:19,009
And you sort of continued into push and to
drive.
338
00:21:19,030 --> 00:21:19,410
Always.
339
00:21:19,410 --> 00:21:25,250
And I think like, for me, I think it
worked out exactly how it should.
340
00:21:25,250 --> 00:21:30,790
You know, if some people don't have kids
because they don't want to pass this on,
341
00:21:30,790 --> 00:21:31,686
well,
342
00:21:32,526 --> 00:21:39,166
I mean, okay, when I was first diagnosed,
I was like, oh my gosh, I have to get my
343
00:21:39,166 --> 00:21:42,206
son tested, like to see this.
344
00:21:42,206 --> 00:21:45,766
And then I was like, okay, I'm sure it was
a couple of months later.
345
00:21:45,766 --> 00:21:50,546
I was like, well, that would be dumb to
have him tested because then it would be
346
00:21:50,546 --> 00:21:53,486
like, okay, run faster, enjoy it.
347
00:21:53,486 --> 00:22:00,220
Like, no, if you have symptoms, I'll test
you, but there's no purpose.
348
00:22:00,590 --> 00:22:02,250
Um, and testing you.
349
00:22:02,250 --> 00:22:08,350
So your fear might be that had you known
earlier specifically that you had FA,
350
00:22:08,350 --> 00:22:13,990
maybe as a child, as an early adolescent,
then maybe you would have been tempted to
351
00:22:13,990 --> 00:22:17,630
take your foot off the accelerator and
maybe not give up, but maybe give up some
352
00:22:17,630 --> 00:22:18,790
for sure.
353
00:22:18,790 --> 00:22:21,370
And, and it worked out perfect.
354
00:22:21,370 --> 00:22:30,172
And now my son, if down the road, he wants
to have kids, his partner can get tested.
355
00:22:30,510 --> 00:22:34,070
And if she's in the clear, then that's
good.
356
00:22:34,070 --> 00:22:40,530
Cause obviously he has a bad gene from me
because of my two genes, I gave him a bad
357
00:22:40,530 --> 00:22:41,530
gene.
358
00:22:41,530 --> 00:22:44,150
So he doesn't have that option.
359
00:22:45,130 --> 00:22:50,890
Um, but there's I think three or four
trials in the pipeline right now for stem
360
00:22:50,890 --> 00:22:52,570
cell research.
361
00:22:52,810 --> 00:22:55,190
You know, it's, it's all very exciting.
362
00:22:55,190 --> 00:22:57,670
It's just, you're a part of that now.
363
00:22:57,670 --> 00:22:58,180
Yeah.
364
00:22:58,180 --> 00:23:00,250
You're taking this experimental drug.
365
00:23:00,366 --> 00:23:00,816
Yeah.
366
00:23:00,816 --> 00:23:05,466
Which is meant to at least pause symptoms
if not, you know, improve them.
367
00:23:05,466 --> 00:23:05,906
Yeah.
368
00:23:05,906 --> 00:23:12,306
And I think I've done four or five trials
over the years.
369
00:23:12,766 --> 00:23:17,666
They've all been, it's interesting.
370
00:23:17,666 --> 00:23:24,346
It's a whole, um, it's, it's a new
territory for everyone.
371
00:23:24,346 --> 00:23:28,622
Like you literally are taking this after
rats.
372
00:23:28,622 --> 00:23:30,922
are after monkeys, right?
373
00:23:30,922 --> 00:23:38,202
Like pretty scary, but like, I mean, for
some, but I'm just like, I can do it.
374
00:23:38,202 --> 00:23:39,472
Like here's my arm.
375
00:23:39,472 --> 00:23:44,002
I don't want to see the needle, but let's
see how it works.
376
00:23:44,002 --> 00:23:52,282
And this last trial that I did was
probably like two and a half years ago.
377
00:23:52,282 --> 00:23:54,842
It was pretty intense.
378
00:23:54,842 --> 00:23:55,750
So like,
379
00:23:56,046 --> 00:23:59,346
I think it was 10 days in a facility.
380
00:23:59,346 --> 00:24:06,626
I couldn't leave kind of like jail, not
really, but kind of.
381
00:24:06,626 --> 00:24:17,166
Couldn't leave, had like a little bare bed
that I caught to sleep on, cold showers.
382
00:24:17,166 --> 00:24:23,726
Like it wasn't fancy at all, but I was
there for a purpose.
383
00:24:23,726 --> 00:24:26,062
Like, okay, let's do it.
384
00:24:26,062 --> 00:24:34,482
And I took, so I have a driver, which is a
whole other story, but I took my driver
385
00:24:34,482 --> 00:24:41,422
with me as like my caregiver, in case I
need, actually, the main thing I was
386
00:24:41,422 --> 00:24:46,082
concerned about was like getting my bags
through the airport and getting on the
387
00:24:46,082 --> 00:24:48,072
plane and all of that.
388
00:24:48,072 --> 00:24:51,902
So I just brought her, she helped me with
that stuff.
389
00:24:51,902 --> 00:24:56,270
And she jokes that I was her caregiver,
because,
390
00:24:56,270 --> 00:25:02,530
She was very stressed out as like in this
environment, like, what are they doing to
391
00:25:02,530 --> 00:25:03,030
you?
392
00:25:03,030 --> 00:25:05,860
And I was calming her down for most of it.
393
00:25:05,860 --> 00:25:06,780
Like, you're okay.
394
00:25:06,780 --> 00:25:07,450
You're okay.
395
00:25:07,450 --> 00:25:08,350
That's how you do.
396
00:25:08,350 --> 00:25:11,790
I mean, that's some of the things that I
love is that, you know, sometimes you will
397
00:25:11,790 --> 00:25:13,830
go down hard and crash on the floor.
398
00:25:13,830 --> 00:25:21,030
You'll get up with a black eye and you
know, you just refuse to have people help
399
00:25:21,030 --> 00:25:21,270
you.
400
00:25:21,270 --> 00:25:22,030
Like, no, I got this.
401
00:25:22,030 --> 00:25:22,520
I got this.
402
00:25:22,520 --> 00:25:23,060
I'm tough.
403
00:25:23,060 --> 00:25:23,730
I got this.
404
00:25:23,730 --> 00:25:24,850
I'm tough.
405
00:25:25,358 --> 00:25:30,338
and you end up consoling people more than
needing to be consoled, which is just this
406
00:25:30,338 --> 00:25:33,958
wonderful strength of character and
frankly, strength of body at that point.
407
00:25:33,958 --> 00:25:39,058
Well, you know, but I've learned there's a
good balance too.
408
00:25:39,218 --> 00:25:44,778
So last summer I was in a little car wreck
and the first two people that offered to
409
00:25:44,778 --> 00:25:46,748
help, I was like, I'm okay.
410
00:25:46,748 --> 00:25:48,378
Are you okay?
411
00:25:48,378 --> 00:25:48,758
Okay.
412
00:25:48,758 --> 00:25:51,518
Let's just, let's just tell that story
real quick though, because I mean, first
413
00:25:51,518 --> 00:25:55,150
of all, the fact that you would decided
that you wanted to drive again.
414
00:25:55,150 --> 00:25:55,990
Okay.
415
00:25:55,990 --> 00:25:57,960
So I'll back up.
416
00:25:57,960 --> 00:25:59,510
So I'm 46.
417
00:25:59,510 --> 00:26:08,450
So I was maybe, I don't know, 41 or so I
was going to renew my driver's license and
418
00:26:08,450 --> 00:26:14,280
I go in with my wheelchair and they said,
Oh, you're in a wheelchair.
419
00:26:14,280 --> 00:26:16,090
You have to take the drive test.
420
00:26:16,090 --> 00:26:19,330
And I was like, what, what?
421
00:26:19,330 --> 00:26:22,130
You were renewing and, but because you're
in a wheelchair, you had to take a new
422
00:26:22,130 --> 00:26:22,670
test.
423
00:26:22,670 --> 00:26:23,260
Yeah.
424
00:26:23,260 --> 00:26:25,370
Well, cause your legs weren't working
properly, right?
425
00:26:25,370 --> 00:26:31,070
I mean, I bet the wheelchair wasn't, I bet
that was a clue.
426
00:26:31,450 --> 00:26:35,690
No, no, you didn't say that.
427
00:26:35,690 --> 00:26:38,310
Oh, I have to take the test.
428
00:26:38,310 --> 00:26:40,430
So I took it.
429
00:26:40,890 --> 00:26:43,810
Um, I didn't pass.
430
00:26:43,810 --> 00:26:46,470
So in the state of Washington, but just a
second.
431
00:26:46,470 --> 00:26:50,254
So you were there and you got out of your
wheelchair and into a.
432
00:26:50,254 --> 00:26:51,054
Car.
433
00:26:51,054 --> 00:26:53,114
Oh no, I had to like schedule it.
434
00:26:53,114 --> 00:26:53,554
Okay.
435
00:26:53,554 --> 00:26:54,114
Yeah.
436
00:26:54,114 --> 00:26:54,434
Okay.
437
00:26:54,434 --> 00:26:55,594
The next time.
438
00:26:55,594 --> 00:26:56,194
Yes.
439
00:26:56,194 --> 00:26:58,014
I got to pay.
440
00:26:58,014 --> 00:26:59,054
Well, it's her again.
441
00:26:59,054 --> 00:27:07,054
Um, gone to the car and in the state of
Washington, they won't let you use like
442
00:27:07,054 --> 00:27:10,474
your backup camera at all during the test.
443
00:27:10,474 --> 00:27:17,412
So they covered it and man, I really rely
on that thing.
444
00:27:17,412 --> 00:27:17,646
Yeah.
445
00:27:17,646 --> 00:27:18,936
And I'm short.
446
00:27:18,936 --> 00:27:19,966
You're super short.
447
00:27:19,966 --> 00:27:23,526
Let's just admit like, you're not seeing
over the, you're not turning your head and
448
00:27:23,526 --> 00:27:24,566
looking around behind you.
449
00:27:24,566 --> 00:27:24,626
I know.
450
00:27:24,626 --> 00:27:26,806
I was like, ah, I'm learning.
451
00:27:26,806 --> 00:27:32,046
So I didn't like, you know, I hit the curb
parallel parking back around the quarter.
452
00:27:32,046 --> 00:27:36,086
I was, you know, 18 inches away or too
far, right?
453
00:27:36,086 --> 00:27:39,156
So I had all these dings and I didn't
pass.
454
00:27:39,156 --> 00:27:41,546
So I was like, Oh man.
455
00:27:41,546 --> 00:27:44,866
So I was like, okay, I'll get hand
controls.
456
00:27:45,614 --> 00:27:52,014
So hand controls are basically you drive
with your hand and no pedals.
457
00:27:52,014 --> 00:27:57,934
So I had those installed and they said, I
did great.
458
00:27:57,934 --> 00:27:59,914
I didn't need lessons.
459
00:27:59,914 --> 00:28:01,354
You say, you're doing great.
460
00:28:01,354 --> 00:28:02,974
You're fine.
461
00:28:03,174 --> 00:28:05,114
Took my second test.
462
00:28:05,114 --> 00:28:06,474
Didn't pass.
463
00:28:06,534 --> 00:28:09,194
Still couldn't use the backup camera.
464
00:28:09,194 --> 00:28:10,774
Dang it.
465
00:28:11,054 --> 00:28:12,104
But it didn't pass.
466
00:28:12,104 --> 00:28:13,414
And I was like,
467
00:28:14,094 --> 00:28:17,494
And they told me I only had one more
chance.
468
00:28:17,494 --> 00:28:20,054
And I was like, for what?
469
00:28:20,054 --> 00:28:22,064
Like, that's terrifying.
470
00:28:22,064 --> 00:28:24,784
For the rest of your life, you know, one
more shot at this.
471
00:28:24,784 --> 00:28:26,234
Oh my gosh.
472
00:28:26,234 --> 00:28:27,064
Like, really?
473
00:28:27,064 --> 00:28:31,554
So I took like three and a half years off.
474
00:28:31,554 --> 00:28:33,734
I didn't drive at all.
475
00:28:33,734 --> 00:28:35,154
COVID happened.
476
00:28:35,154 --> 00:28:38,374
I didn't have a huge need to drive.
477
00:28:38,374 --> 00:28:41,594
And I have a driver a couple of days a
week.
478
00:28:41,594 --> 00:28:43,046
Um,
479
00:28:43,886 --> 00:28:48,346
I've been paying for car insurance this
whole time.
480
00:28:48,346 --> 00:28:52,086
So I hate to admit it, but I've been
paying for the car insurance.
481
00:28:52,086 --> 00:28:58,846
So last year, one of my goals for the year
was just to either drive or not to drive,
482
00:28:58,846 --> 00:29:00,705
but to figure it out.
483
00:29:01,186 --> 00:29:04,186
Like, why would you decided you were going
to drive again?
484
00:29:04,186 --> 00:29:10,226
Well, well, no, I wanted to take the test
and, and go from there.
485
00:29:10,226 --> 00:29:13,454
And I practiced for.
486
00:29:13,454 --> 00:29:18,034
Well, I went in to talk to them to
schedule it.
487
00:29:18,474 --> 00:29:21,954
Because I had to get my permit then.
488
00:29:22,274 --> 00:29:25,184
Who at Fort Yvette gets a permit?
489
00:29:25,184 --> 00:29:25,974
But whatever.
490
00:29:25,974 --> 00:29:31,874
I had to get a permit, and they would only
give me a permit for like 28 days or
491
00:29:31,874 --> 00:29:32,314
something.
492
00:29:32,314 --> 00:29:36,294
And I was like, but I have a trip in.
493
00:29:36,526 --> 00:29:43,106
I can't learn how to drive 28 days and
they're like, that's how we'll give it to
494
00:29:43,106 --> 00:29:43,626
you for it.
495
00:29:43,626 --> 00:29:47,806
And I was okay, like I'll figure it out.
496
00:29:47,806 --> 00:29:55,326
So it wasn't like overly confident that I
would pass because maybe I'd practiced
497
00:29:55,326 --> 00:30:02,406
with, because with your permit, you have
to have someone who's had their license
498
00:30:02,406 --> 00:30:04,838
for five years or more, right?
499
00:30:05,550 --> 00:30:10,120
My son was like four years at the time, so
I couldn't practice with him.
500
00:30:10,120 --> 00:30:13,050
I didn't have a lot of people I could
practice with.
501
00:30:13,050 --> 00:30:16,910
So I only maybe practiced like eight
times.
502
00:30:16,910 --> 00:30:21,110
And I was like, OK, let's take this test.
503
00:30:21,110 --> 00:30:29,690
Well, I passed and I was like, oh my gosh,
well, now literally now what?
504
00:30:29,690 --> 00:30:33,934
OK, I'm like, I I don't feel.
505
00:30:33,934 --> 00:30:35,194
super comfortable.
506
00:30:35,194 --> 00:30:42,114
So I passed, but I, I had never practiced
getting my wheelchair in and out of the
507
00:30:42,114 --> 00:30:43,254
car.
508
00:30:43,294 --> 00:30:46,114
And that was so hard.
509
00:30:46,114 --> 00:30:50,464
So like, I thought taking their test would
be the hard part.
510
00:30:50,464 --> 00:30:53,474
Oh no, that was actually the easy part.
511
00:30:53,474 --> 00:30:56,534
And then it was like, figuring out what to
do then.
512
00:30:56,534 --> 00:31:00,574
Like, so now I'm still like figuring it
out.
513
00:31:00,574 --> 00:31:02,958
Like, so it's been,
514
00:31:02,958 --> 00:31:04,478
know it would have been a year.
515
00:31:04,478 --> 00:31:10,598
So I drove for like a month, a little over
a month, and I got in a wreck.
516
00:31:10,977 --> 00:31:15,258
And I tried, so I have a walker too.
517
00:31:15,558 --> 00:31:19,578
I've been using a wheelchair for a little
over five years.
518
00:31:19,578 --> 00:31:23,558
I used a walker for four years before
that.
519
00:31:23,558 --> 00:31:29,568
I have a walker at home, but I just use it
very rarely.
520
00:31:30,094 --> 00:31:31,694
I wish I used it more.
521
00:31:31,694 --> 00:31:33,004
I need to use it more.
522
00:31:33,004 --> 00:31:33,994
I will.
523
00:31:33,994 --> 00:31:35,454
I will.
524
00:31:36,514 --> 00:31:43,194
So I would use my walker a little bit or
I'd have my walker in the car or my
525
00:31:43,194 --> 00:31:48,454
wheelchair in the car and then use the
other device in the house if I was home
526
00:31:48,454 --> 00:31:49,594
alone.
527
00:31:50,354 --> 00:31:54,214
So like my first big outing.
528
00:31:54,214 --> 00:31:56,134
Okay, I'm going to admit it right now.
529
00:31:56,134 --> 00:31:57,714
I like pedicures.
530
00:31:57,714 --> 00:31:59,950
I like getting pedicures.
531
00:31:59,950 --> 00:32:00,530
Nothing wrong with that.
532
00:32:00,530 --> 00:32:01,860
I'm right there with you, so.
533
00:32:01,860 --> 00:32:06,990
My first goal was to drive up to get a
pedicure.
534
00:32:06,990 --> 00:32:14,490
So I drove up with, and I couldn't get my
wheelchair in, so I drove up with my
535
00:32:14,490 --> 00:32:16,390
walker.
536
00:32:16,670 --> 00:32:26,730
And man, you don't realize from the
Hanukkah parking spot, for the 20 steps
537
00:32:26,730 --> 00:32:29,092
you have to get to the door, I was like.
538
00:32:29,102 --> 00:32:30,762
so far.
539
00:32:30,762 --> 00:32:38,282
So I bought in and they know me at the
nail salon and picked my color and they're
540
00:32:38,282 --> 00:32:39,462
like, oh, just sit down.
541
00:32:39,462 --> 00:32:43,122
We'll push you and have a bigger walker
with the seat.
542
00:32:43,122 --> 00:32:44,182
So that was nice.
543
00:32:44,182 --> 00:32:47,602
And I was like, oh, I can relax.
544
00:32:48,002 --> 00:32:50,552
Had my great pedicure afterwards.
545
00:32:50,552 --> 00:32:54,932
They just pushed me back all the way to
the car and even loaded it.
546
00:32:54,932 --> 00:32:55,982
So that was great.
547
00:32:55,982 --> 00:32:58,688
So the next month I was like,
548
00:32:58,734 --> 00:33:01,934
I'm going to try this time with my
wheelchair.
549
00:33:02,634 --> 00:33:03,844
So back for another pedicure.
550
00:33:03,844 --> 00:33:06,234
This time with a wheelchair.
551
00:33:06,274 --> 00:33:07,014
Okay.
552
00:33:07,014 --> 00:33:11,154
I mean, pedicures are neat.
553
00:33:11,154 --> 00:33:11,894
This is critical.
554
00:33:11,894 --> 00:33:17,134
And you, you have a Honda Accord that you
had re outfitted with hand controls.
555
00:33:17,294 --> 00:33:17,714
Okay.
556
00:33:17,714 --> 00:33:18,034
Yeah.
557
00:33:18,034 --> 00:33:18,734
Yeah.
558
00:33:18,734 --> 00:33:19,004
Yeah.
559
00:33:19,004 --> 00:33:20,684
So it's a low, right?
560
00:33:20,684 --> 00:33:26,350
A low with bucket seats and, but, but
being by foot it's.
561
00:33:26,350 --> 00:33:29,590
It's hard to get it up high enough.
562
00:33:29,990 --> 00:33:32,830
So that day.
563
00:33:34,318 --> 00:33:38,758
I have a very light slope on the driveway.
564
00:33:39,578 --> 00:33:42,038
So I was like, okay, I'm gonna take my
wheelchair.
565
00:33:42,038 --> 00:33:44,018
I'm gonna do it myself.
566
00:33:44,198 --> 00:33:47,298
I left like, it's like a four minute ride.
567
00:33:47,298 --> 00:33:50,918
I gave myself like 40 minutes.
568
00:33:50,918 --> 00:33:53,218
I'm just gonna sit in the car.
569
00:33:53,218 --> 00:33:55,638
I'll be, I can do this.
570
00:33:55,638 --> 00:34:01,118
So I went to like take my chair apart and
get it in the backseat.
571
00:34:01,458 --> 00:34:03,950
It was so hard.
572
00:34:03,950 --> 00:34:05,350
It was like 20 minutes.
573
00:34:05,350 --> 00:34:06,650
I was sweating.
574
00:34:06,650 --> 00:34:08,390
I got the wheels off.
575
00:34:08,390 --> 00:34:11,830
My chair decides it wants to like go in
the grass.
576
00:34:11,830 --> 00:34:14,310
So it like floats away like eight feet.
577
00:34:14,310 --> 00:34:16,040
And I'm like, Oh my God.
578
00:34:16,040 --> 00:34:17,570
Cause you're not, cause you don't walk.
579
00:34:17,570 --> 00:34:21,350
I mean, so what do you, how do you even
like standing there to put the, Oh,
580
00:34:21,350 --> 00:34:23,310
leaning against the car.
581
00:34:23,310 --> 00:34:29,650
So then I have to like crawl to get my
chair and drag it back.
582
00:34:29,650 --> 00:34:29,970
Right.
583
00:34:29,970 --> 00:34:33,430
So I'm just like literally sweating.
584
00:34:33,430 --> 00:34:34,190
Right.
585
00:34:34,190 --> 00:34:40,290
I finally get in the car and I'm just
like, I just break down.
586
00:34:40,290 --> 00:34:42,170
Like that was the worst.
587
00:34:42,170 --> 00:34:45,910
And my friend, sort of a great friend next
door.
588
00:34:45,910 --> 00:34:49,520
And she's like, why don't you just tell me
I'll come help you.
589
00:34:49,520 --> 00:34:52,270
And I was like, cause I have to try it.
590
00:34:52,270 --> 00:34:54,880
I have to, I have to figure this out.
591
00:34:54,880 --> 00:35:00,334
And then I got to the nail place and I was
like, yeah, no.
592
00:35:00,334 --> 00:35:04,734
No, I was like, I'm just going to ask
someone.
593
00:35:04,734 --> 00:35:10,634
So I just waited and I saw a nice person,
but I was like, Oh, do you mind helping me
594
00:35:10,634 --> 00:35:12,694
with this real quick?
595
00:35:12,694 --> 00:35:15,454
And you know, most people love to help.
596
00:35:15,454 --> 00:35:18,174
Like they want to be needed.
597
00:35:18,214 --> 00:35:21,954
Like I would love to help someone if they
need it.
598
00:35:21,954 --> 00:35:24,434
They probably want to ask me.
599
00:35:24,934 --> 00:35:26,354
I'll still help.
600
00:35:29,870 --> 00:35:32,690
So, you know, it's different.
601
00:35:32,690 --> 00:35:36,140
It's not like, you know, that was my day,
right?
602
00:35:36,140 --> 00:35:37,170
Getting a pedicure.
603
00:35:37,170 --> 00:35:42,970
I'm like, ah, I did it myself, kind of,
but like, it was great.
604
00:35:42,970 --> 00:35:47,390
But now, okay, so I drove for like a
little over a month.
605
00:35:47,390 --> 00:35:51,250
I had a couple of like long drives of like
45 minutes.
606
00:35:51,250 --> 00:35:53,910
Oh, I thought you were gonna tell me that
the day that you got your pedicure was the
607
00:35:53,910 --> 00:35:54,940
day that you got in Iraq.
608
00:35:54,940 --> 00:35:55,470
No.
609
00:35:55,470 --> 00:35:59,374
Because I wanted to have like a tow truck
joke ready to go.
610
00:35:59,374 --> 00:36:01,734
Totally killed that.
611
00:36:02,074 --> 00:36:03,854
All right, all right.
612
00:36:03,854 --> 00:36:05,264
Killed the dad joke right off the bat.
613
00:36:05,264 --> 00:36:10,514
I've got lots of pedigree stories, so
that's how my water broke too, getting in
614
00:36:10,514 --> 00:36:11,164
pedigree.
615
00:36:11,164 --> 00:36:12,834
Oh, okay.
616
00:36:13,494 --> 00:36:14,074
Another day.
617
00:36:14,074 --> 00:36:14,654
Another known fact.
618
00:36:14,654 --> 00:36:15,344
Another day.
619
00:36:15,344 --> 00:36:15,824
Another interview.
620
00:36:15,824 --> 00:36:17,424
There's a nerve on your foot.
621
00:36:17,424 --> 00:36:18,014
Anyway.
622
00:36:18,014 --> 00:36:20,014
Okay, all right, noted.
623
00:36:21,374 --> 00:36:26,104
Yeah, so the day I got in a wreck, it was
just a really long day.
624
00:36:26,104 --> 00:36:27,374
And again,
625
00:36:27,374 --> 00:36:30,374
I couldn't get my wheelchair in the car.
626
00:36:30,374 --> 00:36:34,074
So I had my son put it in the car.
627
00:36:34,074 --> 00:36:37,934
So it was ready for me and he was gone at
work all day.
628
00:36:38,654 --> 00:36:45,974
And again, I don't use my walker a lot,
but that whole morning, breakfast, coffee,
629
00:36:45,974 --> 00:36:51,594
shower, getting dressed, going around the
house, I used my walker that day.
630
00:36:51,594 --> 00:36:54,374
I was so exhausted.
631
00:36:54,534 --> 00:36:56,718
And then I drove like 45 minutes.
632
00:36:56,718 --> 00:36:59,298
visited with a friend.
633
00:37:00,178 --> 00:37:03,618
More, more, you know, that just takes more
energy.
634
00:37:03,918 --> 00:37:06,078
Left her house.
635
00:37:06,598 --> 00:37:11,418
Going to see another friend because you
know, if I'm out and about, I should just
636
00:37:11,418 --> 00:37:13,358
do them all at once.
637
00:37:14,278 --> 00:37:18,318
Left her house, looked both ways at her
stop sign.
638
00:37:18,318 --> 00:37:19,988
Didn't see any cars coming.
639
00:37:19,988 --> 00:37:21,998
Looked again, nothing.
640
00:37:21,998 --> 00:37:26,728
Pulled out and this car came just
screaming up the road.
641
00:37:27,342 --> 00:37:32,422
I don't know what the speed limit was, but
they were going at least 50 or so.
642
00:37:32,422 --> 00:37:39,822
I was going, when I got in a wreck, maybe
10 miles an hour, like I was not going
643
00:37:39,822 --> 00:37:47,062
fast, but they were in my lane and I
couldn't really, there was no like side to
644
00:37:47,062 --> 00:37:49,082
go to the right.
645
00:37:49,082 --> 00:37:55,422
So to avoid like a head on collision,
instead of going into their lane, which
646
00:37:55,422 --> 00:37:56,480
sounds,
647
00:37:56,590 --> 00:37:58,530
Like I should have done.
648
00:37:58,530 --> 00:38:03,790
I over -cracked it and just went straight
to the left and went into the bushes and
649
00:38:03,790 --> 00:38:04,910
trees.
650
00:38:05,430 --> 00:38:10,810
Um, but I look at it as it could have been
a lot worse.
651
00:38:10,810 --> 00:38:13,390
Like, yeah, I remember this story.
652
00:38:13,390 --> 00:38:17,450
Went over the curb down into the bushes,
hit a tree basically.
653
00:38:17,450 --> 00:38:20,510
And then a good Samaritan stopped.
654
00:38:20,510 --> 00:38:21,040
Kneel.
655
00:38:21,040 --> 00:38:21,560
Kneel.
656
00:38:21,560 --> 00:38:23,290
This young guy stopped.
657
00:38:23,450 --> 00:38:24,050
Hold it.
658
00:38:24,050 --> 00:38:26,062
Just let me, just someone is this right.
659
00:38:26,062 --> 00:38:32,522
Did he not come down there and like, he
was like pale, just like ghost while like
660
00:38:32,522 --> 00:38:35,542
freaked out because you couldn't walk.
661
00:38:35,542 --> 00:38:42,262
And he saw a wheelchair and he was like,
did this just happen?
662
00:38:42,262 --> 00:38:42,532
Yeah.
663
00:38:42,532 --> 00:38:46,372
That was after cause cause so I couldn't.
664
00:38:46,372 --> 00:38:50,802
So after I told the other two cars that
stopped, I'm like, no, I'm okay.
665
00:38:50,802 --> 00:38:51,522
Thanks.
666
00:38:51,522 --> 00:38:52,522
Are you okay?
667
00:38:52,522 --> 00:38:52,992
Right.
668
00:38:52,992 --> 00:38:55,474
So then I realized.
669
00:38:55,598 --> 00:38:57,718
my car won't back out.
670
00:38:57,718 --> 00:39:03,118
Like I can't get out because there's like
a juniper tree and bushes.
671
00:39:03,118 --> 00:39:08,398
So I opened my door and I was like I can't
crawl over this stuff.
672
00:39:08,398 --> 00:39:10,938
I'm like actually I do need help.
673
00:39:10,938 --> 00:39:17,758
So the next guy that came, Neil, I was
like yes I do need help.
674
00:39:18,538 --> 00:39:20,808
And I hadn't like hurt nothing.
675
00:39:20,808 --> 00:39:24,376
I didn't hurt myself or get any injuries.
676
00:39:24,398 --> 00:39:30,578
from the wreck, but from attempting the
bushes, I got like a little scrape on my
677
00:39:30,578 --> 00:39:33,198
knee and blood a little bit.
678
00:39:33,198 --> 00:39:37,518
He was so freaked out by this little drop
of blood.
679
00:39:37,518 --> 00:39:40,787
He was like, oh, you must be covered in a
blanket.
680
00:39:40,787 --> 00:39:48,958
And I can't, I was like, okay, like, so he
lifted me over this little bush and gets
681
00:39:48,958 --> 00:39:51,918
me to like a stable spot.
682
00:39:52,558 --> 00:39:53,510
And, um,
683
00:39:53,838 --> 00:39:58,218
And then I said, Oh, can you get my
wheelchair out of the back too?
684
00:39:58,218 --> 00:40:05,878
And he looked at me and he was like, and
he brings it and he goes to this just
685
00:40:05,878 --> 00:40:07,258
happen.
686
00:40:07,258 --> 00:40:10,438
You mean your inability to walk.
687
00:40:10,818 --> 00:40:17,008
I'm like, yes, I carry a wheelchair just
in case I become immobilized.
688
00:40:17,008 --> 00:40:21,048
And then, and then I'm like, he's like,
what else do you need?
689
00:40:21,048 --> 00:40:21,868
I said, I'm good.
690
00:40:21,868 --> 00:40:24,102
My friend will come get me.
691
00:40:24,206 --> 00:40:27,486
I'm like, but we should do a selfie real
quick.
692
00:40:27,486 --> 00:40:29,766
He was like, what?
693
00:40:30,906 --> 00:40:38,286
So I'm a selfie of two of us and he is
just like, so stressed out and like
694
00:40:38,286 --> 00:40:39,566
sweaty.
695
00:40:40,426 --> 00:40:41,686
Oh my God.
696
00:40:41,686 --> 00:40:42,916
He's still telling the story.
697
00:40:42,916 --> 00:40:44,126
You saved my life, Neil.
698
00:40:44,126 --> 00:40:45,246
Thank you so much.
699
00:40:45,246 --> 00:40:46,026
That's great.
700
00:40:46,026 --> 00:40:50,146
Once again, making someone else feel
better because they can barely handle it.
701
00:40:50,146 --> 00:40:51,662
So.
702
00:40:51,662 --> 00:40:53,072
Let's talk about everyday life for a
second.
703
00:40:53,072 --> 00:40:57,142
How do you approach every day to make sure
that you're living to the fullest?
704
00:40:57,142 --> 00:40:58,402
Cause you sure do.
705
00:40:58,402 --> 00:41:03,402
Um, I mean, are there specific routines or
practices that help you stay positive and
706
00:41:03,402 --> 00:41:04,642
motivated?
707
00:41:05,102 --> 00:41:09,542
Well, so I really start, so I have my
driver twice a week.
708
00:41:09,542 --> 00:41:14,282
I really, there's things that I like to do
and really want to do.
709
00:41:14,282 --> 00:41:21,870
And I've just, since I don't work, I've
kind of built these things into my life.
710
00:41:21,870 --> 00:41:27,770
So I go to Pilates twice a week, go to
acupuncture, go to stretching.
711
00:41:27,890 --> 00:41:33,190
Like I do these things to help me overall.
712
00:41:33,190 --> 00:41:40,030
Acupuncture helps me in so many areas,
just being grounded.
713
00:41:40,030 --> 00:41:47,070
But it helps with some neuropathy in my
feet and I can feel things better if I go.
714
00:41:47,070 --> 00:41:49,590
I think pedicures help with that too.
715
00:41:49,590 --> 00:41:50,798
Oh, 100%.
716
00:41:50,798 --> 00:41:52,038
No question.
717
00:41:53,018 --> 00:41:57,858
No, really, if I don't get a picture, I'm
like, no, the massage and everything,
718
00:41:57,858 --> 00:42:04,318
like, I should prep it up next year.
719
00:42:05,938 --> 00:42:14,598
So for me, like, so I start my week, when
I look at my week, I schedule, I'm very
720
00:42:14,598 --> 00:42:18,414
good at scheduling things, so I will
schedule things.
721
00:42:18,414 --> 00:42:21,354
on the days I have heard that I want to
do.
722
00:42:21,354 --> 00:42:30,654
So I also need like time in nature or I
need to do certain errands or go to my 18
723
00:42:30,654 --> 00:42:31,954
doctors or whatever.
724
00:42:31,954 --> 00:42:34,614
I have a lot of doctors, right?
725
00:42:34,614 --> 00:42:37,434
Cardiologists, neurologists, right?
726
00:42:37,434 --> 00:42:40,454
Primary, it just goes on.
727
00:42:40,454 --> 00:42:42,694
So I have to go to appointments.
728
00:42:42,774 --> 00:42:47,566
Like I want to be able to be as
independent as I can.
729
00:42:47,566 --> 00:42:50,526
even though I have a driver and she helps
me.
730
00:42:50,526 --> 00:42:55,626
So we'll go to Trader Joe's, which is like
the best place.
731
00:42:55,866 --> 00:43:00,746
But she'll just like carry all my stuff in
and unload it.
732
00:43:00,746 --> 00:43:02,856
And that just helps me so much.
733
00:43:02,856 --> 00:43:05,846
But I can still do my shopping.
734
00:43:06,126 --> 00:43:13,646
Like for me, having independence is so
important that, and I really want other
735
00:43:13,646 --> 00:43:14,950
people like,
736
00:43:15,726 --> 00:43:18,666
Some people are like, no, I'm disabled.
737
00:43:18,666 --> 00:43:27,986
I don't really want other people to see me
or, but I'm like, for one who cares, like
738
00:43:27,986 --> 00:43:31,116
they're not even probably thinking about
me.
739
00:43:31,116 --> 00:43:34,546
They're probably thinking about
themselves, but it doesn't matter.
740
00:43:34,546 --> 00:43:36,866
Like I'm a human being.
741
00:43:36,866 --> 00:43:42,606
I have the right to shop, to go to the
bathroom, to do whatever.
742
00:43:42,606 --> 00:43:45,614
So I, I will just,
743
00:43:45,614 --> 00:43:47,874
create my day around that.
744
00:43:48,134 --> 00:43:55,814
I don't schedule things too early in the
morning because I like to have my coffee
745
00:43:55,814 --> 00:44:01,674
time and like I probably move a little
slower in the mornings.
746
00:44:01,674 --> 00:44:10,494
I mean people joke that I'm always moving
slow but I don't know like I like my quiet
747
00:44:10,494 --> 00:44:12,694
time and to do what I want.
748
00:44:12,814 --> 00:44:16,474
music or podcasts or different things.
749
00:44:17,794 --> 00:44:21,154
Years ago, I did this like mood tracker.
750
00:44:22,214 --> 00:44:28,394
And it's kind of interesting, but I can't
remember the name of it.
751
00:44:28,394 --> 00:44:34,074
But it like randomly throughout the day,
it would check in on you and like, what's
752
00:44:34,074 --> 00:44:34,984
your mood right?
753
00:44:34,984 --> 00:44:37,794
And at the moment, OK, now what are you
doing?
754
00:44:37,794 --> 00:44:42,982
So at the end of a couple of months, I had
like an analysis and it was like,
755
00:44:43,278 --> 00:44:48,218
Michelle, you are the most happiest when
you are drinking hot tea, when you are
756
00:44:48,218 --> 00:44:53,058
with Abby, when you are listening to music
and podcasts, when you are.
757
00:44:53,058 --> 00:44:59,878
So like, I really like created my life
around these things and the things that
758
00:44:59,878 --> 00:45:01,438
are on the opposite end.
759
00:45:01,438 --> 00:45:05,178
It's like, no, I'm not going to do that
stuff anymore.
760
00:45:05,178 --> 00:45:09,882
So if it's not going to bring me joy or.
761
00:45:10,702 --> 00:45:17,822
if it's taking too much of my energy, like
do you ever hang out with friends and
762
00:45:17,822 --> 00:45:25,902
afterwards you need like a few days off,
like it was exhausting and like you feel
763
00:45:25,902 --> 00:45:33,102
it just took a lot of your energy, then I
kind of, I guess they cut those people out
764
00:45:33,102 --> 00:45:33,982
of my life.
765
00:45:34,062 --> 00:45:40,102
But I do cut down because it's, if, if I'm
not like,
766
00:45:40,910 --> 00:45:45,370
getting a lot of benefit out of it and
it's just taxing on me.
767
00:45:45,370 --> 00:45:47,080
No, I'm not going to do it.
768
00:45:47,080 --> 00:45:52,050
I love that idea that you were actually,
this is a proper use of fitness technology
769
00:45:52,050 --> 00:45:56,110
and wellness technology is that it was
tracking your mood and then you're able to
770
00:45:56,110 --> 00:45:59,650
look at an analysis and figure out like,
so what was I doing when I was in a good
771
00:45:59,650 --> 00:45:59,870
mood?
772
00:45:59,870 --> 00:46:01,350
What was I doing when I was in a bad mood?
773
00:46:01,350 --> 00:46:04,230
And then you just start doing more of the
one.
774
00:46:04,590 --> 00:46:05,010
Yeah.
775
00:46:05,010 --> 00:46:06,060
Radical idea.
776
00:46:06,060 --> 00:46:08,390
Like how easy is that to think about?
777
00:46:08,390 --> 00:46:08,840
Right?
778
00:46:08,840 --> 00:46:10,078
And like,
779
00:46:10,382 --> 00:46:17,582
I was like, oh, this is, and it was all
like at random times, but it was like so
780
00:46:17,582 --> 00:46:18,552
beneficial.
781
00:46:18,552 --> 00:46:24,482
Cause I was like, I'm not going to say
like comfort, comfort stuff, but sometimes
782
00:46:24,482 --> 00:46:30,042
like you need like to just chill or have
comfort things.
783
00:46:30,042 --> 00:46:34,842
And it's like, okay, I'm just going to go
ahead and my G and like, we'll sit in the
784
00:46:34,842 --> 00:46:37,882
corner and turn the music on, but that's
okay.
785
00:46:37,882 --> 00:46:38,862
Like this just.
786
00:46:38,862 --> 00:46:40,452
me what I need.
787
00:46:40,452 --> 00:46:48,882
We all need different things, but learning
very specific about myself was really
788
00:46:48,882 --> 00:46:51,402
important and necessary.
789
00:46:51,402 --> 00:46:53,350
And I don't think like...
790
00:46:54,926 --> 00:47:02,366
probably even five years ago, I don't
think I could say these things are things
791
00:47:02,366 --> 00:47:03,626
that make me happy.
792
00:47:03,626 --> 00:47:09,346
Like I could maybe throw a couple things
out, but it would just be kind of
793
00:47:09,346 --> 00:47:10,306
guessing.
794
00:47:10,306 --> 00:47:15,506
And, and now I'm like, no, that's the data
to back it up.
795
00:47:15,546 --> 00:47:19,226
I bet there are listeners wondering at
this point, like, let's just take a minute
796
00:47:19,226 --> 00:47:22,126
and talk about, so you had a career.
797
00:47:22,126 --> 00:47:25,966
And there's probably people listening as I
would be in like, so you're not working
798
00:47:25,966 --> 00:47:26,846
now.
799
00:47:26,846 --> 00:47:31,866
How is it that you can, you have a driver
to help you a couple of days a week and
800
00:47:31,866 --> 00:47:33,596
you're not working and you did have a
career.
801
00:47:33,596 --> 00:47:37,746
Let's kind of back up a little bit and
like, what did you do and how is it that
802
00:47:37,746 --> 00:47:40,266
you were able to make this work?
803
00:47:40,426 --> 00:47:42,006
Wow.
804
00:47:42,006 --> 00:47:43,006
That's a lot.
805
00:47:43,006 --> 00:47:47,966
So I, so I like to say now like I have a
life balance.
806
00:47:47,966 --> 00:47:49,966
I really had.
807
00:47:50,478 --> 00:47:52,938
Not great work -life balance.
808
00:47:52,938 --> 00:47:54,978
I just worked a lot.
809
00:47:54,978 --> 00:48:05,618
I was in global logistics, so my customers
Were in supply chains they move freight
810
00:48:05,618 --> 00:48:10,958
around the world Kind of like a travel
agent for freight.
811
00:48:10,958 --> 00:48:20,238
I worked on the import side I was there in
19 years really loved
812
00:48:20,238 --> 00:48:30,938
what I did for about 16, 17 of those
years, worked my way up in the company,
813
00:48:30,938 --> 00:48:34,878
was the operations manager when I left.
814
00:48:34,878 --> 00:48:46,998
It was very fast -paced, intense, because
if, like we've all heard about supply
815
00:48:46,998 --> 00:48:49,638
chain issues since COVID, right?
816
00:48:49,638 --> 00:48:50,414
Yeah.
817
00:48:50,414 --> 00:48:53,234
And since the Suez Canal thing.
818
00:48:53,234 --> 00:48:54,294
Yeah.
819
00:48:54,294 --> 00:49:02,374
So like if one airplane is late or one
vessel is late, like that can have a huge
820
00:49:02,374 --> 00:49:04,514
effect on supply chains.
821
00:49:04,514 --> 00:49:12,254
So a lot of my customers, if there was a
delay, which there's always a delay and
822
00:49:12,254 --> 00:49:17,546
with customs, right, there's exams,
there's all these delays.
823
00:49:17,902 --> 00:49:27,402
I would explain my job as kind of like
just super intense and like I barely had a
824
00:49:27,402 --> 00:49:28,482
moment myself.
825
00:49:28,482 --> 00:49:32,542
So I didn't take lunches a lot of time or
breaks.
826
00:49:32,542 --> 00:49:34,822
It was just go, go, go.
827
00:49:34,822 --> 00:49:41,102
And then at six or seven at night, it was
like, okay, I can go home now for, you
828
00:49:41,102 --> 00:49:45,842
know, just basically to sleep and eat and
come back the next day.
829
00:49:45,842 --> 00:49:46,286
So.
830
00:49:46,286 --> 00:49:47,446
I worked a lot.
831
00:49:47,446 --> 00:49:49,126
I still traveled.
832
00:49:50,106 --> 00:49:56,366
You know, I used my vacation days very
well and maximized everything.
833
00:49:56,366 --> 00:50:02,546
Um, but I didn't have a great work life
balance overall and now I just have a life
834
00:50:02,546 --> 00:50:03,046
balance.
835
00:50:03,046 --> 00:50:07,166
So I just have fun and that's, it's great.
836
00:50:07,166 --> 00:50:10,346
It's great that I am able to do this.
837
00:50:10,346 --> 00:50:15,982
Like everyone's like, but you have this
disease and I'm like, but I have the
838
00:50:15,982 --> 00:50:17,742
best life.
839
00:50:17,742 --> 00:50:20,762
Like I wouldn't change it at all.
840
00:50:20,762 --> 00:50:22,802
So I have this career.
841
00:50:25,614 --> 00:50:31,294
You know, I started there in 2001, so I
was 23.
842
00:50:31,294 --> 00:50:35,074
So they kind of saw my whole progression.
843
00:50:35,074 --> 00:50:38,194
So I used nothing, I walked just fine.
844
00:50:38,194 --> 00:50:41,893
And then I walked kind of like a drunk
person.
845
00:50:41,893 --> 00:50:47,314
Later in my 20s and 30s, I walked like a
drunk person.
846
00:50:47,314 --> 00:50:50,474
That's the easiest way to describe it.
847
00:50:50,574 --> 00:50:52,678
Then I just got a walker.
848
00:50:53,710 --> 00:50:59,450
I remember the day I ordered a walker on
Amazon and I had it delivered to the
849
00:50:59,450 --> 00:51:06,890
office and I had my like one of the, I
don't know, warehouse guys, safety guys,
850
00:51:07,030 --> 00:51:12,270
someone had him put it together for me and
like take it around the whole office and
851
00:51:12,270 --> 00:51:18,710
over everywhere just to make sure safely
like it fit through everything that like
852
00:51:18,710 --> 00:51:23,142
he didn't find any weird spots with it or
corners and.
853
00:51:23,374 --> 00:51:26,534
then it was like, okay, I can do this, I
can do this.
854
00:51:26,534 --> 00:51:34,254
And then from that day, I was like, the
walker was like part of me as a human.
855
00:51:34,254 --> 00:51:38,134
Like I didn't go anywhere without it.
856
00:51:38,314 --> 00:51:45,914
And I love, I loved the walker because I
was like, oh, people didn't think I was
857
00:51:45,914 --> 00:51:47,154
drunk off.
858
00:51:47,194 --> 00:51:51,214
I would get cut off all the time and like,
859
00:51:51,214 --> 00:51:55,364
just order a water and they'd be like,
yeah, that's all we're gonna give you.
860
00:51:55,364 --> 00:51:57,184
And I'm like - People thought you were
drunk a lot.
861
00:51:57,184 --> 00:52:00,594
Oh, all the time, all the time, all the
time.
862
00:52:00,594 --> 00:52:04,194
Especially like going into bars and
restaurants.
863
00:52:04,194 --> 00:52:08,414
So your walker and now your wheelchair is
kind of like this - Yeah, and with the
864
00:52:08,414 --> 00:52:12,554
walker, it was like at least I had a
medical device, so I didn't have that
865
00:52:12,554 --> 00:52:13,914
issue anymore.
866
00:52:13,914 --> 00:52:20,270
And I was like, I mean, I hadn't even, I
had talked to like a police officer.
867
00:52:20,270 --> 00:52:22,260
probably in my 30s.
868
00:52:22,260 --> 00:52:25,290
So I was like, well, what do I do?
869
00:52:25,290 --> 00:52:30,570
Like if I get pulled over, you are like,
you know, walk the line for me.
870
00:52:30,570 --> 00:52:32,990
And I'm like, I have a balance issue.
871
00:52:32,990 --> 00:52:39,420
He goes, every day people tell me they
have balance issues that are drunk.
872
00:52:39,420 --> 00:52:42,720
And I'm like, oh, well, what can I do?
873
00:52:42,720 --> 00:52:48,190
He goes, so I'd probably just arrest you
and assume it was drugs if it wasn't, if
874
00:52:48,190 --> 00:52:49,742
you didn't do the, or.
875
00:52:49,742 --> 00:52:52,322
you know, if the breath was zero.
876
00:52:52,322 --> 00:52:57,282
And I'm like, but even if I told you, he's
like, yeah, because I hear that all the
877
00:52:57,282 --> 00:52:57,442
time.
878
00:52:57,442 --> 00:52:59,602
And I was like, what?
879
00:52:59,602 --> 00:53:06,962
So I actually had one of my doctors write
me like a note on their business card just
880
00:53:06,962 --> 00:53:12,038
to say what that was even before I was
diagnosed, I think like.
881
00:53:12,110 --> 00:53:13,760
I was no belt.
882
00:53:13,760 --> 00:53:14,590
This is legit.
883
00:53:14,590 --> 00:53:15,870
She has a legit issue.
884
00:53:15,870 --> 00:53:16,650
She is not in.
885
00:53:16,650 --> 00:53:18,010
That was like my life.
886
00:53:18,010 --> 00:53:19,750
You know, I cared that everywhere.
887
00:53:19,750 --> 00:53:22,890
And then did you start drinking all the
time because you could get away with it?
888
00:53:22,890 --> 00:53:25,370
There was actually one bar in Portland.
889
00:53:25,370 --> 00:53:27,310
They, they wouldn't serve me.
890
00:53:27,310 --> 00:53:34,090
And it was like, we went for a, one of the
guys that worked for me, uh, it was like
891
00:53:34,090 --> 00:53:34,910
his last day.
892
00:53:34,910 --> 00:53:38,710
We had a little go in a way party and they
wouldn't serve me.
893
00:53:38,710 --> 00:53:40,470
And they said, Oh no, you're drunk.
894
00:53:40,470 --> 00:53:41,934
And I said, no.
895
00:53:41,934 --> 00:53:48,654
I'm not drunk, but they had like three
steps and my contact fell out and when I
896
00:53:48,654 --> 00:53:54,674
walked I mean that was not really the
excuse but that didn't help but I walked
897
00:53:54,674 --> 00:54:00,874
extra drunk looking and they said no way
So finally and I said no problem.
898
00:54:00,874 --> 00:54:05,954
I'll just have water so after like two
hours, they said okay We'll give you a
899
00:54:05,954 --> 00:54:06,702
drink now
900
00:54:06,702 --> 00:54:07,382
It's okay.
901
00:54:07,382 --> 00:54:13,822
And I asked for like a double shot, which
is so not like me, but I was like, yeah,
902
00:54:13,822 --> 00:54:15,512
you're gonna give me one drink.
903
00:54:15,512 --> 00:54:18,312
I'm like, I'm going to just mess up you.
904
00:54:18,312 --> 00:54:27,222
And they're like, let's talk a little bit
about how your support system has played a
905
00:54:27,222 --> 00:54:32,382
role in your journey and, and maybe like
what advice you have for others who are on
906
00:54:32,382 --> 00:54:36,186
building and on maintaining a strong
support network.
907
00:54:37,038 --> 00:54:42,788
So I rely a lot on myself.
908
00:54:42,788 --> 00:54:46,738
I don't like to rely on other people.
909
00:54:48,678 --> 00:54:53,386
I mean my dad, I'm very close with my dad
and my son.
910
00:54:55,598 --> 00:54:58,358
and a lot of like friends.
911
00:54:58,358 --> 00:55:05,438
But again, I don't like to rely on anyone
because that can create frustration for
912
00:55:05,438 --> 00:55:07,518
them, for me.
913
00:55:07,518 --> 00:55:13,358
Like I don't want someone to have
expectations that they have to do this or
914
00:55:13,358 --> 00:55:14,178
that.
915
00:55:14,178 --> 00:55:19,658
I'm finding my lawn mode, I have a guy.
916
00:55:19,658 --> 00:55:22,198
I'll figure out how I can do things.
917
00:55:22,198 --> 00:55:24,668
It just might be different than.
918
00:55:24,686 --> 00:55:28,146
what other people do or expect.
919
00:55:28,526 --> 00:55:30,026
And we go back to work.
920
00:55:30,026 --> 00:55:37,746
So I was at work 19 years, had my walker
transitioned to the wheelchair.
921
00:55:37,746 --> 00:55:40,966
I was very excited to get to the
wheelchair.
922
00:55:40,966 --> 00:55:44,286
So I was like, yay, I'm energy.
923
00:55:44,286 --> 00:55:46,706
I won't fall as much.
924
00:55:46,806 --> 00:55:53,646
Like how I would explain using my walker
is like, I'm
925
00:55:53,646 --> 00:55:55,146
I'm slug.
926
00:55:55,146 --> 00:56:00,686
Look, imagine you're a slug and you're
just like pulling your body.
927
00:56:00,686 --> 00:56:03,926
That's like, it was a lot of effort.
928
00:56:03,926 --> 00:56:11,586
And to like, to do my rounds on like talk
to all of my, my team, it would take an
929
00:56:11,586 --> 00:56:13,626
hour or two of walking around.
930
00:56:13,626 --> 00:56:16,586
And that was so much energy.
931
00:56:16,586 --> 00:56:21,358
And I was like, yeah, I'm so good at this
wheelchair.
932
00:56:21,358 --> 00:56:24,578
Like it'll make my life so much easier.
933
00:56:24,578 --> 00:56:31,798
Like a lot of people with FA and other
disabilities, they really have a hard time
934
00:56:31,798 --> 00:56:38,058
accepting devices and like they don't
want, they don't want to be older.
935
00:56:38,058 --> 00:56:41,938
They don't want, they don't want to be
seen.
936
00:56:41,938 --> 00:56:50,258
I say seen that way, but I'm like, if you
can make your independence better and
937
00:56:50,258 --> 00:56:51,046
like,
938
00:56:51,118 --> 00:56:55,458
You can thrive more, like sign me up.
939
00:56:55,458 --> 00:56:56,678
I know.
940
00:56:56,678 --> 00:56:59,518
I've seen you, I've seen you use this to
your advantage.
941
00:56:59,518 --> 00:57:02,738
Some good concert seats here and there.
942
00:57:02,738 --> 00:57:04,938
You know, VIP entrance.
943
00:57:04,938 --> 00:57:07,218
Yeah.
944
00:57:07,218 --> 00:57:13,518
I have seen you not be too bashful about
using what you need in order to see.
945
00:57:13,518 --> 00:57:19,218
It's, you know, life is different, but
like there's perks with it.
946
00:57:19,218 --> 00:57:20,430
Perks like.
947
00:57:20,430 --> 00:57:26,370
the best parking, you know, Disneyland, to
the front of the line, right?
948
00:57:26,750 --> 00:57:34,610
There's benefits and I definitely utilize
all of them and I just don't care what
949
00:57:34,610 --> 00:57:35,910
other people think.
950
00:57:35,910 --> 00:57:42,930
And that's, I think that's really like,
deviated how I live with other people.
951
00:57:42,930 --> 00:57:50,126
I don't, I don't, I don't wanna do
something that would make,
952
00:57:50,126 --> 00:57:54,806
me uncomfortable, but somebody else more
comfortable.
953
00:57:54,946 --> 00:57:59,446
Like there is a, there's a middle ground
somewhere.
954
00:57:59,446 --> 00:58:09,406
Um, so when I got in the wheelchair
working, I was excited, like very excited.
955
00:58:09,406 --> 00:58:15,986
Two, two days, two, two whole days went by
and my boss called me into her office,
956
00:58:15,986 --> 00:58:19,630
closed the door and she had been my
manager.
957
00:58:19,630 --> 00:58:23,390
for probably 15 years.
958
00:58:23,390 --> 00:58:27,190
She actually got me the job with their
company.
959
00:58:27,790 --> 00:58:37,210
I was with the cargo airline before that,
so I knew of this company, but when I left
960
00:58:37,210 --> 00:58:39,960
there, it was like, do you have anything?
961
00:58:39,960 --> 00:58:41,630
Are you guys hiring?
962
00:58:41,930 --> 00:58:49,550
So like, we didn't have the greatest
relationship, but like,
963
00:58:49,550 --> 00:58:53,010
We worked together for a long time.
964
00:58:53,070 --> 00:58:59,810
So two days went by, she called me in and
she said, you know, we were at Javier the
965
00:58:59,810 --> 00:59:02,310
night before with a customer.
966
00:59:03,390 --> 00:59:10,110
And so there was alcohol involved as well,
which would you on balance and then you
967
00:59:10,110 --> 00:59:12,630
add alcohol, it just.
968
00:59:12,830 --> 00:59:17,370
It can be messy, messy to say the least.
969
00:59:17,370 --> 00:59:18,830
So she said.
970
00:59:18,830 --> 00:59:24,510
You know, when you're around customers,
please don't be in your wheelchair.
971
00:59:24,570 --> 00:59:28,010
She's like, you're making them
uncomfortable?
972
00:59:28,010 --> 00:59:29,790
And I was like, what?
973
00:59:29,790 --> 00:59:30,780
I am?
974
00:59:30,780 --> 00:59:34,809
And that was not how I thought.
975
00:59:34,809 --> 00:59:38,790
But then I was like, every day.
976
00:59:38,790 --> 00:59:42,670
So I heard like, oh my God, you're making
your customers uncomfortable.
977
00:59:42,670 --> 00:59:47,110
And my employees, my customers, they were
like my...
978
00:59:47,566 --> 00:59:51,226
That was all I went to work for, was for
them.
979
00:59:51,226 --> 00:59:57,246
And I was like, shoot, like if I'm getting
them uncomfortable, I'm getting my
980
00:59:57,246 --> 00:59:58,766
employees uncomfortable.
981
00:59:59,146 --> 01:00:05,286
So then I would go to work, close my
office door, and just like work in my
982
01:00:05,286 --> 01:00:05,616
office.
983
01:00:05,616 --> 01:00:11,286
And I was like, because I don't want to
make anyone else uncomfortable.
984
01:00:11,406 --> 01:00:16,166
I was like, it seems unbelievable that
you'd have your boss say to you, please do
985
01:00:16,166 --> 01:00:19,786
not use your wheelchair around clients
because it makes them uncomfortable.
986
01:00:20,406 --> 01:00:25,026
Later on, she had said she didn't, she
didn't mean it in that way.
987
01:00:25,026 --> 01:00:29,210
I'm not sure what way she mended, but.
988
01:00:31,726 --> 01:00:34,716
I mean, it all worked perfect.
989
01:00:34,716 --> 01:00:36,126
It worked perfect.
990
01:00:36,126 --> 01:00:38,966
Like it was so painful.
991
01:00:39,546 --> 01:00:42,256
Like I tried for like 10 months.
992
01:00:42,256 --> 01:00:46,226
I was like, OK, I'm not trying for this.
993
01:00:46,266 --> 01:00:49,106
I'm still going to use my wheelchair.
994
01:00:49,366 --> 01:00:54,286
But, you know, like I knew she was wrong,
but it was like.
995
01:00:54,286 --> 01:00:55,916
It just like aided me.
996
01:00:55,916 --> 01:00:56,526
I'm sure.
997
01:00:56,526 --> 01:01:00,218
So one day I was like.
998
01:01:00,558 --> 01:01:03,558
I had a doctor open on Friday.
999
01:01:04,538 --> 01:01:10,944
So I, oh, and when I worked, I really
didn't go to the doctor much, cause like.
1000
01:01:12,878 --> 01:01:16,618
Every hour was a working hour.
1001
01:01:16,618 --> 01:01:20,648
So like to get away from the office was
frowned upon.
1002
01:01:20,648 --> 01:01:23,058
So I was always there.
1003
01:01:23,058 --> 01:01:31,038
And I went to the doctor in the afternoon
and was just like, I don't know, like my
1004
01:01:31,038 --> 01:01:33,878
heart rate was like 130.
1005
01:01:33,878 --> 01:01:35,678
Drive to work.
1006
01:01:35,758 --> 01:01:37,838
It was so high.
1007
01:01:38,178 --> 01:01:42,836
And she was like, well, do you want to
take a month off?
1008
01:01:42,990 --> 01:01:45,950
And I was just like, I'm up.
1009
01:01:46,010 --> 01:01:48,100
Like I can take a month up.
1010
01:01:48,100 --> 01:01:52,330
I can't, I can't hardly come to the
doctor.
1011
01:01:52,750 --> 01:01:54,540
And she was like, sure.
1012
01:01:54,540 --> 01:01:56,490
You can go on a short term disability.
1013
01:01:56,490 --> 01:01:57,550
You take a month off.
1014
01:01:57,550 --> 01:02:00,590
And I was like, was this your doctor
saying this or your boss?
1015
01:02:00,590 --> 01:02:01,680
He was my doctor.
1016
01:02:01,680 --> 01:02:04,710
Your doctor saying it's like a primary
doctor.
1017
01:02:04,710 --> 01:02:09,998
And I was like, and I was like, yeah, I
was like,
1018
01:02:09,998 --> 01:02:11,998
I need a month off.
1019
01:02:11,998 --> 01:02:14,617
I do need a month off.
1020
01:02:14,998 --> 01:02:18,218
Like, and so it was Friday.
1021
01:02:18,218 --> 01:02:19,578
I never went back.
1022
01:02:19,578 --> 01:02:20,878
You never went back.
1023
01:02:20,878 --> 01:02:27,658
No, I took a month off and then went back
to her and she was like, okay, we didn't
1024
01:02:27,658 --> 01:02:28,128
go back.
1025
01:02:28,128 --> 01:02:29,998
And I said, no.
1026
01:02:30,378 --> 01:02:34,118
I'm like, I didn't realize I was so
exhausted.
1027
01:02:34,118 --> 01:02:38,886
Like, I didn't know I was like pushing it.
1028
01:02:39,150 --> 01:02:43,290
I didn't know, you know, say my shoulder
hurt.
1029
01:02:43,290 --> 01:02:45,330
I had no idea my shoulder hurt.
1030
01:02:45,330 --> 01:02:51,070
Cause I would just focus on work, you
know, and like ignore everything else.
1031
01:02:51,070 --> 01:02:54,670
So it was like, no, I need some more time.
1032
01:02:54,670 --> 01:03:04,030
And then I took a little bit more time and
long -term disability was approved and.
1033
01:03:05,150 --> 01:03:06,766
It's fortunate that you had.
1034
01:03:06,766 --> 01:03:09,006
long -term disability set up at that
point.
1035
01:03:09,006 --> 01:03:16,446
And fortunate that I had a diagnosis
because if I didn't have the diagnosis
1036
01:03:16,446 --> 01:03:20,086
that probably wasn't gonna happen.
1037
01:03:21,806 --> 01:03:30,706
So I was like, hmm, let's see, I could go
back to work and deal with all the stress
1038
01:03:30,706 --> 01:03:36,942
and like at that point, like it was very
unhealthy environment.
1039
01:03:36,942 --> 01:03:39,812
not only for me, but so many people there.
1040
01:03:39,812 --> 01:03:44,142
But I was just like, you know, I can't, I
don't want to do this.
1041
01:03:44,142 --> 01:03:47,602
And it paid almost the same.
1042
01:03:48,622 --> 01:03:57,082
Um, so now I get paid not to work and have
fun and like just take care of myself.
1043
01:03:57,082 --> 01:03:57,582
So.
1044
01:03:57,582 --> 01:04:02,072
And to advocate now and to kind of be on
the road and to help other people.
1045
01:04:02,072 --> 01:04:03,022
Yeah.
1046
01:04:03,022 --> 01:04:06,422
You know, I'm curious, you, you have been
an inspiration and continue to be for a
1047
01:04:06,422 --> 01:04:09,322
lot of people, but, um, who inspires you?
1048
01:04:09,322 --> 01:04:11,398
I mean, what do you look to for
inspiration?
1049
01:04:16,622 --> 01:04:21,122
Probably keeping some independence.
1050
01:04:21,202 --> 01:04:23,722
Being able to do things.
1051
01:04:24,682 --> 01:04:28,702
The younger generation, the younger kids
have it.
1052
01:04:28,702 --> 01:04:31,862
The more progressed people have it.
1053
01:04:32,362 --> 01:04:35,602
Like push, push yourself.
1054
01:04:36,062 --> 01:04:38,982
Like, you know, do as much as you can.
1055
01:04:38,982 --> 01:04:43,076
Cause like you hear the saying like, eh.
1056
01:04:45,678 --> 01:04:46,868
lose it or do it.
1057
01:04:46,868 --> 01:04:47,878
What's that saying?
1058
01:04:47,878 --> 01:04:49,048
Oh, do it or lose it.
1059
01:04:49,048 --> 01:04:50,378
Do it or lose it.
1060
01:04:50,378 --> 01:04:56,898
Like it's so true with like this
disability.
1061
01:04:56,898 --> 01:04:59,838
Like you don't walk for a year.
1062
01:04:59,838 --> 01:05:02,038
You probably can't walk.
1063
01:05:02,038 --> 01:05:04,218
Like you have a written bike.
1064
01:05:04,218 --> 01:05:08,218
You're probably going to need a strike or
something different.
1065
01:05:08,218 --> 01:05:12,698
Um, so like, I just keep pushing.
1066
01:05:12,698 --> 01:05:14,578
Like it's so important.
1067
01:05:14,578 --> 01:05:15,398
And
1068
01:05:17,230 --> 01:05:28,910
Selfishly, like when I'm around my friends
that are more disabled, like self
1069
01:05:28,910 --> 01:05:30,210
-suffish.
1070
01:05:30,210 --> 01:05:37,630
But it pushes me like, don't get there,
like move, keep going.
1071
01:05:37,630 --> 01:05:38,690
Yeah.
1072
01:05:38,850 --> 01:05:39,870
Yeah.
1073
01:05:39,870 --> 01:05:40,280
Right.
1074
01:05:40,280 --> 01:05:41,450
Stay ahead.
1075
01:05:41,670 --> 01:05:42,990
Stay ahead of it.
1076
01:05:42,990 --> 01:05:45,410
No one's going to do it for you.
1077
01:05:45,410 --> 01:05:46,016
Right?
1078
01:05:46,830 --> 01:05:48,134
I can understand that.
1079
01:05:50,382 --> 01:05:54,622
Is there any particularly challenging
obstacle that you've faced?
1080
01:05:54,822 --> 01:05:57,242
And if you can think of one, how did you
overcome it?
1081
01:05:57,242 --> 01:05:58,322
Mmm.
1082
01:05:58,722 --> 01:06:00,442
Well, driving.
1083
01:06:00,442 --> 01:06:02,962
The work thing.
1084
01:06:03,162 --> 01:06:04,558
Mmm.
1085
01:06:07,662 --> 01:06:18,502
I was divorced recently and you know
making that decision took a while.
1086
01:06:21,230 --> 01:06:28,870
that you know can I thrive and live on my
own and be independent.
1087
01:06:30,766 --> 01:06:31,738
Mm.
1088
01:06:34,350 --> 01:06:41,630
Yeah, yeah, but like just being unsure
like, will it work?
1089
01:06:41,750 --> 01:06:50,070
Like now, like I just kind of take the
path that sounds more interesting and like
1090
01:06:50,070 --> 01:06:52,590
take life by the words.
1091
01:06:52,590 --> 01:06:53,600
And then you figured out.
1092
01:06:53,600 --> 01:06:55,390
This is my life.
1093
01:06:55,390 --> 01:07:02,530
And I mean, there's there's obstacles and
challenges with everything.
1094
01:07:02,530 --> 01:07:03,142
And.
1095
01:07:03,150 --> 01:07:11,770
I think really just learning from every
experience, negative or positive, like you
1096
01:07:11,770 --> 01:07:14,270
learn so much about yourself.
1097
01:07:14,270 --> 01:07:21,490
When I used to interview kids, younger
people, I would always say, well, what do
1098
01:07:21,490 --> 01:07:22,370
you want?
1099
01:07:22,370 --> 01:07:24,130
Like, what are you looking for?
1100
01:07:24,130 --> 01:07:28,270
Like, it's not just about the company and
what they want.
1101
01:07:28,430 --> 01:07:30,910
Like, where are you gonna fit in?
1102
01:07:30,910 --> 01:07:31,854
What?
1103
01:07:31,854 --> 01:07:38,534
And I'm like, even if it's a job you hate,
you learn so much about it.
1104
01:07:38,534 --> 01:07:45,194
You learn about yourself like, Oh, I need
this kind of job or Oh, I need this kind
1105
01:07:45,194 --> 01:07:46,514
of manager.
1106
01:07:46,654 --> 01:07:50,394
You just learn like that's how life is.
1107
01:07:50,394 --> 01:07:55,274
And like, I guess I've really tried to
just embrace that.
1108
01:07:55,274 --> 01:07:56,834
And I've seen you embrace that.
1109
01:07:56,834 --> 01:08:00,806
And I've seen you, the way I think about
it is when you are.
1110
01:08:00,814 --> 01:08:05,474
faced with bad news and I've seen you be
faced with really challenging situations
1111
01:08:05,474 --> 01:08:07,054
and really bad news.
1112
01:08:07,054 --> 01:08:11,104
It never appears to be bad news to you.
1113
01:08:11,104 --> 01:08:17,754
It appears to be news, just new
information to then react to.
1114
01:08:17,754 --> 01:08:22,294
Um, and you are reticent to label it as
because you don't know why it's going to
1115
01:08:22,294 --> 01:08:22,514
happen.
1116
01:08:22,514 --> 01:08:24,314
You find out later why this happened.
1117
01:08:24,314 --> 01:08:30,014
And you, I feel like do a really nice job
of living out this idea that things happen
1118
01:08:30,014 --> 01:08:30,734
for you.
1119
01:08:30,734 --> 01:08:36,994
Oftentimes and not to you for you for sure
and how you react is everything because
1120
01:08:36,994 --> 01:08:41,834
like But this this is my life, right?
1121
01:08:41,834 --> 01:08:43,134
This is your life.
1122
01:08:43,134 --> 01:08:45,446
This is whoever's life, but
1123
01:08:47,438 --> 01:08:53,438
how you react on getting a diagnosis or
dealing with this or that.
1124
01:08:53,698 --> 01:08:56,018
Like, it's your path.
1125
01:08:56,518 --> 01:08:58,838
Like, do what's gonna make you happy.
1126
01:08:58,838 --> 01:09:01,118
I mean, don't harm others.
1127
01:09:01,118 --> 01:09:08,218
I'm not encouraging that, but really,
like, this is your journey.
1128
01:09:08,218 --> 01:09:12,058
I've really embraced, like, this is my
journey.
1129
01:09:12,058 --> 01:09:16,870
Like, I don't want that path anymore, or I
don't.
1130
01:09:17,261 --> 01:09:18,961
that's not gonna work for me.
1131
01:09:18,961 --> 01:09:20,921
And it's okay.
1132
01:09:21,041 --> 01:09:26,841
Like boundaries, learning boundaries,
boundaries with friends is important and
1133
01:09:26,841 --> 01:09:33,801
just like every experience is like, oh,
that's a new boundary I need to have.
1134
01:09:33,941 --> 01:09:37,061
Like, I just learned from it.
1135
01:09:37,521 --> 01:09:44,294
And, you know, it's probably not how a lot
of people think, but.
1136
01:09:45,837 --> 01:09:52,857
You know, I don't feel like everyone in
the world is here to cause harm or pain.
1137
01:09:52,857 --> 01:09:57,798
There are negative people or bad people,
but...
1138
01:09:59,630 --> 01:10:01,770
really live in fear.
1139
01:10:01,770 --> 01:10:08,310
I just, I'll learn from it if it happens
and move forward and figure out a
1140
01:10:08,310 --> 01:10:09,510
different way.
1141
01:10:09,510 --> 01:10:15,230
But how are you, um, how are you using
your experiences to advocate for others
1142
01:10:15,230 --> 01:10:18,058
with FA or other similar conditions?
1143
01:10:20,270 --> 01:10:24,090
Well, I really want them to know it's
possible.
1144
01:10:24,090 --> 01:10:28,090
Whatever they want to do, it's possible.
1145
01:10:28,090 --> 01:10:30,650
It just might look different.
1146
01:10:30,650 --> 01:10:39,470
It might not be what they thought of their
whole life would happen, but you can give
1147
01:10:39,470 --> 01:10:40,100
up.
1148
01:10:40,100 --> 01:10:42,650
Like you're giving up on yourself.
1149
01:10:43,330 --> 01:10:48,010
Like it makes no sense to me.
1150
01:10:48,010 --> 01:10:50,286
Like I would push.
1151
01:10:50,286 --> 01:10:51,806
Push, push.
1152
01:10:51,806 --> 01:10:58,266
So I just want to like share my
experiences with them and encourage them
1153
01:10:58,266 --> 01:11:01,086
to keep going and keep doing things.
1154
01:11:01,086 --> 01:11:04,226
And I've seen you become a, you've become
a glass artist.
1155
01:11:04,226 --> 01:11:08,506
I don't know when you started, but you've
become a glass artist.
1156
01:11:08,506 --> 01:11:08,616
Okay.
1157
01:11:08,616 --> 01:11:11,986
During COVID and have a glass studio set
up in your house.
1158
01:11:11,986 --> 01:11:17,306
And I've seen you create some beautiful
artwork that has cure FA and then you're
1159
01:11:17,306 --> 01:11:19,630
sending it all over the country to various
families.
1160
01:11:19,630 --> 01:11:20,530
into various.
1161
01:11:20,530 --> 01:11:28,050
So I like if you know when I'm traveling
for the fundraisers or traveling in
1162
01:11:28,050 --> 01:11:35,230
general if I meet other people with my
disability oh that's gonna sound okay I'm
1163
01:11:35,230 --> 01:11:41,170
gonna lose like half your audience right
now if we're talking about clowns I'm
1164
01:11:41,170 --> 01:11:42,000
doing it.
1165
01:11:42,000 --> 01:11:43,610
You're gonna talk about clowns?
1166
01:11:43,610 --> 01:11:44,310
Clowns.
1167
01:11:44,310 --> 01:11:46,766
Okay all right yeah stick with us folks.
1168
01:11:46,766 --> 01:11:47,816
Okay, stick with us.
1169
01:11:47,816 --> 01:11:49,726
We're on the home stretch here.
1170
01:11:50,186 --> 01:11:56,716
When I was a kid, when I grew up, I wanted
to be a clown for years.
1171
01:11:56,716 --> 01:12:02,306
Okay, then I wanted to teach, but I wanted
to be a clown for years because I was
1172
01:12:02,306 --> 01:12:09,006
like, if I can make someone smile, that's
all I want to do.
1173
01:12:09,006 --> 01:12:11,806
So I wasn't a scary clown.
1174
01:12:12,026 --> 01:12:13,646
I was a happy clown.
1175
01:12:13,646 --> 01:12:17,006
So in creating my glass,
1176
01:12:17,006 --> 01:12:26,686
people I meet with the disease, I send
them pieces or they go to the nonprofit
1177
01:12:26,686 --> 01:12:31,906
and go in town auctions or different
events that I go to.
1178
01:12:31,906 --> 01:12:39,506
Just a way to like, if I can make
someone's day and make them smile and be a
1179
01:12:39,506 --> 01:12:40,586
cloud.
1180
01:12:41,486 --> 01:12:42,906
I'm watching.
1181
01:12:43,046 --> 01:12:44,526
I don't know.
1182
01:12:44,590 --> 01:12:48,430
I don't know how much clowns make people
smile versus just kind of freak out these
1183
01:12:48,430 --> 01:12:49,550
days.
1184
01:12:50,010 --> 01:12:52,130
I'm kind of glad you're not a clown.
1185
01:12:52,130 --> 01:12:53,510
You make more people smile this way.
1186
01:12:53,510 --> 01:12:54,250
I promise you.
1187
01:12:54,250 --> 01:12:55,630
Okay.
1188
01:12:55,630 --> 01:13:00,430
I mean, you might freak some people out
sometimes unexpectedly, but not because of
1189
01:13:00,430 --> 01:13:02,410
your, your clown makeup and everything.
1190
01:13:02,410 --> 01:13:03,720
Just when I fall.
1191
01:13:03,720 --> 01:13:07,530
As we're wrapping up here, what
adventures, um, you know, you talk about
1192
01:13:07,530 --> 01:13:08,150
you going to Morocco.
1193
01:13:08,150 --> 01:13:09,740
What kind of goals do you have on the
horizon?
1194
01:13:09,740 --> 01:13:12,470
Anything else we haven't talked about, you
know, as you continue to set?
1195
01:13:12,470 --> 01:13:14,918
I'm going to, um,
1196
01:13:16,270 --> 01:13:22,950
I'm going to be going to a fundraiser for
a fair in Oklahoma city in June.
1197
01:13:23,250 --> 01:13:32,750
I signed up for this wheelchair women's
wheelchair like camp this summer in
1198
01:13:32,750 --> 01:13:33,890
Denver.
1199
01:13:34,310 --> 01:13:42,110
So I've really just stuck with like FA and
never really creeped out and like gotten
1200
01:13:42,110 --> 01:13:45,490
to other people with disabilities.
1201
01:13:45,490 --> 01:13:46,030
So.
1202
01:13:46,030 --> 01:13:52,930
I'm excited just to connect with other
women and go to this women's only
1203
01:13:52,930 --> 01:13:54,490
wheelchair camp.
1204
01:13:54,490 --> 01:14:00,490
Like, they're going to do tennis and rock
climbing and just all the adventurous
1205
01:14:00,490 --> 01:14:02,610
things that I want.
1206
01:14:03,130 --> 01:14:10,450
And, you know, and again, it's with people
that they're all different and all, you
1207
01:14:10,450 --> 01:14:13,474
know, everyone's going to have a
different.
1208
01:14:13,870 --> 01:14:20,710
ability and and I think it's cool like
it's not I can learn something from them
1209
01:14:20,710 --> 01:14:26,750
and they can learn something from me so
that's kind of a different thing I'm
1210
01:14:26,750 --> 01:14:34,730
looking forward to um just a lot of fun
stuff there's a a trike fest in Portland
1211
01:14:34,730 --> 01:14:42,574
this summer in June um so I have a
recumbent bike it's a trike so it's
1212
01:14:42,574 --> 01:14:47,014
two wheels in the back, one in the front,
slower.
1213
01:14:47,894 --> 01:14:52,454
Because I don't have balance, I can't
really ride a regular bike.
1214
01:14:52,454 --> 01:14:55,274
So this is more stable.
1215
01:14:55,274 --> 01:14:58,474
A couple years ago, I had an assist added.
1216
01:14:58,474 --> 01:15:01,574
So it's like an e -bike as well.
1217
01:15:01,574 --> 01:15:05,574
So I can either, I think there's like five
levels on it.
1218
01:15:05,574 --> 01:15:11,234
So you can either have it give me like a
push every time I'm a pedal or a higher
1219
01:15:11,234 --> 01:15:12,750
push or I can just
1220
01:15:12,750 --> 01:15:16,170
sit there and push the button and go.
1221
01:15:16,530 --> 01:15:19,180
But that's been super helpful.
1222
01:15:19,180 --> 01:15:25,690
So the Strike Fest will have over 30
different trikes and some hand cycles,
1223
01:15:25,690 --> 01:15:28,130
some with assist, some without.
1224
01:15:28,130 --> 01:15:35,370
So that'll be kind of cool and I have a
table there for Farah and just like, if I
1225
01:15:35,370 --> 01:15:40,386
can help, you know, say there's like one
new family in the area.
1226
01:15:40,462 --> 01:15:43,092
And they're like, what is this disease?
1227
01:15:43,092 --> 01:15:46,222
If I can help them, that's what I want to
do.
1228
01:15:46,222 --> 01:15:52,602
Like I'm going to have all the like
medical scientific answers, but you know,
1229
01:15:52,602 --> 01:15:59,442
they can meet me as a person and you know,
I can fall out of my chair and they'll
1230
01:15:59,442 --> 01:16:01,982
learn that that's normal.
1231
01:16:02,202 --> 01:16:08,102
I said a lot of times that we have no
shortage of rhetoric around people who are
1232
01:16:08,102 --> 01:16:09,582
talking about how to live.
1233
01:16:09,582 --> 01:16:14,932
a life and how to soak up all the days
that we have and to, to live them fully.
1234
01:16:14,932 --> 01:16:17,202
What we have is a shortage of examples.
1235
01:16:17,202 --> 01:16:18,942
And I love your example.
1236
01:16:18,942 --> 01:16:22,502
Um, just true to form day after day after
day.
1237
01:16:22,502 --> 01:16:27,282
And I'm encouraged by the experimental
drug that you're on because as I have
1238
01:16:27,282 --> 01:16:28,682
known you for probably a year now.
1239
01:16:28,682 --> 01:16:33,402
And so I saw six months of continued
progression and I've seen six months of
1240
01:16:33,402 --> 01:16:34,092
you on the drug.
1241
01:16:34,092 --> 01:16:38,926
And I think, uh, it's been clear to me
that you have shown.
1242
01:16:38,926 --> 01:16:41,266
some improvement in your symptoms.
1243
01:16:41,266 --> 01:16:44,486
I feel like, um, I feel like even your
speech is more fluid and I feel like your
1244
01:16:44,486 --> 01:16:47,846
motor movements more fluid and you know,
you're the stairs.
1245
01:16:47,846 --> 01:16:48,526
I know, I know.
1246
01:16:48,526 --> 01:16:51,086
Thank God you weigh like, you know, 80
pounds.
1247
01:16:51,086 --> 01:16:52,906
I don't know how much you are handwriting.
1248
01:16:52,906 --> 01:16:53,466
Yeah.
1249
01:16:53,466 --> 01:16:57,086
Little things have improved.
1250
01:16:57,186 --> 01:16:58,906
It's slow.
1251
01:16:58,906 --> 01:17:04,376
It was actually, it was actually weird
when it became approved with the drug.
1252
01:17:04,376 --> 01:17:08,206
Like how weird is it?
1253
01:17:08,206 --> 01:17:11,686
say out loud, but I was like, what?
1254
01:17:11,686 --> 01:17:13,286
There's something to approved.
1255
01:17:13,286 --> 01:17:14,586
So it's not a cure.
1256
01:17:14,586 --> 01:17:15,676
It's just a treatment.
1257
01:17:15,676 --> 01:17:20,806
They think a cure will be just a cocktail
of different drugs.
1258
01:17:21,686 --> 01:17:26,066
But I didn't really expect anything to
ever be approved.
1259
01:17:26,066 --> 01:17:27,546
And then I was approved.
1260
01:17:27,546 --> 01:17:32,046
I was like, wait, I don't want a different
life.
1261
01:17:32,046 --> 01:17:35,206
I love my life.
1262
01:17:35,986 --> 01:17:37,294
So like,
1263
01:17:37,294 --> 01:17:39,314
That was a little weird.
1264
01:17:39,314 --> 01:17:43,454
Like weird to actually think about it
feeling better and different.
1265
01:17:43,454 --> 01:17:43,944
Yeah.
1266
01:17:43,944 --> 01:17:53,774
And then, yeah, just, I had never like
processed, like, like a lot of people with
1267
01:17:53,774 --> 01:17:58,334
the disease are like, when there's a cure,
I'll start living.
1268
01:17:58,334 --> 01:17:58,864
Yeah.
1269
01:17:58,864 --> 01:17:59,334
Okay.
1270
01:17:59,334 --> 01:18:00,750
And you never waited.
1271
01:18:00,750 --> 01:18:01,670
No.
1272
01:18:01,670 --> 01:18:01,850
Right.
1273
01:18:01,850 --> 01:18:04,950
It actually never occurred to you that
there would be any sort of a cure, not
1274
01:18:04,950 --> 01:18:05,350
for.
1275
01:18:05,350 --> 01:18:05,920
No.
1276
01:18:05,920 --> 01:18:07,830
And why would I want to wait?
1277
01:18:07,830 --> 01:18:08,550
Like.
1278
01:18:08,550 --> 01:18:09,550
Yeah.
1279
01:18:09,550 --> 01:18:10,090
Yeah.
1280
01:18:10,090 --> 01:18:17,490
It, and like, I don't know, like mentally,
like that just.
1281
01:18:17,490 --> 01:18:18,430
That's interesting.
1282
01:18:18,430 --> 01:18:23,690
Like when there's like here, like, oh, I'm
not going to wait.
1283
01:18:23,690 --> 01:18:26,970
Like, so then it's like, oh, this
treatment.
1284
01:18:26,970 --> 01:18:29,530
So I'm like, well, I don't know.
1285
01:18:29,530 --> 01:18:30,382
I'm like, ah.
1286
01:18:30,382 --> 01:18:34,502
Yeah, I want to do it, but I'm like, I
don't want to go back to work.
1287
01:18:35,122 --> 01:18:39,192
I don't want that life again.
1288
01:18:39,192 --> 01:18:41,662
Like I love this life.
1289
01:18:41,662 --> 01:18:50,002
You know, I feel like the path has been
bumpy, but the path that I'm on is very
1290
01:18:50,002 --> 01:18:52,802
like concrete solid now.
1291
01:18:52,802 --> 01:18:55,392
And like I am at peace.
1292
01:18:55,392 --> 01:18:59,206
Like I've always been at peace with it,
but like,
1293
01:18:59,534 --> 01:19:01,994
I would say even more than ever.
1294
01:19:01,994 --> 01:19:09,654
Like I've never like, I don't think I was
pushing away the walker or the wheelchair
1295
01:19:09,654 --> 01:19:11,734
or any of that.
1296
01:19:14,062 --> 01:19:21,702
So I always, oh, another thing I always
like try, I probably over push, but when I
1297
01:19:21,702 --> 01:19:30,082
meet younger people that need a device
that I can just see they need something, I
1298
01:19:30,082 --> 01:19:32,922
will push and push and push.
1299
01:19:32,922 --> 01:19:36,722
Like come over, let's come over, come over
again next week.
1300
01:19:36,722 --> 01:19:38,262
Like, oh, look at this bugger.
1301
01:19:38,262 --> 01:19:39,662
Oh, look at this one I have.
1302
01:19:39,662 --> 01:19:41,982
Like try it, why don't you try it?
1303
01:19:41,982 --> 01:19:42,510
Like.
1304
01:19:42,510 --> 01:19:50,770
I really want them not only to make it
normal, but if they need that push, I want
1305
01:19:50,770 --> 01:19:52,416
to give it to them.
1306
01:19:53,934 --> 01:19:55,154
It's okay.
1307
01:19:55,154 --> 01:20:03,054
Like one of my friends, that's 19, she
really needed something in middle school.
1308
01:20:03,154 --> 01:20:08,774
So I'd invite her over all the time, try
this walker, try this.
1309
01:20:08,774 --> 01:20:11,104
She didn't, oh, I don't need that stuff.
1310
01:20:11,104 --> 01:20:15,304
But like she could barely walk without
falling.
1311
01:20:15,304 --> 01:20:20,806
And it was like, but your life will be so
much easier.
1312
01:20:21,934 --> 01:20:24,834
But she's like, no, people will know.
1313
01:20:25,174 --> 01:20:31,914
So then she was gonna start high school
and I was like, oh my gosh, what a great
1314
01:20:31,914 --> 01:20:32,794
opportunity.
1315
01:20:32,794 --> 01:20:39,654
Like you're starting a new school, like
you start the school with this device,
1316
01:20:39,674 --> 01:20:43,394
then it won't be like, she goes, no, no,
no.
1317
01:20:43,394 --> 01:20:48,414
She goes, but then the people that will
know me will be like, well, what happened
1318
01:20:48,414 --> 01:20:48,844
to you?
1319
01:20:48,844 --> 01:20:50,502
Oh my gosh, I'm like.
1320
01:20:50,926 --> 01:20:52,526
They already know.
1321
01:20:52,526 --> 01:20:56,286
Like, they already know something is going
on.
1322
01:20:56,286 --> 01:20:59,346
Like, this will help you so much.
1323
01:20:59,346 --> 01:21:04,586
And she just pushed and didn't want to do,
you know, didn't, it's, like, everyone
1324
01:21:04,586 --> 01:21:07,065
takes their own time to get there.
1325
01:21:07,065 --> 01:21:13,846
And now I hear about, like, older people,
not with that faith, but just in general,
1326
01:21:13,846 --> 01:21:17,566
with mobility issues, so they're not
accepting it.
1327
01:21:17,566 --> 01:21:18,630
And it's like,
1328
01:21:20,430 --> 01:21:21,810
Who cares?
1329
01:21:22,070 --> 01:21:24,290
Use the cart at the store.
1330
01:21:24,290 --> 01:21:25,570
Use the tool.
1331
01:21:25,570 --> 01:21:27,670
Like no one cares.
1332
01:21:27,710 --> 01:21:34,810
Like if you can go around Costco and you
like Costco and you want to go, use their
1333
01:21:34,810 --> 01:21:36,210
little scooter.
1334
01:21:36,210 --> 01:21:37,770
It's there to be used.
1335
01:21:37,770 --> 01:21:43,430
Like it's not like someone is going to
look at you in the store and be like, that
1336
01:21:43,430 --> 01:21:46,670
person, you know, like who cares?
1337
01:21:46,670 --> 01:21:47,278
Right.
1338
01:21:47,278 --> 01:21:53,258
Just think of it as like your experience
here on life is your experience.
1339
01:21:53,398 --> 01:21:57,458
Like don't, I don't care what other people
think.
1340
01:21:57,478 --> 01:22:02,678
Like, and I'm probably run them over at
some point if they're mean.
1341
01:22:04,338 --> 01:22:08,938
Well, I, you know, despite the fact that
you weren't expecting things to improve
1342
01:22:08,938 --> 01:22:14,766
with your mobility and speech, I'm, I'm
super excited to see that it is happening.
1343
01:22:14,766 --> 01:22:18,746
you know, having spent more time with you
as a, as a good friend over the year and
1344
01:22:18,746 --> 01:22:19,936
done some traveling and so forth.
1345
01:22:19,936 --> 01:22:22,626
I mean, there's been times I'm accustomed
to just taking you and throwing you over
1346
01:22:22,626 --> 01:22:24,826
my shoulder and taking you up a couple of
flights of steps.
1347
01:22:24,826 --> 01:22:30,006
And recently you're more likely to, with
some help, climb those steps yourself.
1348
01:22:30,006 --> 01:22:34,086
That's not something you were really able
to do very well when we first met.
1349
01:22:34,086 --> 01:22:38,966
And so I see that and, um, and I'm just
really happy that you're able to find
1350
01:22:38,966 --> 01:22:40,974
something right now that's helping you.
1351
01:22:40,974 --> 01:22:41,454
Yeah.
1352
01:22:41,454 --> 01:22:42,394
A little bit more.
1353
01:22:42,394 --> 01:22:43,034
Yeah.
1354
01:22:43,034 --> 01:22:43,914
It's exciting.
1355
01:22:43,914 --> 01:22:48,954
So, so listen, as we wrap up here, um, any
final advice that you have for listeners
1356
01:22:48,954 --> 01:22:53,514
who, maybe they don't have FFA, maybe they
don't have a debilitating sort of a
1357
01:22:53,514 --> 01:22:57,454
situation, but, um, any advice you have
for listeners who are facing their own
1358
01:22:57,454 --> 01:23:00,314
challenges or life changes?
1359
01:23:00,594 --> 01:23:05,074
Be kind, be kind to yourself.
1360
01:23:05,354 --> 01:23:07,394
Be kind to yourself.
1361
01:23:07,394 --> 01:23:10,414
Be patient.
1362
01:23:10,542 --> 01:23:15,142
Like it's not, it's not this cookie
cutter.
1363
01:23:15,142 --> 01:23:17,382
Life isn't a cookie cutter.
1364
01:23:17,382 --> 01:23:20,602
Like everything isn't going to be perfect.
1365
01:23:20,602 --> 01:23:23,102
Just be kind, be patient.
1366
01:23:23,102 --> 01:23:28,912
Like I drop something, I drop things on
the floor all the time.
1367
01:23:28,912 --> 01:23:30,582
And I'm just like, cool.
1368
01:23:30,582 --> 01:23:32,442
Like I don't get frustrated.
1369
01:23:32,442 --> 01:23:38,302
I was trying to think over the weekend
about like, I heard people get like,
1370
01:23:38,302 --> 01:23:40,014
they're talking about anger.
1371
01:23:40,014 --> 01:23:42,214
I don't really have a lot of anger.
1372
01:23:42,214 --> 01:23:51,474
I don't really like, I was trying to think
like when last time I got angry was like,
1373
01:23:51,474 --> 01:23:59,554
eh, like, I don't know, like be kind, be
kind to others, be kind to yourself, be
1374
01:23:59,554 --> 01:24:06,938
patient, like learn from mistakes, from
wins, like.
1375
01:24:09,230 --> 01:24:10,270
Yeah.
1376
01:24:10,270 --> 01:24:12,330
Graceful and have grace.
1377
01:24:12,330 --> 01:24:13,270
I guess.
1378
01:24:13,270 --> 01:24:18,390
You had not seen it before you just said
it, but the way that you extend grace to
1379
01:24:18,390 --> 01:24:23,670
yourself and are kind to yourself is
actually pretty amazing because there have
1380
01:24:23,670 --> 01:24:28,250
been times when I've seen you maybe
something spilled or maybe something broke
1381
01:24:28,250 --> 01:24:28,790
or whatever.
1382
01:24:28,790 --> 01:24:32,530
And what I don't hear you saying is, Oh,
I'm so sorry.
1383
01:24:32,530 --> 01:24:32,890
I'm so sorry.
1384
01:24:32,890 --> 01:24:33,340
I'm so sorry.
1385
01:24:33,340 --> 01:24:34,680
This is, this is the way it happens.
1386
01:24:34,680 --> 01:24:35,770
This is what happens.
1387
01:24:35,770 --> 01:24:37,742
It is so helpful.
1388
01:24:37,742 --> 01:24:44,022
to everyone around you for you to simply
own what's happening in that moment and to
1389
01:24:44,022 --> 01:24:46,862
see you be kind and extend grace to
yourself.
1390
01:24:47,442 --> 01:24:50,862
That is, that is actually something I
hadn't been able to articulate that same
1391
01:24:50,862 --> 01:24:53,162
way, but I love seeing that.
1392
01:24:53,962 --> 01:24:56,882
Well, Michelle, thank you so much for
sharing this.
1393
01:24:56,882 --> 01:25:01,562
I hope that through this episode and
through the future work that you're,
1394
01:25:01,562 --> 01:25:05,702
you're doing and that we can shine a
bright light on what's going with FA and,
1395
01:25:05,702 --> 01:25:07,502
and even if someone is dealing with some
other.
1396
01:25:07,502 --> 01:25:13,862
challenge, whether it be mental, physical,
whatever level of debilitating that it is,
1397
01:25:13,862 --> 01:25:18,102
that, um, that they find a little bit more
hope, a little bit more inspiration, uh,
1398
01:25:18,102 --> 01:25:19,642
and by your example.
1399
01:25:20,522 --> 01:25:21,812
So thank you.
1400
01:25:21,812 --> 01:25:22,622
Yeah.
1401
01:25:26,286 --> 01:25:27,286
Good?
00:00:00,558 --> 00:00:03,138
Your day is about to get better.
2
00:00:03,138 --> 00:00:05,678
Welcome to Cool Change Podcast.
3
00:00:14,978 --> 00:00:19,618
Hosted by Chuck Allen, this podcast shares
captivating conversations that encourage
4
00:00:19,618 --> 00:00:21,418
you to reimagine your life.
5
00:00:21,418 --> 00:00:24,358
After all, you're going to make a change
at some point, right?
6
00:00:24,358 --> 00:00:26,242
Why not make it cool?
7
00:00:29,454 --> 00:00:31,654
Welcome to the podcast.
8
00:00:31,854 --> 00:00:33,074
Thanks.
9
00:00:33,814 --> 00:00:34,594
Yeah.
10
00:00:35,054 --> 00:00:41,374
You know, I have been thinking for a year
that it would be fantastic to get you on
11
00:00:41,374 --> 00:00:47,934
the show because most of my career I've
spent in the company of, or in the
12
00:00:47,934 --> 00:00:53,374
tutelage of very inspirational people as a
management, as a leadership consultant,
13
00:00:53,374 --> 00:00:56,554
and just having the opportunity to work
some really cool people.
14
00:00:56,554 --> 00:00:58,906
And among them,
15
00:00:58,926 --> 00:01:07,326
is my wife who we both know, Rilla, who by
many people's account is one of the most
16
00:01:07,326 --> 00:01:10,286
inspirational leaders that they're aware
of.
17
00:01:10,286 --> 00:01:12,566
And I totally concur with that.
18
00:01:12,566 --> 00:01:18,546
And what I think is so cool is that when
people ask Rilla, even a professional
19
00:01:18,546 --> 00:01:22,126
environment or a personal environment, who
are you inspired by?
20
00:01:22,126 --> 00:01:25,806
She always says your name first.
21
00:01:25,806 --> 00:01:32,666
She's like, let me tell you about Michelle
Huebner because she inspires me all the
22
00:01:32,666 --> 00:01:33,166
time.
23
00:01:33,166 --> 00:01:40,166
And so to be able to sit down and tap into
a little bit about what it is about your
24
00:01:40,166 --> 00:01:47,466
perspective on life that is so enamoring
to so many people is just a true honor.
25
00:01:47,466 --> 00:01:50,826
So I'm super glad that you agreed to come
talk to me.
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00:01:50,826 --> 00:01:53,446
I'm excited to be here.
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00:01:53,614 --> 00:01:59,474
So I want to jump in by asking you to
share a little bit about your journey with
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00:01:59,474 --> 00:02:06,174
Friedreich’s ataxia, otherwise known as FA
and how it's shaped your perspective on
29
00:02:06,174 --> 00:02:06,794
life.
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00:02:06,794 --> 00:02:10,874
You know, we probably need to start with
just a primer on what is it?
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00:02:10,874 --> 00:02:11,954
What is it?
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00:02:11,954 --> 00:02:14,824
Oh, it's a genetic disorder.
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00:02:14,824 --> 00:02:19,054
Um, that affects like movement
coordination.
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00:02:19,254 --> 00:02:21,874
It's kind of different for everyone.
35
00:02:21,934 --> 00:02:26,314
but the same, but different things can
attach with it.
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00:02:26,314 --> 00:02:32,834
So a lot of people, it starts in their
legs and they just lose mobility.
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00:02:33,714 --> 00:02:41,654
Then the nerves kind of don't function
well and then it can continue upwards, I
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00:02:41,654 --> 00:02:42,694
guess.
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00:02:43,074 --> 00:02:49,274
But there's, again, everyone has kind of a
different pattern.
40
00:02:49,274 --> 00:02:50,414
It's not like,
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00:02:50,414 --> 00:02:53,014
the same imprint for everyone.
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00:02:53,014 --> 00:03:00,344
So they say like a life debilitating
genetic disorder, I guess.
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00:03:00,344 --> 00:03:01,914
That does not have a cure.
44
00:03:01,914 --> 00:03:03,934
That does not have a cure.
45
00:03:03,934 --> 00:03:04,654
Yeah.
46
00:03:04,654 --> 00:03:09,114
And most people are diagnosed with this
earlier in life.
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00:03:09,114 --> 00:03:14,774
Earlier, probably when they're like six to
eight years old, they start having some
48
00:03:14,774 --> 00:03:15,814
symptoms.
49
00:03:15,814 --> 00:03:18,318
So typically a,
50
00:03:18,318 --> 00:03:27,278
pediatric neurologist would see these kids
and give them a diagnosis.
51
00:03:27,718 --> 00:03:34,678
There's only one way to get a diagnosis
and that's through a genetic blood test.
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00:03:34,678 --> 00:03:37,798
And that's the only way.
53
00:03:37,798 --> 00:03:41,018
My symptoms started later, so I was 20.
54
00:03:41,018 --> 00:03:43,398
I was really active growing up.
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00:03:43,398 --> 00:03:45,438
I think that kind of helped.
56
00:03:45,438 --> 00:03:46,402
I mean,
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00:03:46,478 --> 00:03:56,158
Obviously if it's genetic and you're born
with it, like why would I have a
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00:03:56,158 --> 00:03:58,598
difference in it than someone else?
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00:03:58,778 --> 00:04:03,958
But there's these things called repeats,
GAA repeats.
60
00:04:03,958 --> 00:04:14,378
So in the DNA strand in I think 1996, they
found the actual genetic DNA that is like
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00:04:14,378 --> 00:04:15,886
malfunctioning.
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00:04:15,886 --> 00:04:18,926
or an error in the DNA.
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00:04:18,926 --> 00:04:20,386
So it's GAA.
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00:04:20,386 --> 00:04:28,586
If you have over 20 repeats of that gene,
you're abnormal and you probably have FA.
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00:04:28,586 --> 00:04:36,506
So I say FA, a lot of people with FA say
FA, doctors, a lot of other people say
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00:04:36,506 --> 00:04:43,606
Friedreich’s or Friedreich’s ataxia, but
FA is so much easier.
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00:04:43,606 --> 00:04:44,366
Yeah.
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00:04:44,366 --> 00:04:49,436
Um, especially if like speech is an issue
and slurring, right?
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00:04:49,436 --> 00:04:51,866
It's just easier for FA.
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00:04:52,086 --> 00:04:58,576
Um, see on one hand, I don't want this
conversation to be about FA because, um,
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00:04:58,576 --> 00:05:04,726
you are, your approach to life, I am quite
sure would be at least as great as it is
72
00:05:04,726 --> 00:05:08,906
right now, even if you weren't afflicted
with this disease.
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00:05:08,906 --> 00:05:14,350
I think it actually changed a lot of my
perspective.
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00:05:14,350 --> 00:05:16,490
So let's talk about that.
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00:05:16,930 --> 00:05:20,810
So symptoms started slowly at 20.
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00:05:20,810 --> 00:05:24,610
I was just dizzy once in a while.
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00:05:24,610 --> 00:05:28,230
Like, you know, when you're on a boat and
you get off the boat, you kind of still
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00:05:28,230 --> 00:05:31,510
feel the motion of the ocean.
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00:05:32,370 --> 00:05:37,030
I would feel that for probably like in my
20s.
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00:05:37,030 --> 00:05:42,990
I felt like I was just off the boat
sometimes and like off, right?
81
00:05:42,990 --> 00:05:44,134
Just off.
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00:05:44,174 --> 00:05:51,414
And then in my thirties, I say I moved
onto the boat because everything was
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00:05:51,414 --> 00:05:57,934
always moving and like, I was so blocking,
but I would always like want to hold
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00:05:57,934 --> 00:06:04,074
things just because I didn't really know
if I was moving or not.
85
00:06:04,074 --> 00:06:08,474
So just like that kept me feeling
grounded, I guess.
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00:06:09,714 --> 00:06:10,894
Let's see.
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00:06:10,894 --> 00:06:12,494
What was your question?
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00:06:12,494 --> 00:06:13,806
Why did it change?
89
00:06:13,806 --> 00:06:14,946
Well, fast forward.
90
00:06:14,946 --> 00:06:22,906
So I was diagnosed at 33, probably 25 or
more doctors, because they didn't know.
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00:06:22,906 --> 00:06:26,126
I mean, they're used to seeing it in kids.
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00:06:26,126 --> 00:06:30,466
They thought in her ear, they thought all
these different things.
93
00:06:30,466 --> 00:06:35,346
They thought, MS, I just wanted to know
what was wrong.
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00:06:35,346 --> 00:06:36,886
Like I knew something.
95
00:06:36,886 --> 00:06:40,646
I knew something was going on, but I
didn't know what.
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00:06:40,646 --> 00:06:42,026
And the doctors.
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00:06:42,510 --> 00:06:47,580
I'm not going to say they didn't care, but
they didn't necessarily care.
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00:06:47,580 --> 00:06:50,840
They were like, just come back next year
and I'll watch you walk.
99
00:06:50,840 --> 00:06:54,630
And I was like, oh, wait, doesn't really
help me.
100
00:06:54,630 --> 00:06:59,210
Like, I want to know what, what can I
expect in the future?
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00:06:59,210 --> 00:07:01,000
What, where do I fit?
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00:07:01,000 --> 00:07:02,660
Where do I fit in this world?
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00:07:02,660 --> 00:07:04,770
Like, I just wanted answers.
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00:07:04,770 --> 00:07:09,810
And then when I got the diagnosis, I was
like, yay.
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00:07:10,030 --> 00:07:16,150
I know what I have and I actually knew
when the doctor told me I was with my dad
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00:07:16,150 --> 00:07:23,670
and my dad, I'm sure all parents are like
devastated by this news, like what do you
107
00:07:23,670 --> 00:07:24,470
have?
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00:07:24,470 --> 00:07:26,360
And I was like, great, let's go home.
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00:07:26,360 --> 00:07:29,510
I know what I have now and I know what
that is.
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00:07:29,510 --> 00:07:31,940
And the doctor was like, you know what
that is?
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00:07:31,940 --> 00:07:35,070
And my dad was like, you know what that
is?
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00:07:35,070 --> 00:07:36,830
And I knew what it was.
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00:07:36,830 --> 00:07:39,502
I grew up, one of my friends growing up,
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00:07:39,502 --> 00:07:46,502
She had FA, her and her brother have it,
and we met in the third grade and I saw
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00:07:46,502 --> 00:07:47,802
her struggles.
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00:07:47,802 --> 00:07:58,522
She had the normal child onset FA and was
wobbly and walked against the walls and
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00:07:58,522 --> 00:08:00,042
furniture.
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00:08:00,462 --> 00:08:02,402
And probably middle school.
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00:08:02,402 --> 00:08:07,302
I don't remember her being in a wheelchair
in high school.
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00:08:08,750 --> 00:08:14,590
But I would see her every couple of years
in my twenties and thirties.
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00:08:14,590 --> 00:08:19,730
And then when I got diagnosed, I saw her a
little bit, but it was, it was kind of
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00:08:19,730 --> 00:08:23,930
hard at the time because she was very
progressed.
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00:08:24,010 --> 00:08:26,430
She, she couldn't transfer.
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00:08:26,430 --> 00:08:29,190
She had a hard time speaking.
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00:08:29,190 --> 00:08:33,510
And by transfer, she had a difficult time
going from her wheelchair to normal
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00:08:33,510 --> 00:08:35,580
seating or, or the toilet.
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00:08:35,580 --> 00:08:36,030
Yeah.
128
00:08:36,030 --> 00:08:36,942
Um,
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00:08:36,942 --> 00:08:39,542
she couldn't really do any of that
herself.
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00:08:39,542 --> 00:08:41,442
So like, okay, I'm diagnosed.
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00:08:41,442 --> 00:08:47,402
And then I see that and it's like, that's
going to be me.
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00:08:47,402 --> 00:08:51,922
Like, you know, and it was just a lot to
take in.
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00:08:51,922 --> 00:08:57,762
So, so on one hand you had dealt with
this, these symptoms for 13 years without
134
00:08:57,762 --> 00:08:59,382
knowing what it was.
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00:08:59,422 --> 00:09:01,802
I mean, I can't imagine going that long.
136
00:09:01,802 --> 00:09:04,910
And then at the same time, finding relief,
137
00:09:04,910 --> 00:09:08,890
when you finally got a diagnosis, because
now you could name it, you could label it,
138
00:09:08,890 --> 00:09:10,570
you knew what it was.
139
00:09:10,570 --> 00:09:14,730
But at the same time, then you kind of saw
someone, ironically, that seems very
140
00:09:14,730 --> 00:09:16,930
strange to me that you knew that had F.
141
00:09:16,930 --> 00:09:18,880
Oh, it's one in 50 ,000.
142
00:09:18,880 --> 00:09:21,250
I should say one in 50 ,000.
143
00:09:21,250 --> 00:09:25,320
So in order, in order to get the typical
F.
144
00:09:25,320 --> 00:09:25,690
A.
145
00:09:25,690 --> 00:09:28,130
You have to have two bad genes.
146
00:09:28,130 --> 00:09:32,430
So you get one gene from your mom, one
gene from your dad.
147
00:09:32,430 --> 00:09:36,450
You have to have two bad genes in order to
get it.
148
00:09:36,450 --> 00:09:42,450
If you have one bad gene and you're just a
carrier, you don't exhibit any of the
149
00:09:42,450 --> 00:09:43,810
symptoms.
150
00:09:44,030 --> 00:09:46,810
So my parents, they didn't know.
151
00:09:46,810 --> 00:09:49,250
No one in my family has had it.
152
00:09:49,250 --> 00:09:52,790
And that's important to know.
153
00:09:52,870 --> 00:09:55,110
You have to have two bad genes.
154
00:09:55,110 --> 00:09:58,570
I think it's something like, I should have
looked at the math.
155
00:09:58,570 --> 00:10:01,646
I think it's like one in 200 people
actually are,
156
00:10:01,646 --> 00:10:07,806
carriers, but you have to have two in
order to have it.
157
00:10:07,886 --> 00:10:14,486
So when you think about FA and you think
about living with it, what comes to mind
158
00:10:14,486 --> 00:10:18,606
when you think about how it's shaped your
perspective on life?
159
00:10:18,606 --> 00:10:25,786
So, so immediately, because like, I'm sure
when everyone receives a diagnosis, they
160
00:10:25,786 --> 00:10:27,026
want to look at all these things.
161
00:10:27,026 --> 00:10:29,426
Like what's my life expectancy?
162
00:10:29,426 --> 00:10:30,182
What's.
163
00:10:30,190 --> 00:10:31,990
What do I have to look forward to?
164
00:10:31,990 --> 00:10:36,910
Like not look forward to, but you know,
what's in the pipeline, right?
165
00:10:38,129 --> 00:10:44,730
I don't think it's like broadcasted often,
but when I was first diagnosed, they said,
166
00:10:44,730 --> 00:10:51,010
okay, if you're a kid with this, your life
expectancy is 36.
167
00:10:51,290 --> 00:10:52,670
It was 33.
168
00:10:52,670 --> 00:10:54,230
You were 33.
169
00:10:54,250 --> 00:10:55,110
Yeah.
170
00:10:55,110 --> 00:10:57,270
So it was like, you want to go there?
171
00:10:57,270 --> 00:10:58,480
Just do it.
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00:10:58,480 --> 00:10:59,598
So it was like,
173
00:10:59,598 --> 00:11:00,478
bucket list.
174
00:11:00,478 --> 00:11:06,238
Like it's hard to make a bucket list of
like things I want to do.
175
00:11:06,238 --> 00:11:08,178
I just do them.
176
00:11:08,178 --> 00:11:10,138
I don't.
177
00:11:10,138 --> 00:11:12,878
Cause you don't know what your expectancy
is.
178
00:11:12,878 --> 00:11:14,598
No one knows.
179
00:11:14,658 --> 00:11:16,118
It's not just me.
180
00:11:16,118 --> 00:11:18,028
It's no one knows.
181
00:11:18,028 --> 00:11:20,238
No one knows, but tomorrow.
182
00:11:20,238 --> 00:11:20,608
Right.
183
00:11:20,608 --> 00:11:23,238
So like, ah, I just want to do it.
184
00:11:23,238 --> 00:11:26,138
So like, I love your idea of the bucket
list.
185
00:11:26,138 --> 00:11:28,158
We had this conversation when I'm in the
car.
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00:11:28,158 --> 00:11:29,646
Uh, it was,
187
00:11:29,646 --> 00:11:33,586
It was, there's a moment where we just,
uh, Rilla and I were riding somewhere with
188
00:11:33,586 --> 00:11:38,946
you and we talked about the concept of
bucket lists and what was on our lists.
189
00:11:39,226 --> 00:11:42,876
And we, uh, Rilla asked you and said, so
what's on your bucket list?
190
00:11:42,876 --> 00:11:47,206
And there was this kind of pause and
you're like, you know, I don't really have
191
00:11:47,206 --> 00:11:47,906
a bucket list.
192
00:11:47,906 --> 00:11:52,146
When I think about it, I just do it, which
is so true.
193
00:11:52,146 --> 00:11:56,366
Cause you had just gone bungee jumping and
you had.
194
00:11:56,366 --> 00:11:59,686
like five times in a row and you had like
in this huge Canyon.
195
00:11:59,686 --> 00:12:01,706
And then you went skydiving.
196
00:12:01,706 --> 00:12:06,216
You looked around until you found a
service that would take you skydiving.
197
00:12:06,216 --> 00:12:09,366
And it was kind of hard to find you had to
drive to get there in pretty good ways.
198
00:12:09,366 --> 00:12:12,556
And this idea that you don't have a bucket
list.
199
00:12:12,556 --> 00:12:16,696
You have an idea of the thing that you
want to do and you just do it.
200
00:12:16,696 --> 00:12:18,626
Therefore the list never takes shape.
201
00:12:18,626 --> 00:12:23,686
Like we suddenly were shocked and
stupefied by this idea that you could just
202
00:12:23,686 --> 00:12:25,506
think of this thing and then just do it.
203
00:12:25,506 --> 00:12:26,350
And it was.
204
00:12:26,350 --> 00:12:27,590
It was amazing.
205
00:12:27,590 --> 00:12:28,330
Yeah.
206
00:12:28,330 --> 00:12:29,050
Yeah.
207
00:12:29,050 --> 00:12:33,610
I mean, you never know how long you have.
208
00:12:33,610 --> 00:12:38,910
And I want to be able to do the things
that I want to do and enjoy.
209
00:12:38,910 --> 00:12:42,310
And if it comes to mind and I'm like, Ooh,
I like it.
210
00:12:42,310 --> 00:12:48,210
And then I feel like, like I'm going to
Morocco in a couple of weeks.
211
00:12:48,210 --> 00:12:53,550
So, you know, I thought about it, some
different things and it just, things
212
00:12:53,550 --> 00:12:56,358
really came into place and it was like,
213
00:12:56,654 --> 00:12:57,934
you should do this.
214
00:12:57,934 --> 00:12:58,904
You should go.
215
00:12:58,904 --> 00:13:03,174
And I found a really great travel agency
over there.
216
00:13:03,174 --> 00:13:04,554
And I was like, you know what?
217
00:13:04,554 --> 00:13:09,234
I can do this trip, a solo trip to
Morocco.
218
00:13:09,594 --> 00:13:11,294
That's what I'm talking about.
219
00:13:11,294 --> 00:13:11,694
Yeah.
220
00:13:11,694 --> 00:13:15,194
You know, who's jumping on a plane and
doing a solo trip to Morocco by
221
00:13:15,194 --> 00:13:19,114
themselves, especially given the
challenges of having to navigate a
222
00:13:19,114 --> 00:13:24,314
wheelchair and all of the intricacies and
complexities that come with solo travel in
223
00:13:24,314 --> 00:13:26,622
general, which are then amplified.
224
00:13:28,366 --> 00:13:31,886
You know, I trust the universe.
225
00:13:31,886 --> 00:13:36,626
Like, I know bad things are, not bad
things are gonna happen, but I know
226
00:13:36,626 --> 00:13:45,346
mistakes or little things that will be
frustrating are gonna happen and okay, I
227
00:13:45,346 --> 00:13:46,456
will learn from it.
228
00:13:46,456 --> 00:13:49,116
That's how life works, right?
229
00:13:49,116 --> 00:13:55,782
Like, you just learn from things and you
move forward and you don't dwell and...
230
00:13:57,006 --> 00:14:01,766
Despite these challenges, I mean, you are
known for living fully embracing
231
00:14:01,766 --> 00:14:02,886
adventure.
232
00:14:02,886 --> 00:14:07,846
Um, so I just mentioned that you've been
skydiving, you're heading to Morocco on
233
00:14:07,846 --> 00:14:10,256
the, you know, you've been bungee jumping
recently.
234
00:14:10,256 --> 00:14:15,426
What other adventures have you been taking
on on this fictitious bucket list that you
235
00:14:15,426 --> 00:14:16,806
just keep checking things off on?
236
00:14:16,806 --> 00:14:24,866
I'm going to totally switch gears and it's
a different adventure in my mind, but like
237
00:14:24,866 --> 00:14:26,468
more important.
238
00:14:26,894 --> 00:14:33,074
So I've done, so there's no cure for FA.
239
00:14:33,074 --> 00:14:37,414
The first treatment was just approved last
year.
240
00:14:37,414 --> 00:14:45,894
So I've done different drug trials to try
to try and find a cure, a treatment.
241
00:14:45,954 --> 00:14:49,234
And it's not for myself.
242
00:14:49,914 --> 00:14:53,874
I love my life.
243
00:14:53,934 --> 00:14:57,514
It's not like, oh, I can live once I have
a cure.
244
00:14:57,514 --> 00:15:06,134
Like, it's not really how I think, but for
the people that are younger or more
245
00:15:06,134 --> 00:15:12,934
progress, like I would like to help them
and I can help them.
246
00:15:12,934 --> 00:15:19,614
If, if I can be shot in the arm and with
drugs that just were tested in monkeys and
247
00:15:19,614 --> 00:15:21,674
I'm next, I'll do it.
248
00:15:21,674 --> 00:15:22,894
Cause I'm like,
249
00:15:22,894 --> 00:15:30,414
If I could be a part of this and like it,
it might kill me, but you know, it's,
250
00:15:30,414 --> 00:15:38,104
it's, it's not just about me and I want to
help others and, and it's not just FA.
251
00:15:38,104 --> 00:15:44,094
Like if, if, if they find something that
works for FA, that's going to also help
252
00:15:44,094 --> 00:15:49,294
the ALS with MS with all these other
things.
253
00:15:49,294 --> 00:15:51,954
Like that's really exciting.
254
00:15:51,954 --> 00:15:52,622
And.
255
00:15:52,622 --> 00:15:59,082
There's all kinds of treatments and the
pipeline and like different trials all the
256
00:15:59,082 --> 00:16:00,342
time with FA.
257
00:16:00,342 --> 00:16:07,572
So the huge nonprofit that I work with is
called Farah, cureFA .org.
258
00:16:07,572 --> 00:16:09,562
CureFA .org.
259
00:16:10,202 --> 00:16:18,042
They really work well with fundraising,
but they work well with the FDA, with drug
260
00:16:18,042 --> 00:16:19,062
companies.
261
00:16:19,062 --> 00:16:21,262
They want...
262
00:16:21,390 --> 00:16:26,650
things, drugs, treatments in the pipeline,
they want a cure.
263
00:16:26,670 --> 00:16:33,010
They work really well with FA patients,
with new FA families.
264
00:16:33,490 --> 00:16:40,530
When I was first diagnosed, there was a
bike ride in Portland called Ride a Taxia,
265
00:16:40,530 --> 00:16:47,050
and I think they have about six rides
around the US every year.
266
00:16:47,050 --> 00:16:49,998
And they did two in Portland.
267
00:16:49,998 --> 00:16:55,718
They've done one in Seattle, they did one
years ago from Seattle to Portland.
268
00:16:55,718 --> 00:17:00,378
And it just raises money, but awareness.
269
00:17:00,678 --> 00:17:05,957
And the huge thing that I love is it
connects people.
270
00:17:05,957 --> 00:17:08,838
So you're like newly diagnosed, like.
271
00:17:10,894 --> 00:17:14,354
One of my friends is 19.
272
00:17:14,354 --> 00:17:16,614
She was diagnosed at 11.
273
00:17:16,614 --> 00:17:19,674
I met her at the spike ride.
274
00:17:19,814 --> 00:17:20,154
Right?
275
00:17:20,154 --> 00:17:25,174
Like her family just received crazy news.
276
00:17:25,174 --> 00:17:28,154
And it's like they can meet other people.
277
00:17:28,154 --> 00:17:29,914
They can be involved.
278
00:17:29,914 --> 00:17:35,914
They can see like, ah, there's more to
this than just the sizzies.
279
00:17:35,914 --> 00:17:38,206
Like there's a community.
280
00:17:39,086 --> 00:17:41,726
It was like so important.
281
00:17:41,726 --> 00:17:45,066
And I know you are super involved in that
community across the country.
282
00:17:45,066 --> 00:17:49,456
Actually you travel and you go to
conferences and various things.
283
00:17:49,456 --> 00:17:56,146
Talk to me about the FA family and what
you experience and kind of what you mean
284
00:17:56,146 --> 00:18:00,166
to those families as best you can.
285
00:18:00,166 --> 00:18:01,226
Hmm.
286
00:18:01,226 --> 00:18:04,886
So it means autonomy.
287
00:18:05,166 --> 00:18:06,758
It really, it's like,
288
00:18:08,846 --> 00:18:14,486
Like this last weekend I was with my
friend who lives in Seattle.
289
00:18:16,785 --> 00:18:19,206
It's just kind of a funny thing.
290
00:18:19,206 --> 00:18:21,206
He has a wheelchair van.
291
00:18:21,206 --> 00:18:22,906
So there's a ramp on the back.
292
00:18:22,906 --> 00:18:31,206
So I was in the back of my scooter and he
was in his motorized chair.
293
00:18:31,206 --> 00:18:36,826
And then we're trapped around and like,
you know, like my face kind of hit the
294
00:18:36,826 --> 00:18:37,826
wall.
295
00:18:38,030 --> 00:18:40,890
And like he saw all of that in slow
motion.
296
00:18:40,890 --> 00:18:43,530
It was hilarious.
297
00:18:43,910 --> 00:18:44,300
Right.
298
00:18:44,300 --> 00:18:45,690
We're just laughing.
299
00:18:45,690 --> 00:18:49,990
And like the thing is, you get each other.
300
00:18:50,210 --> 00:18:52,670
Like we're all together.
301
00:18:52,670 --> 00:18:56,230
If we're all together, we all get each
other.
302
00:18:56,230 --> 00:19:04,238
If one of us laughs or falls down or falls
out of our chair or.
303
00:19:04,238 --> 00:19:06,518
Like no one even notices.
304
00:19:06,778 --> 00:19:08,738
No one even turns their head.
305
00:19:08,738 --> 00:19:11,578
They're just like, I get off the ground,
Michelle.
306
00:19:11,638 --> 00:19:15,378
Like it's comforting and like, it's just
normal.
307
00:19:15,378 --> 00:19:18,398
It makes it very normal.
308
00:19:18,958 --> 00:19:24,978
And just like these, they call it the
family.
309
00:19:24,978 --> 00:19:31,528
So FA in a family, FA is big for, it's
like your FA family.
310
00:19:31,528 --> 00:19:32,638
Yeah.
311
00:19:33,550 --> 00:19:36,990
It's like the first two letters of family
are the capital.
312
00:19:36,990 --> 00:19:37,150
Yeah.
313
00:19:37,150 --> 00:19:37,840
I've seen that written.
314
00:19:37,840 --> 00:19:38,460
Yeah.
315
00:19:38,460 --> 00:19:44,710
And it's like, you're all just almost like
related.
316
00:19:44,710 --> 00:19:47,870
You know, you have this strong bond.
317
00:19:47,870 --> 00:19:55,770
You get each other, you know, I'm, I feel
on the outside a little bit because like,
318
00:19:55,770 --> 00:20:01,550
I'm not the kids and I'm the parents age a
lot of times.
319
00:20:01,550 --> 00:20:03,278
So they're like,
320
00:20:03,278 --> 00:20:07,688
doing this at the kids' table or with the
adults.
321
00:20:07,688 --> 00:20:14,478
And I'm like, oh, so with the adults, you
know, like, I'm talking to say don't feel
322
00:20:14,478 --> 00:20:14,958
welcome.
323
00:20:14,958 --> 00:20:21,738
I feel very welcomed, but I just feel, and
hey, don't feel judged, isn't the word,
324
00:20:21,738 --> 00:20:27,158
but kind of, like, you're not like my kid,
right?
325
00:20:27,158 --> 00:20:30,158
So like, do you really have this?
326
00:20:30,158 --> 00:20:32,430
I don't know, but, but.
327
00:20:32,430 --> 00:20:36,990
Like I want to show them like, gosh, you
can still live.
328
00:20:36,990 --> 00:20:38,270
You can keep going.
329
00:20:38,270 --> 00:20:45,270
You can do things like I feel, I feel it
was perfect.
330
00:20:45,270 --> 00:20:54,590
I know it took a while to get diagnosed,
but like I got focused on raising a son,
331
00:20:54,710 --> 00:20:56,450
having a career.
332
00:20:56,610 --> 00:21:01,170
Like I didn't have a diagnosis where.
333
00:21:02,190 --> 00:21:05,070
I have the option to like give up.
334
00:21:05,070 --> 00:21:10,770
I'm not going to say give up, but kind of
like, you never took your foot off the
335
00:21:10,770 --> 00:21:14,470
accelerator because you didn't actually
have a diagnosis and you didn't know what
336
00:21:14,470 --> 00:21:15,110
it was.
337
00:21:15,110 --> 00:21:19,009
And you sort of continued into push and to
drive.
338
00:21:19,030 --> 00:21:19,410
Always.
339
00:21:19,410 --> 00:21:25,250
And I think like, for me, I think it
worked out exactly how it should.
340
00:21:25,250 --> 00:21:30,790
You know, if some people don't have kids
because they don't want to pass this on,
341
00:21:30,790 --> 00:21:31,686
well,
342
00:21:32,526 --> 00:21:39,166
I mean, okay, when I was first diagnosed,
I was like, oh my gosh, I have to get my
343
00:21:39,166 --> 00:21:42,206
son tested, like to see this.
344
00:21:42,206 --> 00:21:45,766
And then I was like, okay, I'm sure it was
a couple of months later.
345
00:21:45,766 --> 00:21:50,546
I was like, well, that would be dumb to
have him tested because then it would be
346
00:21:50,546 --> 00:21:53,486
like, okay, run faster, enjoy it.
347
00:21:53,486 --> 00:22:00,220
Like, no, if you have symptoms, I'll test
you, but there's no purpose.
348
00:22:00,590 --> 00:22:02,250
Um, and testing you.
349
00:22:02,250 --> 00:22:08,350
So your fear might be that had you known
earlier specifically that you had FA,
350
00:22:08,350 --> 00:22:13,990
maybe as a child, as an early adolescent,
then maybe you would have been tempted to
351
00:22:13,990 --> 00:22:17,630
take your foot off the accelerator and
maybe not give up, but maybe give up some
352
00:22:17,630 --> 00:22:18,790
for sure.
353
00:22:18,790 --> 00:22:21,370
And, and it worked out perfect.
354
00:22:21,370 --> 00:22:30,172
And now my son, if down the road, he wants
to have kids, his partner can get tested.
355
00:22:30,510 --> 00:22:34,070
And if she's in the clear, then that's
good.
356
00:22:34,070 --> 00:22:40,530
Cause obviously he has a bad gene from me
because of my two genes, I gave him a bad
357
00:22:40,530 --> 00:22:41,530
gene.
358
00:22:41,530 --> 00:22:44,150
So he doesn't have that option.
359
00:22:45,130 --> 00:22:50,890
Um, but there's I think three or four
trials in the pipeline right now for stem
360
00:22:50,890 --> 00:22:52,570
cell research.
361
00:22:52,810 --> 00:22:55,190
You know, it's, it's all very exciting.
362
00:22:55,190 --> 00:22:57,670
It's just, you're a part of that now.
363
00:22:57,670 --> 00:22:58,180
Yeah.
364
00:22:58,180 --> 00:23:00,250
You're taking this experimental drug.
365
00:23:00,366 --> 00:23:00,816
Yeah.
366
00:23:00,816 --> 00:23:05,466
Which is meant to at least pause symptoms
if not, you know, improve them.
367
00:23:05,466 --> 00:23:05,906
Yeah.
368
00:23:05,906 --> 00:23:12,306
And I think I've done four or five trials
over the years.
369
00:23:12,766 --> 00:23:17,666
They've all been, it's interesting.
370
00:23:17,666 --> 00:23:24,346
It's a whole, um, it's, it's a new
territory for everyone.
371
00:23:24,346 --> 00:23:28,622
Like you literally are taking this after
rats.
372
00:23:28,622 --> 00:23:30,922
are after monkeys, right?
373
00:23:30,922 --> 00:23:38,202
Like pretty scary, but like, I mean, for
some, but I'm just like, I can do it.
374
00:23:38,202 --> 00:23:39,472
Like here's my arm.
375
00:23:39,472 --> 00:23:44,002
I don't want to see the needle, but let's
see how it works.
376
00:23:44,002 --> 00:23:52,282
And this last trial that I did was
probably like two and a half years ago.
377
00:23:52,282 --> 00:23:54,842
It was pretty intense.
378
00:23:54,842 --> 00:23:55,750
So like,
379
00:23:56,046 --> 00:23:59,346
I think it was 10 days in a facility.
380
00:23:59,346 --> 00:24:06,626
I couldn't leave kind of like jail, not
really, but kind of.
381
00:24:06,626 --> 00:24:17,166
Couldn't leave, had like a little bare bed
that I caught to sleep on, cold showers.
382
00:24:17,166 --> 00:24:23,726
Like it wasn't fancy at all, but I was
there for a purpose.
383
00:24:23,726 --> 00:24:26,062
Like, okay, let's do it.
384
00:24:26,062 --> 00:24:34,482
And I took, so I have a driver, which is a
whole other story, but I took my driver
385
00:24:34,482 --> 00:24:41,422
with me as like my caregiver, in case I
need, actually, the main thing I was
386
00:24:41,422 --> 00:24:46,082
concerned about was like getting my bags
through the airport and getting on the
387
00:24:46,082 --> 00:24:48,072
plane and all of that.
388
00:24:48,072 --> 00:24:51,902
So I just brought her, she helped me with
that stuff.
389
00:24:51,902 --> 00:24:56,270
And she jokes that I was her caregiver,
because,
390
00:24:56,270 --> 00:25:02,530
She was very stressed out as like in this
environment, like, what are they doing to
391
00:25:02,530 --> 00:25:03,030
you?
392
00:25:03,030 --> 00:25:05,860
And I was calming her down for most of it.
393
00:25:05,860 --> 00:25:06,780
Like, you're okay.
394
00:25:06,780 --> 00:25:07,450
You're okay.
395
00:25:07,450 --> 00:25:08,350
That's how you do.
396
00:25:08,350 --> 00:25:11,790
I mean, that's some of the things that I
love is that, you know, sometimes you will
397
00:25:11,790 --> 00:25:13,830
go down hard and crash on the floor.
398
00:25:13,830 --> 00:25:21,030
You'll get up with a black eye and you
know, you just refuse to have people help
399
00:25:21,030 --> 00:25:21,270
you.
400
00:25:21,270 --> 00:25:22,030
Like, no, I got this.
401
00:25:22,030 --> 00:25:22,520
I got this.
402
00:25:22,520 --> 00:25:23,060
I'm tough.
403
00:25:23,060 --> 00:25:23,730
I got this.
404
00:25:23,730 --> 00:25:24,850
I'm tough.
405
00:25:25,358 --> 00:25:30,338
and you end up consoling people more than
needing to be consoled, which is just this
406
00:25:30,338 --> 00:25:33,958
wonderful strength of character and
frankly, strength of body at that point.
407
00:25:33,958 --> 00:25:39,058
Well, you know, but I've learned there's a
good balance too.
408
00:25:39,218 --> 00:25:44,778
So last summer I was in a little car wreck
and the first two people that offered to
409
00:25:44,778 --> 00:25:46,748
help, I was like, I'm okay.
410
00:25:46,748 --> 00:25:48,378
Are you okay?
411
00:25:48,378 --> 00:25:48,758
Okay.
412
00:25:48,758 --> 00:25:51,518
Let's just, let's just tell that story
real quick though, because I mean, first
413
00:25:51,518 --> 00:25:55,150
of all, the fact that you would decided
that you wanted to drive again.
414
00:25:55,150 --> 00:25:55,990
Okay.
415
00:25:55,990 --> 00:25:57,960
So I'll back up.
416
00:25:57,960 --> 00:25:59,510
So I'm 46.
417
00:25:59,510 --> 00:26:08,450
So I was maybe, I don't know, 41 or so I
was going to renew my driver's license and
418
00:26:08,450 --> 00:26:14,280
I go in with my wheelchair and they said,
Oh, you're in a wheelchair.
419
00:26:14,280 --> 00:26:16,090
You have to take the drive test.
420
00:26:16,090 --> 00:26:19,330
And I was like, what, what?
421
00:26:19,330 --> 00:26:22,130
You were renewing and, but because you're
in a wheelchair, you had to take a new
422
00:26:22,130 --> 00:26:22,670
test.
423
00:26:22,670 --> 00:26:23,260
Yeah.
424
00:26:23,260 --> 00:26:25,370
Well, cause your legs weren't working
properly, right?
425
00:26:25,370 --> 00:26:31,070
I mean, I bet the wheelchair wasn't, I bet
that was a clue.
426
00:26:31,450 --> 00:26:35,690
No, no, you didn't say that.
427
00:26:35,690 --> 00:26:38,310
Oh, I have to take the test.
428
00:26:38,310 --> 00:26:40,430
So I took it.
429
00:26:40,890 --> 00:26:43,810
Um, I didn't pass.
430
00:26:43,810 --> 00:26:46,470
So in the state of Washington, but just a
second.
431
00:26:46,470 --> 00:26:50,254
So you were there and you got out of your
wheelchair and into a.
432
00:26:50,254 --> 00:26:51,054
Car.
433
00:26:51,054 --> 00:26:53,114
Oh no, I had to like schedule it.
434
00:26:53,114 --> 00:26:53,554
Okay.
435
00:26:53,554 --> 00:26:54,114
Yeah.
436
00:26:54,114 --> 00:26:54,434
Okay.
437
00:26:54,434 --> 00:26:55,594
The next time.
438
00:26:55,594 --> 00:26:56,194
Yes.
439
00:26:56,194 --> 00:26:58,014
I got to pay.
440
00:26:58,014 --> 00:26:59,054
Well, it's her again.
441
00:26:59,054 --> 00:27:07,054
Um, gone to the car and in the state of
Washington, they won't let you use like
442
00:27:07,054 --> 00:27:10,474
your backup camera at all during the test.
443
00:27:10,474 --> 00:27:17,412
So they covered it and man, I really rely
on that thing.
444
00:27:17,412 --> 00:27:17,646
Yeah.
445
00:27:17,646 --> 00:27:18,936
And I'm short.
446
00:27:18,936 --> 00:27:19,966
You're super short.
447
00:27:19,966 --> 00:27:23,526
Let's just admit like, you're not seeing
over the, you're not turning your head and
448
00:27:23,526 --> 00:27:24,566
looking around behind you.
449
00:27:24,566 --> 00:27:24,626
I know.
450
00:27:24,626 --> 00:27:26,806
I was like, ah, I'm learning.
451
00:27:26,806 --> 00:27:32,046
So I didn't like, you know, I hit the curb
parallel parking back around the quarter.
452
00:27:32,046 --> 00:27:36,086
I was, you know, 18 inches away or too
far, right?
453
00:27:36,086 --> 00:27:39,156
So I had all these dings and I didn't
pass.
454
00:27:39,156 --> 00:27:41,546
So I was like, Oh man.
455
00:27:41,546 --> 00:27:44,866
So I was like, okay, I'll get hand
controls.
456
00:27:45,614 --> 00:27:52,014
So hand controls are basically you drive
with your hand and no pedals.
457
00:27:52,014 --> 00:27:57,934
So I had those installed and they said, I
did great.
458
00:27:57,934 --> 00:27:59,914
I didn't need lessons.
459
00:27:59,914 --> 00:28:01,354
You say, you're doing great.
460
00:28:01,354 --> 00:28:02,974
You're fine.
461
00:28:03,174 --> 00:28:05,114
Took my second test.
462
00:28:05,114 --> 00:28:06,474
Didn't pass.
463
00:28:06,534 --> 00:28:09,194
Still couldn't use the backup camera.
464
00:28:09,194 --> 00:28:10,774
Dang it.
465
00:28:11,054 --> 00:28:12,104
But it didn't pass.
466
00:28:12,104 --> 00:28:13,414
And I was like,
467
00:28:14,094 --> 00:28:17,494
And they told me I only had one more
chance.
468
00:28:17,494 --> 00:28:20,054
And I was like, for what?
469
00:28:20,054 --> 00:28:22,064
Like, that's terrifying.
470
00:28:22,064 --> 00:28:24,784
For the rest of your life, you know, one
more shot at this.
471
00:28:24,784 --> 00:28:26,234
Oh my gosh.
472
00:28:26,234 --> 00:28:27,064
Like, really?
473
00:28:27,064 --> 00:28:31,554
So I took like three and a half years off.
474
00:28:31,554 --> 00:28:33,734
I didn't drive at all.
475
00:28:33,734 --> 00:28:35,154
COVID happened.
476
00:28:35,154 --> 00:28:38,374
I didn't have a huge need to drive.
477
00:28:38,374 --> 00:28:41,594
And I have a driver a couple of days a
week.
478
00:28:41,594 --> 00:28:43,046
Um,
479
00:28:43,886 --> 00:28:48,346
I've been paying for car insurance this
whole time.
480
00:28:48,346 --> 00:28:52,086
So I hate to admit it, but I've been
paying for the car insurance.
481
00:28:52,086 --> 00:28:58,846
So last year, one of my goals for the year
was just to either drive or not to drive,
482
00:28:58,846 --> 00:29:00,705
but to figure it out.
483
00:29:01,186 --> 00:29:04,186
Like, why would you decided you were going
to drive again?
484
00:29:04,186 --> 00:29:10,226
Well, well, no, I wanted to take the test
and, and go from there.
485
00:29:10,226 --> 00:29:13,454
And I practiced for.
486
00:29:13,454 --> 00:29:18,034
Well, I went in to talk to them to
schedule it.
487
00:29:18,474 --> 00:29:21,954
Because I had to get my permit then.
488
00:29:22,274 --> 00:29:25,184
Who at Fort Yvette gets a permit?
489
00:29:25,184 --> 00:29:25,974
But whatever.
490
00:29:25,974 --> 00:29:31,874
I had to get a permit, and they would only
give me a permit for like 28 days or
491
00:29:31,874 --> 00:29:32,314
something.
492
00:29:32,314 --> 00:29:36,294
And I was like, but I have a trip in.
493
00:29:36,526 --> 00:29:43,106
I can't learn how to drive 28 days and
they're like, that's how we'll give it to
494
00:29:43,106 --> 00:29:43,626
you for it.
495
00:29:43,626 --> 00:29:47,806
And I was okay, like I'll figure it out.
496
00:29:47,806 --> 00:29:55,326
So it wasn't like overly confident that I
would pass because maybe I'd practiced
497
00:29:55,326 --> 00:30:02,406
with, because with your permit, you have
to have someone who's had their license
498
00:30:02,406 --> 00:30:04,838
for five years or more, right?
499
00:30:05,550 --> 00:30:10,120
My son was like four years at the time, so
I couldn't practice with him.
500
00:30:10,120 --> 00:30:13,050
I didn't have a lot of people I could
practice with.
501
00:30:13,050 --> 00:30:16,910
So I only maybe practiced like eight
times.
502
00:30:16,910 --> 00:30:21,110
And I was like, OK, let's take this test.
503
00:30:21,110 --> 00:30:29,690
Well, I passed and I was like, oh my gosh,
well, now literally now what?
504
00:30:29,690 --> 00:30:33,934
OK, I'm like, I I don't feel.
505
00:30:33,934 --> 00:30:35,194
super comfortable.
506
00:30:35,194 --> 00:30:42,114
So I passed, but I, I had never practiced
getting my wheelchair in and out of the
507
00:30:42,114 --> 00:30:43,254
car.
508
00:30:43,294 --> 00:30:46,114
And that was so hard.
509
00:30:46,114 --> 00:30:50,464
So like, I thought taking their test would
be the hard part.
510
00:30:50,464 --> 00:30:53,474
Oh no, that was actually the easy part.
511
00:30:53,474 --> 00:30:56,534
And then it was like, figuring out what to
do then.
512
00:30:56,534 --> 00:31:00,574
Like, so now I'm still like figuring it
out.
513
00:31:00,574 --> 00:31:02,958
Like, so it's been,
514
00:31:02,958 --> 00:31:04,478
know it would have been a year.
515
00:31:04,478 --> 00:31:10,598
So I drove for like a month, a little over
a month, and I got in a wreck.
516
00:31:10,977 --> 00:31:15,258
And I tried, so I have a walker too.
517
00:31:15,558 --> 00:31:19,578
I've been using a wheelchair for a little
over five years.
518
00:31:19,578 --> 00:31:23,558
I used a walker for four years before
that.
519
00:31:23,558 --> 00:31:29,568
I have a walker at home, but I just use it
very rarely.
520
00:31:30,094 --> 00:31:31,694
I wish I used it more.
521
00:31:31,694 --> 00:31:33,004
I need to use it more.
522
00:31:33,004 --> 00:31:33,994
I will.
523
00:31:33,994 --> 00:31:35,454
I will.
524
00:31:36,514 --> 00:31:43,194
So I would use my walker a little bit or
I'd have my walker in the car or my
525
00:31:43,194 --> 00:31:48,454
wheelchair in the car and then use the
other device in the house if I was home
526
00:31:48,454 --> 00:31:49,594
alone.
527
00:31:50,354 --> 00:31:54,214
So like my first big outing.
528
00:31:54,214 --> 00:31:56,134
Okay, I'm going to admit it right now.
529
00:31:56,134 --> 00:31:57,714
I like pedicures.
530
00:31:57,714 --> 00:31:59,950
I like getting pedicures.
531
00:31:59,950 --> 00:32:00,530
Nothing wrong with that.
532
00:32:00,530 --> 00:32:01,860
I'm right there with you, so.
533
00:32:01,860 --> 00:32:06,990
My first goal was to drive up to get a
pedicure.
534
00:32:06,990 --> 00:32:14,490
So I drove up with, and I couldn't get my
wheelchair in, so I drove up with my
535
00:32:14,490 --> 00:32:16,390
walker.
536
00:32:16,670 --> 00:32:26,730
And man, you don't realize from the
Hanukkah parking spot, for the 20 steps
537
00:32:26,730 --> 00:32:29,092
you have to get to the door, I was like.
538
00:32:29,102 --> 00:32:30,762
so far.
539
00:32:30,762 --> 00:32:38,282
So I bought in and they know me at the
nail salon and picked my color and they're
540
00:32:38,282 --> 00:32:39,462
like, oh, just sit down.
541
00:32:39,462 --> 00:32:43,122
We'll push you and have a bigger walker
with the seat.
542
00:32:43,122 --> 00:32:44,182
So that was nice.
543
00:32:44,182 --> 00:32:47,602
And I was like, oh, I can relax.
544
00:32:48,002 --> 00:32:50,552
Had my great pedicure afterwards.
545
00:32:50,552 --> 00:32:54,932
They just pushed me back all the way to
the car and even loaded it.
546
00:32:54,932 --> 00:32:55,982
So that was great.
547
00:32:55,982 --> 00:32:58,688
So the next month I was like,
548
00:32:58,734 --> 00:33:01,934
I'm going to try this time with my
wheelchair.
549
00:33:02,634 --> 00:33:03,844
So back for another pedicure.
550
00:33:03,844 --> 00:33:06,234
This time with a wheelchair.
551
00:33:06,274 --> 00:33:07,014
Okay.
552
00:33:07,014 --> 00:33:11,154
I mean, pedicures are neat.
553
00:33:11,154 --> 00:33:11,894
This is critical.
554
00:33:11,894 --> 00:33:17,134
And you, you have a Honda Accord that you
had re outfitted with hand controls.
555
00:33:17,294 --> 00:33:17,714
Okay.
556
00:33:17,714 --> 00:33:18,034
Yeah.
557
00:33:18,034 --> 00:33:18,734
Yeah.
558
00:33:18,734 --> 00:33:19,004
Yeah.
559
00:33:19,004 --> 00:33:20,684
So it's a low, right?
560
00:33:20,684 --> 00:33:26,350
A low with bucket seats and, but, but
being by foot it's.
561
00:33:26,350 --> 00:33:29,590
It's hard to get it up high enough.
562
00:33:29,990 --> 00:33:32,830
So that day.
563
00:33:34,318 --> 00:33:38,758
I have a very light slope on the driveway.
564
00:33:39,578 --> 00:33:42,038
So I was like, okay, I'm gonna take my
wheelchair.
565
00:33:42,038 --> 00:33:44,018
I'm gonna do it myself.
566
00:33:44,198 --> 00:33:47,298
I left like, it's like a four minute ride.
567
00:33:47,298 --> 00:33:50,918
I gave myself like 40 minutes.
568
00:33:50,918 --> 00:33:53,218
I'm just gonna sit in the car.
569
00:33:53,218 --> 00:33:55,638
I'll be, I can do this.
570
00:33:55,638 --> 00:34:01,118
So I went to like take my chair apart and
get it in the backseat.
571
00:34:01,458 --> 00:34:03,950
It was so hard.
572
00:34:03,950 --> 00:34:05,350
It was like 20 minutes.
573
00:34:05,350 --> 00:34:06,650
I was sweating.
574
00:34:06,650 --> 00:34:08,390
I got the wheels off.
575
00:34:08,390 --> 00:34:11,830
My chair decides it wants to like go in
the grass.
576
00:34:11,830 --> 00:34:14,310
So it like floats away like eight feet.
577
00:34:14,310 --> 00:34:16,040
And I'm like, Oh my God.
578
00:34:16,040 --> 00:34:17,570
Cause you're not, cause you don't walk.
579
00:34:17,570 --> 00:34:21,350
I mean, so what do you, how do you even
like standing there to put the, Oh,
580
00:34:21,350 --> 00:34:23,310
leaning against the car.
581
00:34:23,310 --> 00:34:29,650
So then I have to like crawl to get my
chair and drag it back.
582
00:34:29,650 --> 00:34:29,970
Right.
583
00:34:29,970 --> 00:34:33,430
So I'm just like literally sweating.
584
00:34:33,430 --> 00:34:34,190
Right.
585
00:34:34,190 --> 00:34:40,290
I finally get in the car and I'm just
like, I just break down.
586
00:34:40,290 --> 00:34:42,170
Like that was the worst.
587
00:34:42,170 --> 00:34:45,910
And my friend, sort of a great friend next
door.
588
00:34:45,910 --> 00:34:49,520
And she's like, why don't you just tell me
I'll come help you.
589
00:34:49,520 --> 00:34:52,270
And I was like, cause I have to try it.
590
00:34:52,270 --> 00:34:54,880
I have to, I have to figure this out.
591
00:34:54,880 --> 00:35:00,334
And then I got to the nail place and I was
like, yeah, no.
592
00:35:00,334 --> 00:35:04,734
No, I was like, I'm just going to ask
someone.
593
00:35:04,734 --> 00:35:10,634
So I just waited and I saw a nice person,
but I was like, Oh, do you mind helping me
594
00:35:10,634 --> 00:35:12,694
with this real quick?
595
00:35:12,694 --> 00:35:15,454
And you know, most people love to help.
596
00:35:15,454 --> 00:35:18,174
Like they want to be needed.
597
00:35:18,214 --> 00:35:21,954
Like I would love to help someone if they
need it.
598
00:35:21,954 --> 00:35:24,434
They probably want to ask me.
599
00:35:24,934 --> 00:35:26,354
I'll still help.
600
00:35:29,870 --> 00:35:32,690
So, you know, it's different.
601
00:35:32,690 --> 00:35:36,140
It's not like, you know, that was my day,
right?
602
00:35:36,140 --> 00:35:37,170
Getting a pedicure.
603
00:35:37,170 --> 00:35:42,970
I'm like, ah, I did it myself, kind of,
but like, it was great.
604
00:35:42,970 --> 00:35:47,390
But now, okay, so I drove for like a
little over a month.
605
00:35:47,390 --> 00:35:51,250
I had a couple of like long drives of like
45 minutes.
606
00:35:51,250 --> 00:35:53,910
Oh, I thought you were gonna tell me that
the day that you got your pedicure was the
607
00:35:53,910 --> 00:35:54,940
day that you got in Iraq.
608
00:35:54,940 --> 00:35:55,470
No.
609
00:35:55,470 --> 00:35:59,374
Because I wanted to have like a tow truck
joke ready to go.
610
00:35:59,374 --> 00:36:01,734
Totally killed that.
611
00:36:02,074 --> 00:36:03,854
All right, all right.
612
00:36:03,854 --> 00:36:05,264
Killed the dad joke right off the bat.
613
00:36:05,264 --> 00:36:10,514
I've got lots of pedigree stories, so
that's how my water broke too, getting in
614
00:36:10,514 --> 00:36:11,164
pedigree.
615
00:36:11,164 --> 00:36:12,834
Oh, okay.
616
00:36:13,494 --> 00:36:14,074
Another day.
617
00:36:14,074 --> 00:36:14,654
Another known fact.
618
00:36:14,654 --> 00:36:15,344
Another day.
619
00:36:15,344 --> 00:36:15,824
Another interview.
620
00:36:15,824 --> 00:36:17,424
There's a nerve on your foot.
621
00:36:17,424 --> 00:36:18,014
Anyway.
622
00:36:18,014 --> 00:36:20,014
Okay, all right, noted.
623
00:36:21,374 --> 00:36:26,104
Yeah, so the day I got in a wreck, it was
just a really long day.
624
00:36:26,104 --> 00:36:27,374
And again,
625
00:36:27,374 --> 00:36:30,374
I couldn't get my wheelchair in the car.
626
00:36:30,374 --> 00:36:34,074
So I had my son put it in the car.
627
00:36:34,074 --> 00:36:37,934
So it was ready for me and he was gone at
work all day.
628
00:36:38,654 --> 00:36:45,974
And again, I don't use my walker a lot,
but that whole morning, breakfast, coffee,
629
00:36:45,974 --> 00:36:51,594
shower, getting dressed, going around the
house, I used my walker that day.
630
00:36:51,594 --> 00:36:54,374
I was so exhausted.
631
00:36:54,534 --> 00:36:56,718
And then I drove like 45 minutes.
632
00:36:56,718 --> 00:36:59,298
visited with a friend.
633
00:37:00,178 --> 00:37:03,618
More, more, you know, that just takes more
energy.
634
00:37:03,918 --> 00:37:06,078
Left her house.
635
00:37:06,598 --> 00:37:11,418
Going to see another friend because you
know, if I'm out and about, I should just
636
00:37:11,418 --> 00:37:13,358
do them all at once.
637
00:37:14,278 --> 00:37:18,318
Left her house, looked both ways at her
stop sign.
638
00:37:18,318 --> 00:37:19,988
Didn't see any cars coming.
639
00:37:19,988 --> 00:37:21,998
Looked again, nothing.
640
00:37:21,998 --> 00:37:26,728
Pulled out and this car came just
screaming up the road.
641
00:37:27,342 --> 00:37:32,422
I don't know what the speed limit was, but
they were going at least 50 or so.
642
00:37:32,422 --> 00:37:39,822
I was going, when I got in a wreck, maybe
10 miles an hour, like I was not going
643
00:37:39,822 --> 00:37:47,062
fast, but they were in my lane and I
couldn't really, there was no like side to
644
00:37:47,062 --> 00:37:49,082
go to the right.
645
00:37:49,082 --> 00:37:55,422
So to avoid like a head on collision,
instead of going into their lane, which
646
00:37:55,422 --> 00:37:56,480
sounds,
647
00:37:56,590 --> 00:37:58,530
Like I should have done.
648
00:37:58,530 --> 00:38:03,790
I over -cracked it and just went straight
to the left and went into the bushes and
649
00:38:03,790 --> 00:38:04,910
trees.
650
00:38:05,430 --> 00:38:10,810
Um, but I look at it as it could have been
a lot worse.
651
00:38:10,810 --> 00:38:13,390
Like, yeah, I remember this story.
652
00:38:13,390 --> 00:38:17,450
Went over the curb down into the bushes,
hit a tree basically.
653
00:38:17,450 --> 00:38:20,510
And then a good Samaritan stopped.
654
00:38:20,510 --> 00:38:21,040
Kneel.
655
00:38:21,040 --> 00:38:21,560
Kneel.
656
00:38:21,560 --> 00:38:23,290
This young guy stopped.
657
00:38:23,450 --> 00:38:24,050
Hold it.
658
00:38:24,050 --> 00:38:26,062
Just let me, just someone is this right.
659
00:38:26,062 --> 00:38:32,522
Did he not come down there and like, he
was like pale, just like ghost while like
660
00:38:32,522 --> 00:38:35,542
freaked out because you couldn't walk.
661
00:38:35,542 --> 00:38:42,262
And he saw a wheelchair and he was like,
did this just happen?
662
00:38:42,262 --> 00:38:42,532
Yeah.
663
00:38:42,532 --> 00:38:46,372
That was after cause cause so I couldn't.
664
00:38:46,372 --> 00:38:50,802
So after I told the other two cars that
stopped, I'm like, no, I'm okay.
665
00:38:50,802 --> 00:38:51,522
Thanks.
666
00:38:51,522 --> 00:38:52,522
Are you okay?
667
00:38:52,522 --> 00:38:52,992
Right.
668
00:38:52,992 --> 00:38:55,474
So then I realized.
669
00:38:55,598 --> 00:38:57,718
my car won't back out.
670
00:38:57,718 --> 00:39:03,118
Like I can't get out because there's like
a juniper tree and bushes.
671
00:39:03,118 --> 00:39:08,398
So I opened my door and I was like I can't
crawl over this stuff.
672
00:39:08,398 --> 00:39:10,938
I'm like actually I do need help.
673
00:39:10,938 --> 00:39:17,758
So the next guy that came, Neil, I was
like yes I do need help.
674
00:39:18,538 --> 00:39:20,808
And I hadn't like hurt nothing.
675
00:39:20,808 --> 00:39:24,376
I didn't hurt myself or get any injuries.
676
00:39:24,398 --> 00:39:30,578
from the wreck, but from attempting the
bushes, I got like a little scrape on my
677
00:39:30,578 --> 00:39:33,198
knee and blood a little bit.
678
00:39:33,198 --> 00:39:37,518
He was so freaked out by this little drop
of blood.
679
00:39:37,518 --> 00:39:40,787
He was like, oh, you must be covered in a
blanket.
680
00:39:40,787 --> 00:39:48,958
And I can't, I was like, okay, like, so he
lifted me over this little bush and gets
681
00:39:48,958 --> 00:39:51,918
me to like a stable spot.
682
00:39:52,558 --> 00:39:53,510
And, um,
683
00:39:53,838 --> 00:39:58,218
And then I said, Oh, can you get my
wheelchair out of the back too?
684
00:39:58,218 --> 00:40:05,878
And he looked at me and he was like, and
he brings it and he goes to this just
685
00:40:05,878 --> 00:40:07,258
happen.
686
00:40:07,258 --> 00:40:10,438
You mean your inability to walk.
687
00:40:10,818 --> 00:40:17,008
I'm like, yes, I carry a wheelchair just
in case I become immobilized.
688
00:40:17,008 --> 00:40:21,048
And then, and then I'm like, he's like,
what else do you need?
689
00:40:21,048 --> 00:40:21,868
I said, I'm good.
690
00:40:21,868 --> 00:40:24,102
My friend will come get me.
691
00:40:24,206 --> 00:40:27,486
I'm like, but we should do a selfie real
quick.
692
00:40:27,486 --> 00:40:29,766
He was like, what?
693
00:40:30,906 --> 00:40:38,286
So I'm a selfie of two of us and he is
just like, so stressed out and like
694
00:40:38,286 --> 00:40:39,566
sweaty.
695
00:40:40,426 --> 00:40:41,686
Oh my God.
696
00:40:41,686 --> 00:40:42,916
He's still telling the story.
697
00:40:42,916 --> 00:40:44,126
You saved my life, Neil.
698
00:40:44,126 --> 00:40:45,246
Thank you so much.
699
00:40:45,246 --> 00:40:46,026
That's great.
700
00:40:46,026 --> 00:40:50,146
Once again, making someone else feel
better because they can barely handle it.
701
00:40:50,146 --> 00:40:51,662
So.
702
00:40:51,662 --> 00:40:53,072
Let's talk about everyday life for a
second.
703
00:40:53,072 --> 00:40:57,142
How do you approach every day to make sure
that you're living to the fullest?
704
00:40:57,142 --> 00:40:58,402
Cause you sure do.
705
00:40:58,402 --> 00:41:03,402
Um, I mean, are there specific routines or
practices that help you stay positive and
706
00:41:03,402 --> 00:41:04,642
motivated?
707
00:41:05,102 --> 00:41:09,542
Well, so I really start, so I have my
driver twice a week.
708
00:41:09,542 --> 00:41:14,282
I really, there's things that I like to do
and really want to do.
709
00:41:14,282 --> 00:41:21,870
And I've just, since I don't work, I've
kind of built these things into my life.
710
00:41:21,870 --> 00:41:27,770
So I go to Pilates twice a week, go to
acupuncture, go to stretching.
711
00:41:27,890 --> 00:41:33,190
Like I do these things to help me overall.
712
00:41:33,190 --> 00:41:40,030
Acupuncture helps me in so many areas,
just being grounded.
713
00:41:40,030 --> 00:41:47,070
But it helps with some neuropathy in my
feet and I can feel things better if I go.
714
00:41:47,070 --> 00:41:49,590
I think pedicures help with that too.
715
00:41:49,590 --> 00:41:50,798
Oh, 100%.
716
00:41:50,798 --> 00:41:52,038
No question.
717
00:41:53,018 --> 00:41:57,858
No, really, if I don't get a picture, I'm
like, no, the massage and everything,
718
00:41:57,858 --> 00:42:04,318
like, I should prep it up next year.
719
00:42:05,938 --> 00:42:14,598
So for me, like, so I start my week, when
I look at my week, I schedule, I'm very
720
00:42:14,598 --> 00:42:18,414
good at scheduling things, so I will
schedule things.
721
00:42:18,414 --> 00:42:21,354
on the days I have heard that I want to
do.
722
00:42:21,354 --> 00:42:30,654
So I also need like time in nature or I
need to do certain errands or go to my 18
723
00:42:30,654 --> 00:42:31,954
doctors or whatever.
724
00:42:31,954 --> 00:42:34,614
I have a lot of doctors, right?
725
00:42:34,614 --> 00:42:37,434
Cardiologists, neurologists, right?
726
00:42:37,434 --> 00:42:40,454
Primary, it just goes on.
727
00:42:40,454 --> 00:42:42,694
So I have to go to appointments.
728
00:42:42,774 --> 00:42:47,566
Like I want to be able to be as
independent as I can.
729
00:42:47,566 --> 00:42:50,526
even though I have a driver and she helps
me.
730
00:42:50,526 --> 00:42:55,626
So we'll go to Trader Joe's, which is like
the best place.
731
00:42:55,866 --> 00:43:00,746
But she'll just like carry all my stuff in
and unload it.
732
00:43:00,746 --> 00:43:02,856
And that just helps me so much.
733
00:43:02,856 --> 00:43:05,846
But I can still do my shopping.
734
00:43:06,126 --> 00:43:13,646
Like for me, having independence is so
important that, and I really want other
735
00:43:13,646 --> 00:43:14,950
people like,
736
00:43:15,726 --> 00:43:18,666
Some people are like, no, I'm disabled.
737
00:43:18,666 --> 00:43:27,986
I don't really want other people to see me
or, but I'm like, for one who cares, like
738
00:43:27,986 --> 00:43:31,116
they're not even probably thinking about
me.
739
00:43:31,116 --> 00:43:34,546
They're probably thinking about
themselves, but it doesn't matter.
740
00:43:34,546 --> 00:43:36,866
Like I'm a human being.
741
00:43:36,866 --> 00:43:42,606
I have the right to shop, to go to the
bathroom, to do whatever.
742
00:43:42,606 --> 00:43:45,614
So I, I will just,
743
00:43:45,614 --> 00:43:47,874
create my day around that.
744
00:43:48,134 --> 00:43:55,814
I don't schedule things too early in the
morning because I like to have my coffee
745
00:43:55,814 --> 00:44:01,674
time and like I probably move a little
slower in the mornings.
746
00:44:01,674 --> 00:44:10,494
I mean people joke that I'm always moving
slow but I don't know like I like my quiet
747
00:44:10,494 --> 00:44:12,694
time and to do what I want.
748
00:44:12,814 --> 00:44:16,474
music or podcasts or different things.
749
00:44:17,794 --> 00:44:21,154
Years ago, I did this like mood tracker.
750
00:44:22,214 --> 00:44:28,394
And it's kind of interesting, but I can't
remember the name of it.
751
00:44:28,394 --> 00:44:34,074
But it like randomly throughout the day,
it would check in on you and like, what's
752
00:44:34,074 --> 00:44:34,984
your mood right?
753
00:44:34,984 --> 00:44:37,794
And at the moment, OK, now what are you
doing?
754
00:44:37,794 --> 00:44:42,982
So at the end of a couple of months, I had
like an analysis and it was like,
755
00:44:43,278 --> 00:44:48,218
Michelle, you are the most happiest when
you are drinking hot tea, when you are
756
00:44:48,218 --> 00:44:53,058
with Abby, when you are listening to music
and podcasts, when you are.
757
00:44:53,058 --> 00:44:59,878
So like, I really like created my life
around these things and the things that
758
00:44:59,878 --> 00:45:01,438
are on the opposite end.
759
00:45:01,438 --> 00:45:05,178
It's like, no, I'm not going to do that
stuff anymore.
760
00:45:05,178 --> 00:45:09,882
So if it's not going to bring me joy or.
761
00:45:10,702 --> 00:45:17,822
if it's taking too much of my energy, like
do you ever hang out with friends and
762
00:45:17,822 --> 00:45:25,902
afterwards you need like a few days off,
like it was exhausting and like you feel
763
00:45:25,902 --> 00:45:33,102
it just took a lot of your energy, then I
kind of, I guess they cut those people out
764
00:45:33,102 --> 00:45:33,982
of my life.
765
00:45:34,062 --> 00:45:40,102
But I do cut down because it's, if, if I'm
not like,
766
00:45:40,910 --> 00:45:45,370
getting a lot of benefit out of it and
it's just taxing on me.
767
00:45:45,370 --> 00:45:47,080
No, I'm not going to do it.
768
00:45:47,080 --> 00:45:52,050
I love that idea that you were actually,
this is a proper use of fitness technology
769
00:45:52,050 --> 00:45:56,110
and wellness technology is that it was
tracking your mood and then you're able to
770
00:45:56,110 --> 00:45:59,650
look at an analysis and figure out like,
so what was I doing when I was in a good
771
00:45:59,650 --> 00:45:59,870
mood?
772
00:45:59,870 --> 00:46:01,350
What was I doing when I was in a bad mood?
773
00:46:01,350 --> 00:46:04,230
And then you just start doing more of the
one.
774
00:46:04,590 --> 00:46:05,010
Yeah.
775
00:46:05,010 --> 00:46:06,060
Radical idea.
776
00:46:06,060 --> 00:46:08,390
Like how easy is that to think about?
777
00:46:08,390 --> 00:46:08,840
Right?
778
00:46:08,840 --> 00:46:10,078
And like,
779
00:46:10,382 --> 00:46:17,582
I was like, oh, this is, and it was all
like at random times, but it was like so
780
00:46:17,582 --> 00:46:18,552
beneficial.
781
00:46:18,552 --> 00:46:24,482
Cause I was like, I'm not going to say
like comfort, comfort stuff, but sometimes
782
00:46:24,482 --> 00:46:30,042
like you need like to just chill or have
comfort things.
783
00:46:30,042 --> 00:46:34,842
And it's like, okay, I'm just going to go
ahead and my G and like, we'll sit in the
784
00:46:34,842 --> 00:46:37,882
corner and turn the music on, but that's
okay.
785
00:46:37,882 --> 00:46:38,862
Like this just.
786
00:46:38,862 --> 00:46:40,452
me what I need.
787
00:46:40,452 --> 00:46:48,882
We all need different things, but learning
very specific about myself was really
788
00:46:48,882 --> 00:46:51,402
important and necessary.
789
00:46:51,402 --> 00:46:53,350
And I don't think like...
790
00:46:54,926 --> 00:47:02,366
probably even five years ago, I don't
think I could say these things are things
791
00:47:02,366 --> 00:47:03,626
that make me happy.
792
00:47:03,626 --> 00:47:09,346
Like I could maybe throw a couple things
out, but it would just be kind of
793
00:47:09,346 --> 00:47:10,306
guessing.
794
00:47:10,306 --> 00:47:15,506
And, and now I'm like, no, that's the data
to back it up.
795
00:47:15,546 --> 00:47:19,226
I bet there are listeners wondering at
this point, like, let's just take a minute
796
00:47:19,226 --> 00:47:22,126
and talk about, so you had a career.
797
00:47:22,126 --> 00:47:25,966
And there's probably people listening as I
would be in like, so you're not working
798
00:47:25,966 --> 00:47:26,846
now.
799
00:47:26,846 --> 00:47:31,866
How is it that you can, you have a driver
to help you a couple of days a week and
800
00:47:31,866 --> 00:47:33,596
you're not working and you did have a
career.
801
00:47:33,596 --> 00:47:37,746
Let's kind of back up a little bit and
like, what did you do and how is it that
802
00:47:37,746 --> 00:47:40,266
you were able to make this work?
803
00:47:40,426 --> 00:47:42,006
Wow.
804
00:47:42,006 --> 00:47:43,006
That's a lot.
805
00:47:43,006 --> 00:47:47,966
So I, so I like to say now like I have a
life balance.
806
00:47:47,966 --> 00:47:49,966
I really had.
807
00:47:50,478 --> 00:47:52,938
Not great work -life balance.
808
00:47:52,938 --> 00:47:54,978
I just worked a lot.
809
00:47:54,978 --> 00:48:05,618
I was in global logistics, so my customers
Were in supply chains they move freight
810
00:48:05,618 --> 00:48:10,958
around the world Kind of like a travel
agent for freight.
811
00:48:10,958 --> 00:48:20,238
I worked on the import side I was there in
19 years really loved
812
00:48:20,238 --> 00:48:30,938
what I did for about 16, 17 of those
years, worked my way up in the company,
813
00:48:30,938 --> 00:48:34,878
was the operations manager when I left.
814
00:48:34,878 --> 00:48:46,998
It was very fast -paced, intense, because
if, like we've all heard about supply
815
00:48:46,998 --> 00:48:49,638
chain issues since COVID, right?
816
00:48:49,638 --> 00:48:50,414
Yeah.
817
00:48:50,414 --> 00:48:53,234
And since the Suez Canal thing.
818
00:48:53,234 --> 00:48:54,294
Yeah.
819
00:48:54,294 --> 00:49:02,374
So like if one airplane is late or one
vessel is late, like that can have a huge
820
00:49:02,374 --> 00:49:04,514
effect on supply chains.
821
00:49:04,514 --> 00:49:12,254
So a lot of my customers, if there was a
delay, which there's always a delay and
822
00:49:12,254 --> 00:49:17,546
with customs, right, there's exams,
there's all these delays.
823
00:49:17,902 --> 00:49:27,402
I would explain my job as kind of like
just super intense and like I barely had a
824
00:49:27,402 --> 00:49:28,482
moment myself.
825
00:49:28,482 --> 00:49:32,542
So I didn't take lunches a lot of time or
breaks.
826
00:49:32,542 --> 00:49:34,822
It was just go, go, go.
827
00:49:34,822 --> 00:49:41,102
And then at six or seven at night, it was
like, okay, I can go home now for, you
828
00:49:41,102 --> 00:49:45,842
know, just basically to sleep and eat and
come back the next day.
829
00:49:45,842 --> 00:49:46,286
So.
830
00:49:46,286 --> 00:49:47,446
I worked a lot.
831
00:49:47,446 --> 00:49:49,126
I still traveled.
832
00:49:50,106 --> 00:49:56,366
You know, I used my vacation days very
well and maximized everything.
833
00:49:56,366 --> 00:50:02,546
Um, but I didn't have a great work life
balance overall and now I just have a life
834
00:50:02,546 --> 00:50:03,046
balance.
835
00:50:03,046 --> 00:50:07,166
So I just have fun and that's, it's great.
836
00:50:07,166 --> 00:50:10,346
It's great that I am able to do this.
837
00:50:10,346 --> 00:50:15,982
Like everyone's like, but you have this
disease and I'm like, but I have the
838
00:50:15,982 --> 00:50:17,742
best life.
839
00:50:17,742 --> 00:50:20,762
Like I wouldn't change it at all.
840
00:50:20,762 --> 00:50:22,802
So I have this career.
841
00:50:25,614 --> 00:50:31,294
You know, I started there in 2001, so I
was 23.
842
00:50:31,294 --> 00:50:35,074
So they kind of saw my whole progression.
843
00:50:35,074 --> 00:50:38,194
So I used nothing, I walked just fine.
844
00:50:38,194 --> 00:50:41,893
And then I walked kind of like a drunk
person.
845
00:50:41,893 --> 00:50:47,314
Later in my 20s and 30s, I walked like a
drunk person.
846
00:50:47,314 --> 00:50:50,474
That's the easiest way to describe it.
847
00:50:50,574 --> 00:50:52,678
Then I just got a walker.
848
00:50:53,710 --> 00:50:59,450
I remember the day I ordered a walker on
Amazon and I had it delivered to the
849
00:50:59,450 --> 00:51:06,890
office and I had my like one of the, I
don't know, warehouse guys, safety guys,
850
00:51:07,030 --> 00:51:12,270
someone had him put it together for me and
like take it around the whole office and
851
00:51:12,270 --> 00:51:18,710
over everywhere just to make sure safely
like it fit through everything that like
852
00:51:18,710 --> 00:51:23,142
he didn't find any weird spots with it or
corners and.
853
00:51:23,374 --> 00:51:26,534
then it was like, okay, I can do this, I
can do this.
854
00:51:26,534 --> 00:51:34,254
And then from that day, I was like, the
walker was like part of me as a human.
855
00:51:34,254 --> 00:51:38,134
Like I didn't go anywhere without it.
856
00:51:38,314 --> 00:51:45,914
And I love, I loved the walker because I
was like, oh, people didn't think I was
857
00:51:45,914 --> 00:51:47,154
drunk off.
858
00:51:47,194 --> 00:51:51,214
I would get cut off all the time and like,
859
00:51:51,214 --> 00:51:55,364
just order a water and they'd be like,
yeah, that's all we're gonna give you.
860
00:51:55,364 --> 00:51:57,184
And I'm like - People thought you were
drunk a lot.
861
00:51:57,184 --> 00:52:00,594
Oh, all the time, all the time, all the
time.
862
00:52:00,594 --> 00:52:04,194
Especially like going into bars and
restaurants.
863
00:52:04,194 --> 00:52:08,414
So your walker and now your wheelchair is
kind of like this - Yeah, and with the
864
00:52:08,414 --> 00:52:12,554
walker, it was like at least I had a
medical device, so I didn't have that
865
00:52:12,554 --> 00:52:13,914
issue anymore.
866
00:52:13,914 --> 00:52:20,270
And I was like, I mean, I hadn't even, I
had talked to like a police officer.
867
00:52:20,270 --> 00:52:22,260
probably in my 30s.
868
00:52:22,260 --> 00:52:25,290
So I was like, well, what do I do?
869
00:52:25,290 --> 00:52:30,570
Like if I get pulled over, you are like,
you know, walk the line for me.
870
00:52:30,570 --> 00:52:32,990
And I'm like, I have a balance issue.
871
00:52:32,990 --> 00:52:39,420
He goes, every day people tell me they
have balance issues that are drunk.
872
00:52:39,420 --> 00:52:42,720
And I'm like, oh, well, what can I do?
873
00:52:42,720 --> 00:52:48,190
He goes, so I'd probably just arrest you
and assume it was drugs if it wasn't, if
874
00:52:48,190 --> 00:52:49,742
you didn't do the, or.
875
00:52:49,742 --> 00:52:52,322
you know, if the breath was zero.
876
00:52:52,322 --> 00:52:57,282
And I'm like, but even if I told you, he's
like, yeah, because I hear that all the
877
00:52:57,282 --> 00:52:57,442
time.
878
00:52:57,442 --> 00:52:59,602
And I was like, what?
879
00:52:59,602 --> 00:53:06,962
So I actually had one of my doctors write
me like a note on their business card just
880
00:53:06,962 --> 00:53:12,038
to say what that was even before I was
diagnosed, I think like.
881
00:53:12,110 --> 00:53:13,760
I was no belt.
882
00:53:13,760 --> 00:53:14,590
This is legit.
883
00:53:14,590 --> 00:53:15,870
She has a legit issue.
884
00:53:15,870 --> 00:53:16,650
She is not in.
885
00:53:16,650 --> 00:53:18,010
That was like my life.
886
00:53:18,010 --> 00:53:19,750
You know, I cared that everywhere.
887
00:53:19,750 --> 00:53:22,890
And then did you start drinking all the
time because you could get away with it?
888
00:53:22,890 --> 00:53:25,370
There was actually one bar in Portland.
889
00:53:25,370 --> 00:53:27,310
They, they wouldn't serve me.
890
00:53:27,310 --> 00:53:34,090
And it was like, we went for a, one of the
guys that worked for me, uh, it was like
891
00:53:34,090 --> 00:53:34,910
his last day.
892
00:53:34,910 --> 00:53:38,710
We had a little go in a way party and they
wouldn't serve me.
893
00:53:38,710 --> 00:53:40,470
And they said, Oh no, you're drunk.
894
00:53:40,470 --> 00:53:41,934
And I said, no.
895
00:53:41,934 --> 00:53:48,654
I'm not drunk, but they had like three
steps and my contact fell out and when I
896
00:53:48,654 --> 00:53:54,674
walked I mean that was not really the
excuse but that didn't help but I walked
897
00:53:54,674 --> 00:54:00,874
extra drunk looking and they said no way
So finally and I said no problem.
898
00:54:00,874 --> 00:54:05,954
I'll just have water so after like two
hours, they said okay We'll give you a
899
00:54:05,954 --> 00:54:06,702
drink now
900
00:54:06,702 --> 00:54:07,382
It's okay.
901
00:54:07,382 --> 00:54:13,822
And I asked for like a double shot, which
is so not like me, but I was like, yeah,
902
00:54:13,822 --> 00:54:15,512
you're gonna give me one drink.
903
00:54:15,512 --> 00:54:18,312
I'm like, I'm going to just mess up you.
904
00:54:18,312 --> 00:54:27,222
And they're like, let's talk a little bit
about how your support system has played a
905
00:54:27,222 --> 00:54:32,382
role in your journey and, and maybe like
what advice you have for others who are on
906
00:54:32,382 --> 00:54:36,186
building and on maintaining a strong
support network.
907
00:54:37,038 --> 00:54:42,788
So I rely a lot on myself.
908
00:54:42,788 --> 00:54:46,738
I don't like to rely on other people.
909
00:54:48,678 --> 00:54:53,386
I mean my dad, I'm very close with my dad
and my son.
910
00:54:55,598 --> 00:54:58,358
and a lot of like friends.
911
00:54:58,358 --> 00:55:05,438
But again, I don't like to rely on anyone
because that can create frustration for
912
00:55:05,438 --> 00:55:07,518
them, for me.
913
00:55:07,518 --> 00:55:13,358
Like I don't want someone to have
expectations that they have to do this or
914
00:55:13,358 --> 00:55:14,178
that.
915
00:55:14,178 --> 00:55:19,658
I'm finding my lawn mode, I have a guy.
916
00:55:19,658 --> 00:55:22,198
I'll figure out how I can do things.
917
00:55:22,198 --> 00:55:24,668
It just might be different than.
918
00:55:24,686 --> 00:55:28,146
what other people do or expect.
919
00:55:28,526 --> 00:55:30,026
And we go back to work.
920
00:55:30,026 --> 00:55:37,746
So I was at work 19 years, had my walker
transitioned to the wheelchair.
921
00:55:37,746 --> 00:55:40,966
I was very excited to get to the
wheelchair.
922
00:55:40,966 --> 00:55:44,286
So I was like, yay, I'm energy.
923
00:55:44,286 --> 00:55:46,706
I won't fall as much.
924
00:55:46,806 --> 00:55:53,646
Like how I would explain using my walker
is like, I'm
925
00:55:53,646 --> 00:55:55,146
I'm slug.
926
00:55:55,146 --> 00:56:00,686
Look, imagine you're a slug and you're
just like pulling your body.
927
00:56:00,686 --> 00:56:03,926
That's like, it was a lot of effort.
928
00:56:03,926 --> 00:56:11,586
And to like, to do my rounds on like talk
to all of my, my team, it would take an
929
00:56:11,586 --> 00:56:13,626
hour or two of walking around.
930
00:56:13,626 --> 00:56:16,586
And that was so much energy.
931
00:56:16,586 --> 00:56:21,358
And I was like, yeah, I'm so good at this
wheelchair.
932
00:56:21,358 --> 00:56:24,578
Like it'll make my life so much easier.
933
00:56:24,578 --> 00:56:31,798
Like a lot of people with FA and other
disabilities, they really have a hard time
934
00:56:31,798 --> 00:56:38,058
accepting devices and like they don't
want, they don't want to be older.
935
00:56:38,058 --> 00:56:41,938
They don't want, they don't want to be
seen.
936
00:56:41,938 --> 00:56:50,258
I say seen that way, but I'm like, if you
can make your independence better and
937
00:56:50,258 --> 00:56:51,046
like,
938
00:56:51,118 --> 00:56:55,458
You can thrive more, like sign me up.
939
00:56:55,458 --> 00:56:56,678
I know.
940
00:56:56,678 --> 00:56:59,518
I've seen you, I've seen you use this to
your advantage.
941
00:56:59,518 --> 00:57:02,738
Some good concert seats here and there.
942
00:57:02,738 --> 00:57:04,938
You know, VIP entrance.
943
00:57:04,938 --> 00:57:07,218
Yeah.
944
00:57:07,218 --> 00:57:13,518
I have seen you not be too bashful about
using what you need in order to see.
945
00:57:13,518 --> 00:57:19,218
It's, you know, life is different, but
like there's perks with it.
946
00:57:19,218 --> 00:57:20,430
Perks like.
947
00:57:20,430 --> 00:57:26,370
the best parking, you know, Disneyland, to
the front of the line, right?
948
00:57:26,750 --> 00:57:34,610
There's benefits and I definitely utilize
all of them and I just don't care what
949
00:57:34,610 --> 00:57:35,910
other people think.
950
00:57:35,910 --> 00:57:42,930
And that's, I think that's really like,
deviated how I live with other people.
951
00:57:42,930 --> 00:57:50,126
I don't, I don't, I don't wanna do
something that would make,
952
00:57:50,126 --> 00:57:54,806
me uncomfortable, but somebody else more
comfortable.
953
00:57:54,946 --> 00:57:59,446
Like there is a, there's a middle ground
somewhere.
954
00:57:59,446 --> 00:58:09,406
Um, so when I got in the wheelchair
working, I was excited, like very excited.
955
00:58:09,406 --> 00:58:15,986
Two, two days, two, two whole days went by
and my boss called me into her office,
956
00:58:15,986 --> 00:58:19,630
closed the door and she had been my
manager.
957
00:58:19,630 --> 00:58:23,390
for probably 15 years.
958
00:58:23,390 --> 00:58:27,190
She actually got me the job with their
company.
959
00:58:27,790 --> 00:58:37,210
I was with the cargo airline before that,
so I knew of this company, but when I left
960
00:58:37,210 --> 00:58:39,960
there, it was like, do you have anything?
961
00:58:39,960 --> 00:58:41,630
Are you guys hiring?
962
00:58:41,930 --> 00:58:49,550
So like, we didn't have the greatest
relationship, but like,
963
00:58:49,550 --> 00:58:53,010
We worked together for a long time.
964
00:58:53,070 --> 00:58:59,810
So two days went by, she called me in and
she said, you know, we were at Javier the
965
00:58:59,810 --> 00:59:02,310
night before with a customer.
966
00:59:03,390 --> 00:59:10,110
And so there was alcohol involved as well,
which would you on balance and then you
967
00:59:10,110 --> 00:59:12,630
add alcohol, it just.
968
00:59:12,830 --> 00:59:17,370
It can be messy, messy to say the least.
969
00:59:17,370 --> 00:59:18,830
So she said.
970
00:59:18,830 --> 00:59:24,510
You know, when you're around customers,
please don't be in your wheelchair.
971
00:59:24,570 --> 00:59:28,010
She's like, you're making them
uncomfortable?
972
00:59:28,010 --> 00:59:29,790
And I was like, what?
973
00:59:29,790 --> 00:59:30,780
I am?
974
00:59:30,780 --> 00:59:34,809
And that was not how I thought.
975
00:59:34,809 --> 00:59:38,790
But then I was like, every day.
976
00:59:38,790 --> 00:59:42,670
So I heard like, oh my God, you're making
your customers uncomfortable.
977
00:59:42,670 --> 00:59:47,110
And my employees, my customers, they were
like my...
978
00:59:47,566 --> 00:59:51,226
That was all I went to work for, was for
them.
979
00:59:51,226 --> 00:59:57,246
And I was like, shoot, like if I'm getting
them uncomfortable, I'm getting my
980
00:59:57,246 --> 00:59:58,766
employees uncomfortable.
981
00:59:59,146 --> 01:00:05,286
So then I would go to work, close my
office door, and just like work in my
982
01:00:05,286 --> 01:00:05,616
office.
983
01:00:05,616 --> 01:00:11,286
And I was like, because I don't want to
make anyone else uncomfortable.
984
01:00:11,406 --> 01:00:16,166
I was like, it seems unbelievable that
you'd have your boss say to you, please do
985
01:00:16,166 --> 01:00:19,786
not use your wheelchair around clients
because it makes them uncomfortable.
986
01:00:20,406 --> 01:00:25,026
Later on, she had said she didn't, she
didn't mean it in that way.
987
01:00:25,026 --> 01:00:29,210
I'm not sure what way she mended, but.
988
01:00:31,726 --> 01:00:34,716
I mean, it all worked perfect.
989
01:00:34,716 --> 01:00:36,126
It worked perfect.
990
01:00:36,126 --> 01:00:38,966
Like it was so painful.
991
01:00:39,546 --> 01:00:42,256
Like I tried for like 10 months.
992
01:00:42,256 --> 01:00:46,226
I was like, OK, I'm not trying for this.
993
01:00:46,266 --> 01:00:49,106
I'm still going to use my wheelchair.
994
01:00:49,366 --> 01:00:54,286
But, you know, like I knew she was wrong,
but it was like.
995
01:00:54,286 --> 01:00:55,916
It just like aided me.
996
01:00:55,916 --> 01:00:56,526
I'm sure.
997
01:00:56,526 --> 01:01:00,218
So one day I was like.
998
01:01:00,558 --> 01:01:03,558
I had a doctor open on Friday.
999
01:01:04,538 --> 01:01:10,944
So I, oh, and when I worked, I really
didn't go to the doctor much, cause like.
1000
01:01:12,878 --> 01:01:16,618
Every hour was a working hour.
1001
01:01:16,618 --> 01:01:20,648
So like to get away from the office was
frowned upon.
1002
01:01:20,648 --> 01:01:23,058
So I was always there.
1003
01:01:23,058 --> 01:01:31,038
And I went to the doctor in the afternoon
and was just like, I don't know, like my
1004
01:01:31,038 --> 01:01:33,878
heart rate was like 130.
1005
01:01:33,878 --> 01:01:35,678
Drive to work.
1006
01:01:35,758 --> 01:01:37,838
It was so high.
1007
01:01:38,178 --> 01:01:42,836
And she was like, well, do you want to
take a month off?
1008
01:01:42,990 --> 01:01:45,950
And I was just like, I'm up.
1009
01:01:46,010 --> 01:01:48,100
Like I can take a month up.
1010
01:01:48,100 --> 01:01:52,330
I can't, I can't hardly come to the
doctor.
1011
01:01:52,750 --> 01:01:54,540
And she was like, sure.
1012
01:01:54,540 --> 01:01:56,490
You can go on a short term disability.
1013
01:01:56,490 --> 01:01:57,550
You take a month off.
1014
01:01:57,550 --> 01:02:00,590
And I was like, was this your doctor
saying this or your boss?
1015
01:02:00,590 --> 01:02:01,680
He was my doctor.
1016
01:02:01,680 --> 01:02:04,710
Your doctor saying it's like a primary
doctor.
1017
01:02:04,710 --> 01:02:09,998
And I was like, and I was like, yeah, I
was like,
1018
01:02:09,998 --> 01:02:11,998
I need a month off.
1019
01:02:11,998 --> 01:02:14,617
I do need a month off.
1020
01:02:14,998 --> 01:02:18,218
Like, and so it was Friday.
1021
01:02:18,218 --> 01:02:19,578
I never went back.
1022
01:02:19,578 --> 01:02:20,878
You never went back.
1023
01:02:20,878 --> 01:02:27,658
No, I took a month off and then went back
to her and she was like, okay, we didn't
1024
01:02:27,658 --> 01:02:28,128
go back.
1025
01:02:28,128 --> 01:02:29,998
And I said, no.
1026
01:02:30,378 --> 01:02:34,118
I'm like, I didn't realize I was so
exhausted.
1027
01:02:34,118 --> 01:02:38,886
Like, I didn't know I was like pushing it.
1028
01:02:39,150 --> 01:02:43,290
I didn't know, you know, say my shoulder
hurt.
1029
01:02:43,290 --> 01:02:45,330
I had no idea my shoulder hurt.
1030
01:02:45,330 --> 01:02:51,070
Cause I would just focus on work, you
know, and like ignore everything else.
1031
01:02:51,070 --> 01:02:54,670
So it was like, no, I need some more time.
1032
01:02:54,670 --> 01:03:04,030
And then I took a little bit more time and
long -term disability was approved and.
1033
01:03:05,150 --> 01:03:06,766
It's fortunate that you had.
1034
01:03:06,766 --> 01:03:09,006
long -term disability set up at that
point.
1035
01:03:09,006 --> 01:03:16,446
And fortunate that I had a diagnosis
because if I didn't have the diagnosis
1036
01:03:16,446 --> 01:03:20,086
that probably wasn't gonna happen.
1037
01:03:21,806 --> 01:03:30,706
So I was like, hmm, let's see, I could go
back to work and deal with all the stress
1038
01:03:30,706 --> 01:03:36,942
and like at that point, like it was very
unhealthy environment.
1039
01:03:36,942 --> 01:03:39,812
not only for me, but so many people there.
1040
01:03:39,812 --> 01:03:44,142
But I was just like, you know, I can't, I
don't want to do this.
1041
01:03:44,142 --> 01:03:47,602
And it paid almost the same.
1042
01:03:48,622 --> 01:03:57,082
Um, so now I get paid not to work and have
fun and like just take care of myself.
1043
01:03:57,082 --> 01:03:57,582
So.
1044
01:03:57,582 --> 01:04:02,072
And to advocate now and to kind of be on
the road and to help other people.
1045
01:04:02,072 --> 01:04:03,022
Yeah.
1046
01:04:03,022 --> 01:04:06,422
You know, I'm curious, you, you have been
an inspiration and continue to be for a
1047
01:04:06,422 --> 01:04:09,322
lot of people, but, um, who inspires you?
1048
01:04:09,322 --> 01:04:11,398
I mean, what do you look to for
inspiration?
1049
01:04:16,622 --> 01:04:21,122
Probably keeping some independence.
1050
01:04:21,202 --> 01:04:23,722
Being able to do things.
1051
01:04:24,682 --> 01:04:28,702
The younger generation, the younger kids
have it.
1052
01:04:28,702 --> 01:04:31,862
The more progressed people have it.
1053
01:04:32,362 --> 01:04:35,602
Like push, push yourself.
1054
01:04:36,062 --> 01:04:38,982
Like, you know, do as much as you can.
1055
01:04:38,982 --> 01:04:43,076
Cause like you hear the saying like, eh.
1056
01:04:45,678 --> 01:04:46,868
lose it or do it.
1057
01:04:46,868 --> 01:04:47,878
What's that saying?
1058
01:04:47,878 --> 01:04:49,048
Oh, do it or lose it.
1059
01:04:49,048 --> 01:04:50,378
Do it or lose it.
1060
01:04:50,378 --> 01:04:56,898
Like it's so true with like this
disability.
1061
01:04:56,898 --> 01:04:59,838
Like you don't walk for a year.
1062
01:04:59,838 --> 01:05:02,038
You probably can't walk.
1063
01:05:02,038 --> 01:05:04,218
Like you have a written bike.
1064
01:05:04,218 --> 01:05:08,218
You're probably going to need a strike or
something different.
1065
01:05:08,218 --> 01:05:12,698
Um, so like, I just keep pushing.
1066
01:05:12,698 --> 01:05:14,578
Like it's so important.
1067
01:05:14,578 --> 01:05:15,398
And
1068
01:05:17,230 --> 01:05:28,910
Selfishly, like when I'm around my friends
that are more disabled, like self
1069
01:05:28,910 --> 01:05:30,210
-suffish.
1070
01:05:30,210 --> 01:05:37,630
But it pushes me like, don't get there,
like move, keep going.
1071
01:05:37,630 --> 01:05:38,690
Yeah.
1072
01:05:38,850 --> 01:05:39,870
Yeah.
1073
01:05:39,870 --> 01:05:40,280
Right.
1074
01:05:40,280 --> 01:05:41,450
Stay ahead.
1075
01:05:41,670 --> 01:05:42,990
Stay ahead of it.
1076
01:05:42,990 --> 01:05:45,410
No one's going to do it for you.
1077
01:05:45,410 --> 01:05:46,016
Right?
1078
01:05:46,830 --> 01:05:48,134
I can understand that.
1079
01:05:50,382 --> 01:05:54,622
Is there any particularly challenging
obstacle that you've faced?
1080
01:05:54,822 --> 01:05:57,242
And if you can think of one, how did you
overcome it?
1081
01:05:57,242 --> 01:05:58,322
Mmm.
1082
01:05:58,722 --> 01:06:00,442
Well, driving.
1083
01:06:00,442 --> 01:06:02,962
The work thing.
1084
01:06:03,162 --> 01:06:04,558
Mmm.
1085
01:06:07,662 --> 01:06:18,502
I was divorced recently and you know
making that decision took a while.
1086
01:06:21,230 --> 01:06:28,870
that you know can I thrive and live on my
own and be independent.
1087
01:06:30,766 --> 01:06:31,738
Mm.
1088
01:06:34,350 --> 01:06:41,630
Yeah, yeah, but like just being unsure
like, will it work?
1089
01:06:41,750 --> 01:06:50,070
Like now, like I just kind of take the
path that sounds more interesting and like
1090
01:06:50,070 --> 01:06:52,590
take life by the words.
1091
01:06:52,590 --> 01:06:53,600
And then you figured out.
1092
01:06:53,600 --> 01:06:55,390
This is my life.
1093
01:06:55,390 --> 01:07:02,530
And I mean, there's there's obstacles and
challenges with everything.
1094
01:07:02,530 --> 01:07:03,142
And.
1095
01:07:03,150 --> 01:07:11,770
I think really just learning from every
experience, negative or positive, like you
1096
01:07:11,770 --> 01:07:14,270
learn so much about yourself.
1097
01:07:14,270 --> 01:07:21,490
When I used to interview kids, younger
people, I would always say, well, what do
1098
01:07:21,490 --> 01:07:22,370
you want?
1099
01:07:22,370 --> 01:07:24,130
Like, what are you looking for?
1100
01:07:24,130 --> 01:07:28,270
Like, it's not just about the company and
what they want.
1101
01:07:28,430 --> 01:07:30,910
Like, where are you gonna fit in?
1102
01:07:30,910 --> 01:07:31,854
What?
1103
01:07:31,854 --> 01:07:38,534
And I'm like, even if it's a job you hate,
you learn so much about it.
1104
01:07:38,534 --> 01:07:45,194
You learn about yourself like, Oh, I need
this kind of job or Oh, I need this kind
1105
01:07:45,194 --> 01:07:46,514
of manager.
1106
01:07:46,654 --> 01:07:50,394
You just learn like that's how life is.
1107
01:07:50,394 --> 01:07:55,274
And like, I guess I've really tried to
just embrace that.
1108
01:07:55,274 --> 01:07:56,834
And I've seen you embrace that.
1109
01:07:56,834 --> 01:08:00,806
And I've seen you, the way I think about
it is when you are.
1110
01:08:00,814 --> 01:08:05,474
faced with bad news and I've seen you be
faced with really challenging situations
1111
01:08:05,474 --> 01:08:07,054
and really bad news.
1112
01:08:07,054 --> 01:08:11,104
It never appears to be bad news to you.
1113
01:08:11,104 --> 01:08:17,754
It appears to be news, just new
information to then react to.
1114
01:08:17,754 --> 01:08:22,294
Um, and you are reticent to label it as
because you don't know why it's going to
1115
01:08:22,294 --> 01:08:22,514
happen.
1116
01:08:22,514 --> 01:08:24,314
You find out later why this happened.
1117
01:08:24,314 --> 01:08:30,014
And you, I feel like do a really nice job
of living out this idea that things happen
1118
01:08:30,014 --> 01:08:30,734
for you.
1119
01:08:30,734 --> 01:08:36,994
Oftentimes and not to you for you for sure
and how you react is everything because
1120
01:08:36,994 --> 01:08:41,834
like But this this is my life, right?
1121
01:08:41,834 --> 01:08:43,134
This is your life.
1122
01:08:43,134 --> 01:08:45,446
This is whoever's life, but
1123
01:08:47,438 --> 01:08:53,438
how you react on getting a diagnosis or
dealing with this or that.
1124
01:08:53,698 --> 01:08:56,018
Like, it's your path.
1125
01:08:56,518 --> 01:08:58,838
Like, do what's gonna make you happy.
1126
01:08:58,838 --> 01:09:01,118
I mean, don't harm others.
1127
01:09:01,118 --> 01:09:08,218
I'm not encouraging that, but really,
like, this is your journey.
1128
01:09:08,218 --> 01:09:12,058
I've really embraced, like, this is my
journey.
1129
01:09:12,058 --> 01:09:16,870
Like, I don't want that path anymore, or I
don't.
1130
01:09:17,261 --> 01:09:18,961
that's not gonna work for me.
1131
01:09:18,961 --> 01:09:20,921
And it's okay.
1132
01:09:21,041 --> 01:09:26,841
Like boundaries, learning boundaries,
boundaries with friends is important and
1133
01:09:26,841 --> 01:09:33,801
just like every experience is like, oh,
that's a new boundary I need to have.
1134
01:09:33,941 --> 01:09:37,061
Like, I just learned from it.
1135
01:09:37,521 --> 01:09:44,294
And, you know, it's probably not how a lot
of people think, but.
1136
01:09:45,837 --> 01:09:52,857
You know, I don't feel like everyone in
the world is here to cause harm or pain.
1137
01:09:52,857 --> 01:09:57,798
There are negative people or bad people,
but...
1138
01:09:59,630 --> 01:10:01,770
really live in fear.
1139
01:10:01,770 --> 01:10:08,310
I just, I'll learn from it if it happens
and move forward and figure out a
1140
01:10:08,310 --> 01:10:09,510
different way.
1141
01:10:09,510 --> 01:10:15,230
But how are you, um, how are you using
your experiences to advocate for others
1142
01:10:15,230 --> 01:10:18,058
with FA or other similar conditions?
1143
01:10:20,270 --> 01:10:24,090
Well, I really want them to know it's
possible.
1144
01:10:24,090 --> 01:10:28,090
Whatever they want to do, it's possible.
1145
01:10:28,090 --> 01:10:30,650
It just might look different.
1146
01:10:30,650 --> 01:10:39,470
It might not be what they thought of their
whole life would happen, but you can give
1147
01:10:39,470 --> 01:10:40,100
up.
1148
01:10:40,100 --> 01:10:42,650
Like you're giving up on yourself.
1149
01:10:43,330 --> 01:10:48,010
Like it makes no sense to me.
1150
01:10:48,010 --> 01:10:50,286
Like I would push.
1151
01:10:50,286 --> 01:10:51,806
Push, push.
1152
01:10:51,806 --> 01:10:58,266
So I just want to like share my
experiences with them and encourage them
1153
01:10:58,266 --> 01:11:01,086
to keep going and keep doing things.
1154
01:11:01,086 --> 01:11:04,226
And I've seen you become a, you've become
a glass artist.
1155
01:11:04,226 --> 01:11:08,506
I don't know when you started, but you've
become a glass artist.
1156
01:11:08,506 --> 01:11:08,616
Okay.
1157
01:11:08,616 --> 01:11:11,986
During COVID and have a glass studio set
up in your house.
1158
01:11:11,986 --> 01:11:17,306
And I've seen you create some beautiful
artwork that has cure FA and then you're
1159
01:11:17,306 --> 01:11:19,630
sending it all over the country to various
families.
1160
01:11:19,630 --> 01:11:20,530
into various.
1161
01:11:20,530 --> 01:11:28,050
So I like if you know when I'm traveling
for the fundraisers or traveling in
1162
01:11:28,050 --> 01:11:35,230
general if I meet other people with my
disability oh that's gonna sound okay I'm
1163
01:11:35,230 --> 01:11:41,170
gonna lose like half your audience right
now if we're talking about clowns I'm
1164
01:11:41,170 --> 01:11:42,000
doing it.
1165
01:11:42,000 --> 01:11:43,610
You're gonna talk about clowns?
1166
01:11:43,610 --> 01:11:44,310
Clowns.
1167
01:11:44,310 --> 01:11:46,766
Okay all right yeah stick with us folks.
1168
01:11:46,766 --> 01:11:47,816
Okay, stick with us.
1169
01:11:47,816 --> 01:11:49,726
We're on the home stretch here.
1170
01:11:50,186 --> 01:11:56,716
When I was a kid, when I grew up, I wanted
to be a clown for years.
1171
01:11:56,716 --> 01:12:02,306
Okay, then I wanted to teach, but I wanted
to be a clown for years because I was
1172
01:12:02,306 --> 01:12:09,006
like, if I can make someone smile, that's
all I want to do.
1173
01:12:09,006 --> 01:12:11,806
So I wasn't a scary clown.
1174
01:12:12,026 --> 01:12:13,646
I was a happy clown.
1175
01:12:13,646 --> 01:12:17,006
So in creating my glass,
1176
01:12:17,006 --> 01:12:26,686
people I meet with the disease, I send
them pieces or they go to the nonprofit
1177
01:12:26,686 --> 01:12:31,906
and go in town auctions or different
events that I go to.
1178
01:12:31,906 --> 01:12:39,506
Just a way to like, if I can make
someone's day and make them smile and be a
1179
01:12:39,506 --> 01:12:40,586
cloud.
1180
01:12:41,486 --> 01:12:42,906
I'm watching.
1181
01:12:43,046 --> 01:12:44,526
I don't know.
1182
01:12:44,590 --> 01:12:48,430
I don't know how much clowns make people
smile versus just kind of freak out these
1183
01:12:48,430 --> 01:12:49,550
days.
1184
01:12:50,010 --> 01:12:52,130
I'm kind of glad you're not a clown.
1185
01:12:52,130 --> 01:12:53,510
You make more people smile this way.
1186
01:12:53,510 --> 01:12:54,250
I promise you.
1187
01:12:54,250 --> 01:12:55,630
Okay.
1188
01:12:55,630 --> 01:13:00,430
I mean, you might freak some people out
sometimes unexpectedly, but not because of
1189
01:13:00,430 --> 01:13:02,410
your, your clown makeup and everything.
1190
01:13:02,410 --> 01:13:03,720
Just when I fall.
1191
01:13:03,720 --> 01:13:07,530
As we're wrapping up here, what
adventures, um, you know, you talk about
1192
01:13:07,530 --> 01:13:08,150
you going to Morocco.
1193
01:13:08,150 --> 01:13:09,740
What kind of goals do you have on the
horizon?
1194
01:13:09,740 --> 01:13:12,470
Anything else we haven't talked about, you
know, as you continue to set?
1195
01:13:12,470 --> 01:13:14,918
I'm going to, um,
1196
01:13:16,270 --> 01:13:22,950
I'm going to be going to a fundraiser for
a fair in Oklahoma city in June.
1197
01:13:23,250 --> 01:13:32,750
I signed up for this wheelchair women's
wheelchair like camp this summer in
1198
01:13:32,750 --> 01:13:33,890
Denver.
1199
01:13:34,310 --> 01:13:42,110
So I've really just stuck with like FA and
never really creeped out and like gotten
1200
01:13:42,110 --> 01:13:45,490
to other people with disabilities.
1201
01:13:45,490 --> 01:13:46,030
So.
1202
01:13:46,030 --> 01:13:52,930
I'm excited just to connect with other
women and go to this women's only
1203
01:13:52,930 --> 01:13:54,490
wheelchair camp.
1204
01:13:54,490 --> 01:14:00,490
Like, they're going to do tennis and rock
climbing and just all the adventurous
1205
01:14:00,490 --> 01:14:02,610
things that I want.
1206
01:14:03,130 --> 01:14:10,450
And, you know, and again, it's with people
that they're all different and all, you
1207
01:14:10,450 --> 01:14:13,474
know, everyone's going to have a
different.
1208
01:14:13,870 --> 01:14:20,710
ability and and I think it's cool like
it's not I can learn something from them
1209
01:14:20,710 --> 01:14:26,750
and they can learn something from me so
that's kind of a different thing I'm
1210
01:14:26,750 --> 01:14:34,730
looking forward to um just a lot of fun
stuff there's a a trike fest in Portland
1211
01:14:34,730 --> 01:14:42,574
this summer in June um so I have a
recumbent bike it's a trike so it's
1212
01:14:42,574 --> 01:14:47,014
two wheels in the back, one in the front,
slower.
1213
01:14:47,894 --> 01:14:52,454
Because I don't have balance, I can't
really ride a regular bike.
1214
01:14:52,454 --> 01:14:55,274
So this is more stable.
1215
01:14:55,274 --> 01:14:58,474
A couple years ago, I had an assist added.
1216
01:14:58,474 --> 01:15:01,574
So it's like an e -bike as well.
1217
01:15:01,574 --> 01:15:05,574
So I can either, I think there's like five
levels on it.
1218
01:15:05,574 --> 01:15:11,234
So you can either have it give me like a
push every time I'm a pedal or a higher
1219
01:15:11,234 --> 01:15:12,750
push or I can just
1220
01:15:12,750 --> 01:15:16,170
sit there and push the button and go.
1221
01:15:16,530 --> 01:15:19,180
But that's been super helpful.
1222
01:15:19,180 --> 01:15:25,690
So the Strike Fest will have over 30
different trikes and some hand cycles,
1223
01:15:25,690 --> 01:15:28,130
some with assist, some without.
1224
01:15:28,130 --> 01:15:35,370
So that'll be kind of cool and I have a
table there for Farah and just like, if I
1225
01:15:35,370 --> 01:15:40,386
can help, you know, say there's like one
new family in the area.
1226
01:15:40,462 --> 01:15:43,092
And they're like, what is this disease?
1227
01:15:43,092 --> 01:15:46,222
If I can help them, that's what I want to
do.
1228
01:15:46,222 --> 01:15:52,602
Like I'm going to have all the like
medical scientific answers, but you know,
1229
01:15:52,602 --> 01:15:59,442
they can meet me as a person and you know,
I can fall out of my chair and they'll
1230
01:15:59,442 --> 01:16:01,982
learn that that's normal.
1231
01:16:02,202 --> 01:16:08,102
I said a lot of times that we have no
shortage of rhetoric around people who are
1232
01:16:08,102 --> 01:16:09,582
talking about how to live.
1233
01:16:09,582 --> 01:16:14,932
a life and how to soak up all the days
that we have and to, to live them fully.
1234
01:16:14,932 --> 01:16:17,202
What we have is a shortage of examples.
1235
01:16:17,202 --> 01:16:18,942
And I love your example.
1236
01:16:18,942 --> 01:16:22,502
Um, just true to form day after day after
day.
1237
01:16:22,502 --> 01:16:27,282
And I'm encouraged by the experimental
drug that you're on because as I have
1238
01:16:27,282 --> 01:16:28,682
known you for probably a year now.
1239
01:16:28,682 --> 01:16:33,402
And so I saw six months of continued
progression and I've seen six months of
1240
01:16:33,402 --> 01:16:34,092
you on the drug.
1241
01:16:34,092 --> 01:16:38,926
And I think, uh, it's been clear to me
that you have shown.
1242
01:16:38,926 --> 01:16:41,266
some improvement in your symptoms.
1243
01:16:41,266 --> 01:16:44,486
I feel like, um, I feel like even your
speech is more fluid and I feel like your
1244
01:16:44,486 --> 01:16:47,846
motor movements more fluid and you know,
you're the stairs.
1245
01:16:47,846 --> 01:16:48,526
I know, I know.
1246
01:16:48,526 --> 01:16:51,086
Thank God you weigh like, you know, 80
pounds.
1247
01:16:51,086 --> 01:16:52,906
I don't know how much you are handwriting.
1248
01:16:52,906 --> 01:16:53,466
Yeah.
1249
01:16:53,466 --> 01:16:57,086
Little things have improved.
1250
01:16:57,186 --> 01:16:58,906
It's slow.
1251
01:16:58,906 --> 01:17:04,376
It was actually, it was actually weird
when it became approved with the drug.
1252
01:17:04,376 --> 01:17:08,206
Like how weird is it?
1253
01:17:08,206 --> 01:17:11,686
say out loud, but I was like, what?
1254
01:17:11,686 --> 01:17:13,286
There's something to approved.
1255
01:17:13,286 --> 01:17:14,586
So it's not a cure.
1256
01:17:14,586 --> 01:17:15,676
It's just a treatment.
1257
01:17:15,676 --> 01:17:20,806
They think a cure will be just a cocktail
of different drugs.
1258
01:17:21,686 --> 01:17:26,066
But I didn't really expect anything to
ever be approved.
1259
01:17:26,066 --> 01:17:27,546
And then I was approved.
1260
01:17:27,546 --> 01:17:32,046
I was like, wait, I don't want a different
life.
1261
01:17:32,046 --> 01:17:35,206
I love my life.
1262
01:17:35,986 --> 01:17:37,294
So like,
1263
01:17:37,294 --> 01:17:39,314
That was a little weird.
1264
01:17:39,314 --> 01:17:43,454
Like weird to actually think about it
feeling better and different.
1265
01:17:43,454 --> 01:17:43,944
Yeah.
1266
01:17:43,944 --> 01:17:53,774
And then, yeah, just, I had never like
processed, like, like a lot of people with
1267
01:17:53,774 --> 01:17:58,334
the disease are like, when there's a cure,
I'll start living.
1268
01:17:58,334 --> 01:17:58,864
Yeah.
1269
01:17:58,864 --> 01:17:59,334
Okay.
1270
01:17:59,334 --> 01:18:00,750
And you never waited.
1271
01:18:00,750 --> 01:18:01,670
No.
1272
01:18:01,670 --> 01:18:01,850
Right.
1273
01:18:01,850 --> 01:18:04,950
It actually never occurred to you that
there would be any sort of a cure, not
1274
01:18:04,950 --> 01:18:05,350
for.
1275
01:18:05,350 --> 01:18:05,920
No.
1276
01:18:05,920 --> 01:18:07,830
And why would I want to wait?
1277
01:18:07,830 --> 01:18:08,550
Like.
1278
01:18:08,550 --> 01:18:09,550
Yeah.
1279
01:18:09,550 --> 01:18:10,090
Yeah.
1280
01:18:10,090 --> 01:18:17,490
It, and like, I don't know, like mentally,
like that just.
1281
01:18:17,490 --> 01:18:18,430
That's interesting.
1282
01:18:18,430 --> 01:18:23,690
Like when there's like here, like, oh, I'm
not going to wait.
1283
01:18:23,690 --> 01:18:26,970
Like, so then it's like, oh, this
treatment.
1284
01:18:26,970 --> 01:18:29,530
So I'm like, well, I don't know.
1285
01:18:29,530 --> 01:18:30,382
I'm like, ah.
1286
01:18:30,382 --> 01:18:34,502
Yeah, I want to do it, but I'm like, I
don't want to go back to work.
1287
01:18:35,122 --> 01:18:39,192
I don't want that life again.
1288
01:18:39,192 --> 01:18:41,662
Like I love this life.
1289
01:18:41,662 --> 01:18:50,002
You know, I feel like the path has been
bumpy, but the path that I'm on is very
1290
01:18:50,002 --> 01:18:52,802
like concrete solid now.
1291
01:18:52,802 --> 01:18:55,392
And like I am at peace.
1292
01:18:55,392 --> 01:18:59,206
Like I've always been at peace with it,
but like,
1293
01:18:59,534 --> 01:19:01,994
I would say even more than ever.
1294
01:19:01,994 --> 01:19:09,654
Like I've never like, I don't think I was
pushing away the walker or the wheelchair
1295
01:19:09,654 --> 01:19:11,734
or any of that.
1296
01:19:14,062 --> 01:19:21,702
So I always, oh, another thing I always
like try, I probably over push, but when I
1297
01:19:21,702 --> 01:19:30,082
meet younger people that need a device
that I can just see they need something, I
1298
01:19:30,082 --> 01:19:32,922
will push and push and push.
1299
01:19:32,922 --> 01:19:36,722
Like come over, let's come over, come over
again next week.
1300
01:19:36,722 --> 01:19:38,262
Like, oh, look at this bugger.
1301
01:19:38,262 --> 01:19:39,662
Oh, look at this one I have.
1302
01:19:39,662 --> 01:19:41,982
Like try it, why don't you try it?
1303
01:19:41,982 --> 01:19:42,510
Like.
1304
01:19:42,510 --> 01:19:50,770
I really want them not only to make it
normal, but if they need that push, I want
1305
01:19:50,770 --> 01:19:52,416
to give it to them.
1306
01:19:53,934 --> 01:19:55,154
It's okay.
1307
01:19:55,154 --> 01:20:03,054
Like one of my friends, that's 19, she
really needed something in middle school.
1308
01:20:03,154 --> 01:20:08,774
So I'd invite her over all the time, try
this walker, try this.
1309
01:20:08,774 --> 01:20:11,104
She didn't, oh, I don't need that stuff.
1310
01:20:11,104 --> 01:20:15,304
But like she could barely walk without
falling.
1311
01:20:15,304 --> 01:20:20,806
And it was like, but your life will be so
much easier.
1312
01:20:21,934 --> 01:20:24,834
But she's like, no, people will know.
1313
01:20:25,174 --> 01:20:31,914
So then she was gonna start high school
and I was like, oh my gosh, what a great
1314
01:20:31,914 --> 01:20:32,794
opportunity.
1315
01:20:32,794 --> 01:20:39,654
Like you're starting a new school, like
you start the school with this device,
1316
01:20:39,674 --> 01:20:43,394
then it won't be like, she goes, no, no,
no.
1317
01:20:43,394 --> 01:20:48,414
She goes, but then the people that will
know me will be like, well, what happened
1318
01:20:48,414 --> 01:20:48,844
to you?
1319
01:20:48,844 --> 01:20:50,502
Oh my gosh, I'm like.
1320
01:20:50,926 --> 01:20:52,526
They already know.
1321
01:20:52,526 --> 01:20:56,286
Like, they already know something is going
on.
1322
01:20:56,286 --> 01:20:59,346
Like, this will help you so much.
1323
01:20:59,346 --> 01:21:04,586
And she just pushed and didn't want to do,
you know, didn't, it's, like, everyone
1324
01:21:04,586 --> 01:21:07,065
takes their own time to get there.
1325
01:21:07,065 --> 01:21:13,846
And now I hear about, like, older people,
not with that faith, but just in general,
1326
01:21:13,846 --> 01:21:17,566
with mobility issues, so they're not
accepting it.
1327
01:21:17,566 --> 01:21:18,630
And it's like,
1328
01:21:20,430 --> 01:21:21,810
Who cares?
1329
01:21:22,070 --> 01:21:24,290
Use the cart at the store.
1330
01:21:24,290 --> 01:21:25,570
Use the tool.
1331
01:21:25,570 --> 01:21:27,670
Like no one cares.
1332
01:21:27,710 --> 01:21:34,810
Like if you can go around Costco and you
like Costco and you want to go, use their
1333
01:21:34,810 --> 01:21:36,210
little scooter.
1334
01:21:36,210 --> 01:21:37,770
It's there to be used.
1335
01:21:37,770 --> 01:21:43,430
Like it's not like someone is going to
look at you in the store and be like, that
1336
01:21:43,430 --> 01:21:46,670
person, you know, like who cares?
1337
01:21:46,670 --> 01:21:47,278
Right.
1338
01:21:47,278 --> 01:21:53,258
Just think of it as like your experience
here on life is your experience.
1339
01:21:53,398 --> 01:21:57,458
Like don't, I don't care what other people
think.
1340
01:21:57,478 --> 01:22:02,678
Like, and I'm probably run them over at
some point if they're mean.
1341
01:22:04,338 --> 01:22:08,938
Well, I, you know, despite the fact that
you weren't expecting things to improve
1342
01:22:08,938 --> 01:22:14,766
with your mobility and speech, I'm, I'm
super excited to see that it is happening.
1343
01:22:14,766 --> 01:22:18,746
you know, having spent more time with you
as a, as a good friend over the year and
1344
01:22:18,746 --> 01:22:19,936
done some traveling and so forth.
1345
01:22:19,936 --> 01:22:22,626
I mean, there's been times I'm accustomed
to just taking you and throwing you over
1346
01:22:22,626 --> 01:22:24,826
my shoulder and taking you up a couple of
flights of steps.
1347
01:22:24,826 --> 01:22:30,006
And recently you're more likely to, with
some help, climb those steps yourself.
1348
01:22:30,006 --> 01:22:34,086
That's not something you were really able
to do very well when we first met.
1349
01:22:34,086 --> 01:22:38,966
And so I see that and, um, and I'm just
really happy that you're able to find
1350
01:22:38,966 --> 01:22:40,974
something right now that's helping you.
1351
01:22:40,974 --> 01:22:41,454
Yeah.
1352
01:22:41,454 --> 01:22:42,394
A little bit more.
1353
01:22:42,394 --> 01:22:43,034
Yeah.
1354
01:22:43,034 --> 01:22:43,914
It's exciting.
1355
01:22:43,914 --> 01:22:48,954
So, so listen, as we wrap up here, um, any
final advice that you have for listeners
1356
01:22:48,954 --> 01:22:53,514
who, maybe they don't have FFA, maybe they
don't have a debilitating sort of a
1357
01:22:53,514 --> 01:22:57,454
situation, but, um, any advice you have
for listeners who are facing their own
1358
01:22:57,454 --> 01:23:00,314
challenges or life changes?
1359
01:23:00,594 --> 01:23:05,074
Be kind, be kind to yourself.
1360
01:23:05,354 --> 01:23:07,394
Be kind to yourself.
1361
01:23:07,394 --> 01:23:10,414
Be patient.
1362
01:23:10,542 --> 01:23:15,142
Like it's not, it's not this cookie
cutter.
1363
01:23:15,142 --> 01:23:17,382
Life isn't a cookie cutter.
1364
01:23:17,382 --> 01:23:20,602
Like everything isn't going to be perfect.
1365
01:23:20,602 --> 01:23:23,102
Just be kind, be patient.
1366
01:23:23,102 --> 01:23:28,912
Like I drop something, I drop things on
the floor all the time.
1367
01:23:28,912 --> 01:23:30,582
And I'm just like, cool.
1368
01:23:30,582 --> 01:23:32,442
Like I don't get frustrated.
1369
01:23:32,442 --> 01:23:38,302
I was trying to think over the weekend
about like, I heard people get like,
1370
01:23:38,302 --> 01:23:40,014
they're talking about anger.
1371
01:23:40,014 --> 01:23:42,214
I don't really have a lot of anger.
1372
01:23:42,214 --> 01:23:51,474
I don't really like, I was trying to think
like when last time I got angry was like,
1373
01:23:51,474 --> 01:23:59,554
eh, like, I don't know, like be kind, be
kind to others, be kind to yourself, be
1374
01:23:59,554 --> 01:24:06,938
patient, like learn from mistakes, from
wins, like.
1375
01:24:09,230 --> 01:24:10,270
Yeah.
1376
01:24:10,270 --> 01:24:12,330
Graceful and have grace.
1377
01:24:12,330 --> 01:24:13,270
I guess.
1378
01:24:13,270 --> 01:24:18,390
You had not seen it before you just said
it, but the way that you extend grace to
1379
01:24:18,390 --> 01:24:23,670
yourself and are kind to yourself is
actually pretty amazing because there have
1380
01:24:23,670 --> 01:24:28,250
been times when I've seen you maybe
something spilled or maybe something broke
1381
01:24:28,250 --> 01:24:28,790
or whatever.
1382
01:24:28,790 --> 01:24:32,530
And what I don't hear you saying is, Oh,
I'm so sorry.
1383
01:24:32,530 --> 01:24:32,890
I'm so sorry.
1384
01:24:32,890 --> 01:24:33,340
I'm so sorry.
1385
01:24:33,340 --> 01:24:34,680
This is, this is the way it happens.
1386
01:24:34,680 --> 01:24:35,770
This is what happens.
1387
01:24:35,770 --> 01:24:37,742
It is so helpful.
1388
01:24:37,742 --> 01:24:44,022
to everyone around you for you to simply
own what's happening in that moment and to
1389
01:24:44,022 --> 01:24:46,862
see you be kind and extend grace to
yourself.
1390
01:24:47,442 --> 01:24:50,862
That is, that is actually something I
hadn't been able to articulate that same
1391
01:24:50,862 --> 01:24:53,162
way, but I love seeing that.
1392
01:24:53,962 --> 01:24:56,882
Well, Michelle, thank you so much for
sharing this.
1393
01:24:56,882 --> 01:25:01,562
I hope that through this episode and
through the future work that you're,
1394
01:25:01,562 --> 01:25:05,702
you're doing and that we can shine a
bright light on what's going with FA and,
1395
01:25:05,702 --> 01:25:07,502
and even if someone is dealing with some
other.
1396
01:25:07,502 --> 01:25:13,862
challenge, whether it be mental, physical,
whatever level of debilitating that it is,
1397
01:25:13,862 --> 01:25:18,102
that, um, that they find a little bit more
hope, a little bit more inspiration, uh,
1398
01:25:18,102 --> 01:25:19,642
and by your example.
1399
01:25:20,522 --> 01:25:21,812
So thank you.
1400
01:25:21,812 --> 01:25:22,622
Yeah.
1401
01:25:26,286 --> 01:25:27,286
Good?
