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So, yeah, it hasn't gone away, but because I learned so much about it at such a young age, I feel like now I'm just like, I'm getting better.
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I'm getting more positive. I feel like I'm literally becoming a young adult, because I don't really get upset by it anymore.
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I understand it. Of course, I'm gonna learn more every day, but it's it's just a part of my life now.
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Welcome to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community.
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Welcome back to the uptick. I am thrilled to be here. It's been a couple of months since our last episode. Unfortunately, the state funding for NJ CTS is still up in the air, and we all continue crossing our fingers that the organization gets its funding resumed. However, in the meantime, I've gotten the go ahead to make two new episodes of the uptick. So at least for now, the uptick is back, and this is the first of the two episodes we'll be recording today. I'm speaking with two incredible teenagers from New Jersey, barely teenager. One will be 20 in a couple of days, but Emily and Amanda Muldowney, I met Emily at the Tim Howard Leadership Academy this past August. Emily has Tourette and her sister, Amanda does not.
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However, we still like Amanda.
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How are both of you
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today? I'm doing great. I'm doing good. You know, maybe a good
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place to start would be like, Well, I'll say what's interesting about this episode is we've got two people, one with Tourette's, one without both sisters. And I figured the big theme of this episode will be around sisterhood and how you support each other and just kind of Tourette in the family.
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That's sort of an evergreen topic that's always great to hear more about, because, as we know, Tourette is, yes, it's genetic, and many people have siblings with it. We also have siblings who don't have it, and how it shows up and manifests itself in the family, and navigating that dynamic is something I think all of us can use just more tips and advice and ideas around. So maybe a good place to start would be for Emily, if you want to share a little bit about how your diagnosis came about, and that moment where Tourette's first became part of the family life.
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So I'm the first person, of course, in the family to have it as we know of.
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But I started having tics when I was like 11 or 12, I think. And Well, bad tics at that time. And then I finally got diagnosed this year, actually. And it took a very long time because, like, neurologists were being like, they, like, kept sending me off to other people. And, yeah, but like, I've we've learned that kind of when I was younger.
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We've seen videos that I actually did have tics, but they weren't as bad as when I was like, well as like now, I guess so. Yeah, I'm very happy I have a final diagnosis.
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When, before you had the diagnosis, did you guys, like, within the family, like, make jokes about it, like, before I was diagnosed, and even kind of after, like we did, my tics were kind of like a joke with my siblings in a good, like, loving way. But curious, if you guys had that dynamic,
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go ahead, em, did we? I mean, I don't really think so. I think it was a very new thing for us, because we've never really, you sort of hear about it movies and, like, social media, sort of, but you don't really get informed on it.
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So we didn't really know much about it. So, like, I guess it was sort of like a hesitation as to, like, what was okay and what would be offensive, in a sense.
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And so we, I think we sort of refrained from joking about it because of that?
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Yeah, yeah. You know, humor can be a cope for a lot of people, kind of a way to cope with it, but it's also a delicate thing, and, like, there's sensitivities there to, you know, be navigated, for sure. So maybe we just dive right into it. I would love to hear a little bit about, like, how you've maintained your bond as sisters with Tourette and life and everything that has gone on. What are your thoughts on that?
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Oh, me, okay, that was my cue. But we've had a, I think we've had a pretty tricky childhood, or both of us have, and that really bonded us as sisters, because it became that like we were one of the like we we would always be together, and we would find that comfort in being with each other and having that shared experience. And obviously I can't share an experience with her having Tourette, but I think us having that like emotional bond at our for our childhood has really helped us. Yeah, I What are you thinking?
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I agree. I feel like, Yeah, I agree, like, with our childhood, not like, having a lot of difficulties. I would say, Yeah, we always were together, like, on like, rough days I went to your room. On your rough days, you went to my room, it was kind of like we were each other's therapists, that kind of, so, yeah, I really think that's kind of kept us together, because even I feel like when I got Tourette's, or when I even when I didn't have the diagnosis, it was like a little bump on the road, but we could, but we could stay together, even though, because we've been through so much worse,
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and you guys are pretty close in age, right?
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We're five years. Oh, so not that close, but I guess, close enough where, yeah, similar kind of phases of life, you know, at the same time, how do you support each other? How do you do you help each other? Like Amanda say, Emily's having a lot of ticks and, you know, or CO occurring conditions, it's really flaring that day. What kinds of things might you do?
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I mean, I always tell Emily that my like, my text messages are always open, like, I will always answer if she calls. Obviously, if I'm in class, I can't really do much of anything, but those classes are only two hours. So I'm always available. I try my best to, like, answer the phone. I always try my best to answer her text. I promise I'm not a bad student, but I do answer texts in class, especially Emily's, but I always try my hardest to just be there for her. And I think, I think that's just my personal way. I I think I'm a good listener, right? Yeah, you you, yeah, you are. But I just listen. And I think that really helps. I think I think I see it helps Emily. I think talking about things and not keeping things bottled up is, like, super helpful in just in general. So being able to have that, like, always being able to go to them and not have like, be judged is like, you don't really find much of that in, like, the world. You can't really find many people that won't judge you. But I know Emily won't. She might make fun of me, but she won't judge me.
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Yeah, I agree.
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I I actually have tech I like every day for school, even if it's like, the smallest little problem that happened, I will. I feel like, I text her a lot. I like spam her honestly, like, today she wouldn't answer, so I just kept going. It takes, it's kind of like my ranting way, if she can't answer. I'm like, okay, she can't answer, but I'll just spam 20 texts. It happens a lot. It happens at least once a day, but it's also kind of like my way of getting things out.
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She sometimes does the same for me. She also Wait, she does, yeah, you know, you know what I mean. She like, she talks to me too. So I'll like, it's the same thing, or even though it's harder, because I don't understand a lot of the things that she goes through, because she's an adult and I'm not, I still kind of try. I think I listen sometimes too. It's hard with my tics sometimes, because I'm listening, and then my tics are all like, Nope, you can't listen. But I definitely try.
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Yeah, no, that makes sense. Do you guys live in the same place? Or Amanda? Are you off in college or so?
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I'm off at college, but I'm only 20 minutes away. That's so I can come home whenever I really want. And Emily likes to come up here sometimes or down here. I'm actually south, but she likes to come join me in at college.
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Sometimes, good, oh, yeah.
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Now has your dynamic changed over the years between the two of you, like, grown closer times where you weren't as close? Like, like, Was it when Amanda first went to college? Was that a big change in kind of the dynamic or or do you guys just kind of make it work as you went through each of those?
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Honestly, I have I feel like I never say this a lot, but like, I feel like it was so much easier with our connection when she wasn't in college. I know that. I don't know if a lot of people think that, but it's very difficult, because when my least favorite part of the year, I feel like, is when we have to bring everything into her dorm. I'm always like, because I don't like cleaning or doing any of that, but it's also just because I'm like, Oh, I have to handle things by myself now, and I can't just run to my sister's room and rant about the most stupid things. So honestly, I think that has been very it's hard at times, but we get through it.
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Do you guys call a lot? Or is it mostly just like text messages?
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I feel like it's different, like I feel like we text every day. I can say that, but then I. I think we call a decent amount. I normally call her and tell her about my school day every day, especially like the first day school, or days that were bad. I kind of just call her to rant, yeah, yeah, you do.
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You know, I'm thinking about like, school being one of the most challenging places we are, like, when you have Tourette's, like, school can just be really challenging for people, and I feel like that's something where having a sibling could be really helpful, especially, I mean, not just if they had the same teachers as you and they know, but like, just someone to kind of confide in during those, like, difficult schooling years, or where you're just like, I don't know if you guys ever like Emily, if you ever kind of bottled your ticks in during the day and then month them out afterward or or regardless, just like school is tough as even whether or not you have ticks, and I think having like a sibling there that's really supportive and gets it just goes such a long way.
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Yeah, I agree.
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She actually Today I had a bad tick day at my at school, and I sent a whole giant paragraph to her, and she didn't really answer to that part. She kind of just ignored it. But it's okay.
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Sometimes it's nice to just, like, get it out.
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Like, just, it's therapeutic.
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You just, like, say it or write it down. It's the whole idea of, like, write a letter, but don't send it to like, someone when you're like, angry. You know, it's similar thing here, just like you kind of process by writing and stuff.
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But, yeah, she's like, my little diary. Oh, that's so sweet. That's nice.
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Amanda, what things do you look to Emily for?
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Like, how do you lean on her in what ways?
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I mean, I feel like I always have so much serious things happening, and I find that Emily can always be that comedy in my life, no matter what, she's always got a joke about something. And I can always call her or text her, and I will get a really, a silly, a really silly picture or a really embarrassing photo of myself, or the funniest text that makes absolutely no sense from her.
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She always puts the smile on my face. But some I, hmm, she, she has the funny things. She pulls them out of nowhere. We all need Pinterest, Pinterest,
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oh, Google funny things. When it just pops up and I just zoom up to my camera roll, and I send them to you. You google funny things.
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That's what you look up. It makes me laugh. Then I zoom to you,
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Amanda. Do you notice anything that about Emily and her Tourette's that other people might miss and that little bit of a vague question, but curious, if anything comes to mind there, just given how closely you know her and like the dynamic you guys have, I
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feel like she always puts on this strong front when she's talking to people, and she talks about, she's so proud of her threat, and she's like, she's worked really hard to like, get where she is. And she always talks about, like, the positives. But she she's not always like that. She She struggles like, school, especially these past couple days, I know it's been really difficult on her, and I bet that's how it is for most people, just in general. And I think she, she always puts on that strong front, and that's wonderful, because that makes her a great leader. But she does have her tricky days, and I think the way she gets through them and powers through them.
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Just it astounds me. It amazes me, really,
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yeah, Emily, any thoughts on that?
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Yeah, honestly, it's true. I, I, I don't like putting my problems on others, so especially when they don't fully understand, because then they're just going to be like, I don't understand. I don't know what to do, especially with like Tourette, I feel like I can't always talk to people because they they don't understand what I'm talking about. They're like, What do you mean? You You do something and you can't control it, you know, like they think it's just, I have horrible impulse problems. It is that kind of, but it isn't really that, and it's very difficult, like I have horrible days at school. Today was one of those days, and I just keep smiling at school. And it's honestly one of the hardest things that I feel like someone with trek can do is kind it's, it's really difficult to just push through when you kind of just want to lay in bed and cry. I I never say that. I always want to lay like today, I literally wanted to leave school so bad. I was like, I was having horrible ticks. I hit my head into the wall five times, and it hurt. My head hurts right now, but like, I I'm still going, because I know that tomorrow is probably going to be an amazing day. So like, I kind of gotta just, I've learned a lot, especially at Leadership Academy. I learned a lot about staying positive and all that.
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So I'm really, I'm trying.
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It. It's really a balance. No, you you said, What you said is so, so true and so valid. There's a balance, I think, between, yeah, Tourette's is a superpower. And I put on my, my, you know, smiling face, and I try to push through it, but inside it's, it can be really difficult. And doing that day in and day out, it's, it's grueling. It can be a lot and and especially this is, like, on top of all the other stress you have with, like, school work and everything else going on in life. And I think it just yeah, it just underscores the importance of having people in your life that you can be vulnerable with, that you can go to and talk to and you feel safe with, and like, yeah, they're cool with you sending them a giant book of a text message just to get through it, just to process it. You know, we all need that person. And so I love that you have that none of that undermines the strength that you have. It's we are all of these things. We are that you know that that pain that we feel inside, but also the fight through it, and the resilience that we build through that it's all of those things have either of you ever had to step in to explain or advocate in, like, a social situation, and maybe Amanda, this one might be a little more geared toward you, like did, I guess, not going to the same school as Emily. Maybe this would never happen. But curious, if you ever, like, advocated on her behalf or disclosed on her behalf, explain Tourette to someone, you know, that kind of thing.
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I mean, I, I'm going into the profession of education, so getting to learn about so right, and everything has been, I mean, super helpful to me. I think it's actually made me grow as like a teacher, in a sense, which is really awesome, and I'd like to talk about it, just like as a conversation sometimes with people, because I feel like I found it so intriguing learning about it, and now that I've gotten to experience it, I I just have such I don't know, like a passion to express and keep educating people that probably don't even know what it is. I mean, I wish I could advocate for Emily more, but she is, I think, one of, like, the best advocators out there, I don't think she needs me. I mean, like in the advocating sense, she's so good at it.
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She's so powerful and able to stand up for herself that, I mean, like when I once my friends meet her, like, or a new person that I'm with, I I I like to disclose that she has Tourette, because I find that, like, at least people my age are more like, chill with it, like they understand more. But Emily's just a great advocator, and I don't think I could do it better than her. So why try? I guess, wow.
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Well put Yeah, Emily, do you see yourself as a strong threat
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advocate? Yeah, I I don't want to be like, cocky or anything like be
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cocky. This is your moment.
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I think that, like, I've learned, especially because of NJ, CTS, I learned so much more about what Tourette is, because when I first had it, I was, like, really struggling.
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Like, what is going on with me?
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Like, why am I doing this? I've learned so much that I kind of, I feel like I'm I, like, just know everything about it, like, not everything, but a decent amount to be able to advocate for myself, and I've had a lot of experiences where someone tells me, You need to knock it off. It happened in school today. People are like, even people are like, Hey, why are you doing that? I have to be it's it's hard because I'm like, I have Tourette's, and sometimes people don't even know what that is, and I have to fully explain it, and I feel like one of the hardest things for me is not saying I'm sorry I have Tourette's because I know I've learned not Don't say sorry, because you can't control it.
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And I truly I get it. It's just one of the hardest things for me. I'm still, I'm still figuring that one out, and I think I'm getting better at it, and I probably will have to advocate for myself tomorrow, if me and my sister go to the movie theater, because we're gonna see Hamilton probably, and I always have to advocate for myself there, because there's if there's like a bald person, I will see them, and I will tell them they're bald, and I have to advocate for myself. And I've I like, have to prepare myself.
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Do you get Have you ever, like, been kicked out of a movie theater for vocal tics or not like
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that? Honestly, very happy. I haven't yet or ever, but I do. I have had people leave because of me. Um, I feel like I'd rather them leave than me and get kicked out and have to leave because of my
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day. Yeah, better than than you. Yeah, I know at least you got this movie, yeah.
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And it's like, we meet. My sister was there for that. There was this bald dude, and I literally kept looking.
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Over and saying, You're bald, and then I must say, it's the funniest tick ever. I say it to my teacher, who's bald, I walk in, I say, You're bald, and it's like, I think that's one of my best ticks, because I think it's funny. And I say it 500 times in the movie theater, and he just walks out, and I'm like, You know what you that's fine. I didn't have to walk out. So I
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was gonna ask, like, what's the funniest or weirdest tic related moment that you both have shared that makes you laugh? And I think that's probably it, unless you've got another one in mind to like, you know that that might do it. I think
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for me, at least, I love that one, because it's it's harmless and it's not rude, it's not offensive.
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People, if you're bald, you're bald, it's like, it's not offensive. And I'm fine with that. And I think I don't know, is there any other tick that's really funny? You can say, I don't care. I know. You don't always try to talk about my tics.
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I mean, people i You love to bark at people in like, the Great. That's, that's a fun one.
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I Yes, I do. I honestly think my favorite, yeah, that's one of my that one.
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I It happens in school. I got detention for once it was like, I got detention for barking at a kid and a kid and the parent was mad at me, and I'm like, you know, I don't know what to tell you.
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It's like, that's pretty harmless. Also, it's a tick, so like, you shouldn't get punished for it.
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Like a barking, like, that's not even, like, nothing, that's just a sound.
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I like the one that I called i in the store, I used to say, I used to scream that my sister's pregnant and she isn't. And it was really funny.
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It was thought about that.
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That was a fun and then I said her boyfriend's name is the Father. And it was so funny, like it was the funniest thing, because I screamed it, and everyone just stared. I'm surprised. No one said congratulations. I'm really surprised. Oh, great job, Amanda.
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I would ask how that was, what that was like for you, but I kind of can guess awkward. It's like, you know
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what it is?
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And, yeah, she was hiding.
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She was really hiding. Man, yeah, that was, that was a tricky one. That was one that I really didn't know what to do in that situation.
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Just, yeah, do I do? I do? I something. I celebrate. I said, Oh yeah, thank you. Yes, she we're very I just don't do.
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I deny it. Do I out Correct?
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What do I do?
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Yeah, happens a lot in the store. I feel like I do that a decent amount when you're with me at the store, yeah, yeah. There's definitely
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other people or situations bring out those ticks. Like, that's super common. So it makes sense that there's some ticks that like you do when you guys are in public together, yeah? Any challenges around, like, co occurring conditions, or Emily has, like, the tics been kind of the main dominant thing in your life.
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So I, I have a lot of other, like, not issues.
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I'd say, I would say my, like, yes, my tics are my, one of my number one things, because it's daily and it's very difficult.
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But I do feel like my like my ADHD, that gets very difficult.
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My sister manda has seen my ADHD get insane. I sometimes can't sit down. I'm just so energetic, and it doesn't happen insane amount, but it happens enough.
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And of course, that's a big struggle, because that's a part of Tourette's. It can make your sometimes, my Tourette's gets worse because of it. I like, I that's another that's just one of my bigger things, and definitely, like, anxiety and all that that is so difficult for me. Like, I have a like, I have a thing, like, I cannot be stressed. If I'm stressed, I'm not going to be able to survive the day. Like, I know stress happens all the time, but I can't have an extreme amount. I kind of got it. I've learned to separate myself from, like, drama and all that in school, especially because I, I won't be able to handle it, because it's gonna, it's gonna mess me up.
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It's great that, you know you're like, I don't want to call it limits, but like, you know the most you can take and then that you're able to be like, No, I'm not signing up for more. Like, I'm not doing not getting myself in that situation. I think that takes a certain level of, like, maturity and awareness. Amanda, I'm curious to hear about, like, when the moments that Emily was describing where her ADHD is really bad and or just, like, flaring a lot, and it's like, it sounds like it's the hyperactivity, like, can't even sit down, can't, like, just stay in one place and kind of relax.
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Is there anything you know? Not that the. Is your problem to fix? But like, is there anything you have found that you can do that kind of helps in that situation?
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I mean, I think finding something for that she enjoys to like focus on helps, so trying to like recenter her focus sometimes helps, even if that's just like turning on like a TV show or encouraging her to be like, Hey, do you think now's a good time to like, maybe draw a little bit? And then sometimes that works. I find that that will help Emily is to like recenter the focus, or put your focus on something else that like, will take your mind off the stress.
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In a sense, I think that works a lot, at least that's what I
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found. I mean, I as well. I personally found that to help me, just like, you're not gonna fix it by having me just like, I don't know, try to focus on my thoughts or like, try to sometimes breathing exercises can help sometimes in the right setting, but normally, the best thing for me would be some kind of distraction, like, I need some kind of stimuli to just take my brain somewhere else and get it on a different, you know, different path for a while, but that makes a lot of sense. Yeah, I'm always curious to think Emily, like, do you see your Tourette's as kind of a part of your identity? Is it separate?
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Is it is it a piece of yourself and how you define yourself?
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Kind of, what's your relationship with your Tourette's?
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Like this, I always say that Tourette's is my best friend. I know a lot of my literal best friend. She literally has Tourette's, and I truly understand that she's, she doesn't want her Tourette's.
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It's so it's, it's bad at times, and I get that some people don't like their Tourette because it's hard on them, and it's different for everyone, but especially for me, I really think threats is my best friend that's not human, and I think that it's like something that never goes away, like a best friend, they're there with you through ups and downs, and sometimes they fade at times, but they don't really go away.
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Oh, that's what I kind of thinking about it.
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I've never thought in that kind of metaphor that's so beautiful.
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I love that.
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Yeah, I really, I really, personally think, of course, sometimes I absolutely hate threat, like at days I'm just like, you're making me mad, but at the same time, I'm I adore it. It's made me Of course, I I had to grow up and mature a lot quicker than a normal teenager or child would have to. But I have definitely, I think threat has made me mature so much and know so much more about who I am, that I've become more okay with myself, even though some days I'm gonna struggle.
00:27:53.138 --> 00:28:17.578
Yeah, I think it's yeah. It's all of that like and there's no no law saying you can't struggle while also being empowered by it and seeing it as a big part of who you are actually. On that note, do you, do you think of any, can you think of any strengths or sort of superpowers, or anything around that that comes from your Tourette's or has it given you a different perspective on your life in any other ways? I think you've hit on some of them.
00:28:15.719 --> 00:28:17.578
Marc, I
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think that it.
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Trey has really taught me of who my friend, my true friends are.
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It, it's very difficult at times when you lose a friend because of your Tourette or even a family member doesn't, isn't, is like, not nice to you because of it, and they will never understand and they just are nasty and don't want to talk to you because of it. There's so many situations that I'm thankful that I know now because, like some of those friends, they were so fake. They didn't, they didn't stay with me through my hard times. And if they can't stay with me through anything like especially with Trey, that's who I am, and they have to accept that. And I've, of course, I don't have a pile of friends, like some kids in school, even they have like, over 20 friends, which is honestly insane to me, because I, like, I feel like I have like, maybe three or four friends. And those people, they actually understand me, and they support me. They ignore my tics.
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They laugh when I laugh, they it's like, it's kind of equal, and at sometimes it's going to be hard for them, because some days I'm not the best, like today, I threw a pencil at my friend at school, and he just looked at me and just threw back it. It's like, that's okay, because I'm fine with that. I needed the pencil anyways, and it's like, I'm not mad at that.
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It's like, I've learned so much about what a true friend is. And even for family, I have one family member who leaves me a lot because of my tics and. And I love them, but at the same time, I'm like, You need to support me and my family. But if they can't support me, they can kind of shoe, I guess it I've learned, I've learned a lot.
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It's really helped me with that, especially that,
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yeah, that's really powerful. And nothing wrong with having a small group of really core friends, like close friends, that, you know, well, I think we have this idea that, like, Oh, you have to have the more friends the better. And like, really, it's about, like, the quality of the friendship.
00:30:30.859 --> 00:30:49.420
And if you get that with, you know, 123, people, that's wonderful. And also, yeah, I can't imagine having like, 20 friends and trying to be the good friend to every single one of them. That would be exhausting. But Amanda, we haven't, haven't turned to you with any kind of questions or anything lately, any any reflections on this stuff.
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I mean, I the, like, the past couple years of, like, ever since Emily, like, officially, like, I mean, like, when she found out she had a tick disorder, and then, like, into this, like, actually being finally diagnosed. I honestly it's been like the like growth, the such a distinct like growth period that I've watched happen.
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I kind of like to describe it as, like, Emily was on like a solid incline, and then she, like, found something out about her. And instead of like, she kind of like, stopped on that hill, and instead of like going like, down, she like, stopped and paused and let it just, like, stay neutral for a bit, and then let it grow and found out. Like, it really, like, took a second, like, she took the time to learn about it. Like she I don't think she ever had that moment where, like, I think right from the second that she found out that, like, ticks were a thing and that she probably has them, she was she was researching, she was asking doctors, she, at like, 11 years old, was talking to doctors and asking questions. And I you don't find that much like you let the you, let your mom talk, yeah, but she always like, she, instead of like, declining on a hill, she definitely like, I don't know how she did it. It was wonderful, but she stayed on that hill until she was felt comfortable enough to keep going up it.
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Wow. Yeah, that's amazing. Emily, do you? Do you see it that way as well.
00:32:20.960 --> 00:32:23.720
I haven't thought of it that way, I guess.
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But now that I'm thinking about it, yeah, it's I didn't really go back down, you know, I feel like I did stay in the same spot. It's I feel like when I started having ticks, or when I noticed I had tics. It was, it was hard, but I was like, I need to, I need to learn this. I've I did research. I especially with that girl, Baylin, she had all of the tics that I had, even though I gained some just by watching it. And that confused me a lot. But I really like she was another big help for me. I know so many like influencers, like with Tourette, or even just anything like, just some like article about it. That's a that I read them at, like, 11 years old. Because I was like, I saw that, if it's Tourette, it doesn't really go away. And I was like, I need to learn about it if it doesn't go away. So and, yeah, it hasn't gone away.
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But I because I learned so much about it at such a young age, I feel like now I'm just like, I'm getting better, I'm getting more positive. I'm getting i i feel like I'm, like, literally becoming a young adult, because I don't really get upset by it anymore, like I understand it.
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Of course, I'm gonna learn more every day, but it's it's just a part of my life now.
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It really is a journey, and I can tell just, I mean, listening to you, you have a lot of self awareness and maturity. That's like wise for your years, and that journey will continue. I think you've done such an impressive job setting yourself up for for you know where that journey takes you. So really, I applaud that any Does anything come to mind in terms of tips that you would tell someone who's recently diagnosed with TS or a co occurring condition? Of course, everyone's different. But are there any big things you've learned that you would you would tell someone who read as they're diagnosed,
00:34:27.019 --> 00:34:59.619
my tip is, well, it's not really a tip, but I'd say that it's okay to not be okay, because on some days, you're not gonna want to even get up, you're gonna be you're gonna be sore some days because of your tics. You're gonna be just upset about it. And then some days, you'll wake up and you'll be so motivated, and you'll be just fine with your tics. It's it never It's a never ending cycle. It's up and down.
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It's. It's, it's insane, and it's, it's gonna be okay though, like it's, you're gonna be able to survive. You're gonna you're gonna be able to do whatever anyone without track can do.
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It's not stopping you from chasing your dreams or anything.
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It's, you can still do it. You just have to, it might take a little slower. You never know.
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It's even if it takes a little slower amount, you can still get there. You just got to push a little harder than anyone else, and it makes you stronger. So I really think that it's gonna, it's gonna make you stronger, and that's a good thing. You're gonna be stronger than anyone who the people who don't have Tourette, they aren't as strong as us. We have to handle something every day. Sorry, Amanda, you're not as strong as us.
00:35:51.760 --> 00:35:53.079
But it's
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true, the resilience that you get. And yeah, I'm always amazed myself at, like, when I'm having a good day, how, like, almost trivial and like, silly, that the problems of my bad day seem like my confidence and everything, like we have our ups and downs.
00:36:07.500 --> 00:36:29.780
It is like a roller coaster, like you said, and all when you're when you're up, like when things are feeling great, I don't really feel like I think back on the bad days, and it's like, oh, I got through it. It was nothing and and that happened that it kind of always happens, like whenever I'm having a bad day, it's always gonna be followed at some point in time, maybe not the next day, maybe it'll be a week later.
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Some point you're gonna have a good day again. And we're always moving forward, you know. So I think putting it in that perspective is super important.
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And like you said, it's okay to be not okay. Love that. Well, Emily and Amanda, thank you both so much for being on the uptick.
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So glad to have you on and to our listeners. Hope to hope to hear from everyone again soon.
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Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life you.
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So, yeah, it hasn't gone away, but because I learned so much about it at such a young age, I feel like now I'm just like, I'm getting better.
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I'm getting more positive. I feel like I'm literally becoming a young adult, because I don't really get upset by it anymore.
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I understand it. Of course, I'm gonna learn more every day, but it's it's just a part of my life now.
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Welcome to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community.
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Welcome back to the uptick. I am thrilled to be here. It's been a couple of months since our last episode. Unfortunately, the state funding for NJ CTS is still up in the air, and we all continue crossing our fingers that the organization gets its funding resumed. However, in the meantime, I've gotten the go ahead to make two new episodes of the uptick. So at least for now, the uptick is back, and this is the first of the two episodes we'll be recording today. I'm speaking with two incredible teenagers from New Jersey, barely teenager. One will be 20 in a couple of days, but Emily and Amanda Muldowney, I met Emily at the Tim Howard Leadership Academy this past August. Emily has Tourette and her sister, Amanda does not.
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However, we still like Amanda.
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How are both of you
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today? I'm doing great. I'm doing good. You know, maybe a good
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place to start would be like, Well, I'll say what's interesting about this episode is we've got two people, one with Tourette's, one without both sisters. And I figured the big theme of this episode will be around sisterhood and how you support each other and just kind of Tourette in the family.
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That's sort of an evergreen topic that's always great to hear more about, because, as we know, Tourette is, yes, it's genetic, and many people have siblings with it. We also have siblings who don't have it, and how it shows up and manifests itself in the family, and navigating that dynamic is something I think all of us can use just more tips and advice and ideas around. So maybe a good place to start would be for Emily, if you want to share a little bit about how your diagnosis came about, and that moment where Tourette's first became part of the family life.
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So I'm the first person, of course, in the family to have it as we know of.
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But I started having tics when I was like 11 or 12, I think. And Well, bad tics at that time. And then I finally got diagnosed this year, actually. And it took a very long time because, like, neurologists were being like, they, like, kept sending me off to other people. And, yeah, but like, I've we've learned that kind of when I was younger.
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We've seen videos that I actually did have tics, but they weren't as bad as when I was like, well as like now, I guess so. Yeah, I'm very happy I have a final diagnosis.
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When, before you had the diagnosis, did you guys, like, within the family, like, make jokes about it, like, before I was diagnosed, and even kind of after, like we did, my tics were kind of like a joke with my siblings in a good, like, loving way. But curious, if you guys had that dynamic,
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go ahead, em, did we? I mean, I don't really think so. I think it was a very new thing for us, because we've never really, you sort of hear about it movies and, like, social media, sort of, but you don't really get informed on it.
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So we didn't really know much about it. So, like, I guess it was sort of like a hesitation as to, like, what was okay and what would be offensive, in a sense.
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And so we, I think we sort of refrained from joking about it because of that?
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Yeah, yeah. You know, humor can be a cope for a lot of people, kind of a way to cope with it, but it's also a delicate thing, and, like, there's sensitivities there to, you know, be navigated, for sure. So maybe we just dive right into it. I would love to hear a little bit about, like, how you've maintained your bond as sisters with Tourette and life and everything that has gone on. What are your thoughts on that?
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Oh, me, okay, that was my cue. But we've had a, I think we've had a pretty tricky childhood, or both of us have, and that really bonded us as sisters, because it became that like we were one of the like we we would always be together, and we would find that comfort in being with each other and having that shared experience. And obviously I can't share an experience with her having Tourette, but I think us having that like emotional bond at our for our childhood has really helped us. Yeah, I What are you thinking?
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I agree. I feel like, Yeah, I agree, like, with our childhood, not like, having a lot of difficulties. I would say, Yeah, we always were together, like, on like, rough days I went to your room. On your rough days, you went to my room, it was kind of like we were each other's therapists, that kind of, so, yeah, I really think that's kind of kept us together, because even I feel like when I got Tourette's, or when I even when I didn't have the diagnosis, it was like a little bump on the road, but we could, but we could stay together, even though, because we've been through so much worse,
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and you guys are pretty close in age, right?
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We're five years. Oh, so not that close, but I guess, close enough where, yeah, similar kind of phases of life, you know, at the same time, how do you support each other? How do you do you help each other? Like Amanda say, Emily's having a lot of ticks and, you know, or CO occurring conditions, it's really flaring that day. What kinds of things might you do?
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I mean, I always tell Emily that my like, my text messages are always open, like, I will always answer if she calls. Obviously, if I'm in class, I can't really do much of anything, but those classes are only two hours. So I'm always available. I try my best to, like, answer the phone. I always try my best to answer her text. I promise I'm not a bad student, but I do answer texts in class, especially Emily's, but I always try my hardest to just be there for her. And I think, I think that's just my personal way. I I think I'm a good listener, right? Yeah, you you, yeah, you are. But I just listen. And I think that really helps. I think I think I see it helps Emily. I think talking about things and not keeping things bottled up is, like, super helpful in just in general. So being able to have that, like, always being able to go to them and not have like, be judged is like, you don't really find much of that in, like, the world. You can't really find many people that won't judge you. But I know Emily won't. She might make fun of me, but she won't judge me.
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Yeah, I agree.
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I I actually have tech I like every day for school, even if it's like, the smallest little problem that happened, I will. I feel like, I text her a lot. I like spam her honestly, like, today she wouldn't answer, so I just kept going. It takes, it's kind of like my ranting way, if she can't answer. I'm like, okay, she can't answer, but I'll just spam 20 texts. It happens a lot. It happens at least once a day, but it's also kind of like my way of getting things out.
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She sometimes does the same for me. She also Wait, she does, yeah, you know, you know what I mean. She like, she talks to me too. So I'll like, it's the same thing, or even though it's harder, because I don't understand a lot of the things that she goes through, because she's an adult and I'm not, I still kind of try. I think I listen sometimes too. It's hard with my tics sometimes, because I'm listening, and then my tics are all like, Nope, you can't listen. But I definitely try.
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Yeah, no, that makes sense. Do you guys live in the same place? Or Amanda? Are you off in college or so?
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I'm off at college, but I'm only 20 minutes away. That's so I can come home whenever I really want. And Emily likes to come up here sometimes or down here. I'm actually south, but she likes to come join me in at college.
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Sometimes, good, oh, yeah.
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Now has your dynamic changed over the years between the two of you, like, grown closer times where you weren't as close? Like, like, Was it when Amanda first went to college? Was that a big change in kind of the dynamic or or do you guys just kind of make it work as you went through each of those?
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Honestly, I have I feel like I never say this a lot, but like, I feel like it was so much easier with our connection when she wasn't in college. I know that. I don't know if a lot of people think that, but it's very difficult, because when my least favorite part of the year, I feel like, is when we have to bring everything into her dorm. I'm always like, because I don't like cleaning or doing any of that, but it's also just because I'm like, Oh, I have to handle things by myself now, and I can't just run to my sister's room and rant about the most stupid things. So honestly, I think that has been very it's hard at times, but we get through it.
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Do you guys call a lot? Or is it mostly just like text messages?
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I feel like it's different, like I feel like we text every day. I can say that, but then I. I think we call a decent amount. I normally call her and tell her about my school day every day, especially like the first day school, or days that were bad. I kind of just call her to rant, yeah, yeah, you do.
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You know, I'm thinking about like, school being one of the most challenging places we are, like, when you have Tourette's, like, school can just be really challenging for people, and I feel like that's something where having a sibling could be really helpful, especially, I mean, not just if they had the same teachers as you and they know, but like, just someone to kind of confide in during those, like, difficult schooling years, or where you're just like, I don't know if you guys ever like Emily, if you ever kind of bottled your ticks in during the day and then month them out afterward or or regardless, just like school is tough as even whether or not you have ticks, and I think having like a sibling there that's really supportive and gets it just goes such a long way.
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Yeah, I agree.
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She actually Today I had a bad tick day at my at school, and I sent a whole giant paragraph to her, and she didn't really answer to that part. She kind of just ignored it. But it's okay.
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Sometimes it's nice to just, like, get it out.
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Like, just, it's therapeutic.
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You just, like, say it or write it down. It's the whole idea of, like, write a letter, but don't send it to like, someone when you're like, angry. You know, it's similar thing here, just like you kind of process by writing and stuff.
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But, yeah, she's like, my little diary. Oh, that's so sweet. That's nice.
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Amanda, what things do you look to Emily for?
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Like, how do you lean on her in what ways?
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I mean, I feel like I always have so much serious things happening, and I find that Emily can always be that comedy in my life, no matter what, she's always got a joke about something. And I can always call her or text her, and I will get a really, a silly, a really silly picture or a really embarrassing photo of myself, or the funniest text that makes absolutely no sense from her.
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She always puts the smile on my face. But some I, hmm, she, she has the funny things. She pulls them out of nowhere. We all need Pinterest, Pinterest,
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oh, Google funny things. When it just pops up and I just zoom up to my camera roll, and I send them to you. You google funny things.
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That's what you look up. It makes me laugh. Then I zoom to you,
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Amanda. Do you notice anything that about Emily and her Tourette's that other people might miss and that little bit of a vague question, but curious, if anything comes to mind there, just given how closely you know her and like the dynamic you guys have, I
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feel like she always puts on this strong front when she's talking to people, and she talks about, she's so proud of her threat, and she's like, she's worked really hard to like, get where she is. And she always talks about, like, the positives. But she she's not always like that. She She struggles like, school, especially these past couple days, I know it's been really difficult on her, and I bet that's how it is for most people, just in general. And I think she, she always puts on that strong front, and that's wonderful, because that makes her a great leader. But she does have her tricky days, and I think the way she gets through them and powers through them.
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Just it astounds me. It amazes me, really,
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yeah, Emily, any thoughts on that?
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Yeah, honestly, it's true. I, I, I don't like putting my problems on others, so especially when they don't fully understand, because then they're just going to be like, I don't understand. I don't know what to do, especially with like Tourette, I feel like I can't always talk to people because they they don't understand what I'm talking about. They're like, What do you mean? You You do something and you can't control it, you know, like they think it's just, I have horrible impulse problems. It is that kind of, but it isn't really that, and it's very difficult, like I have horrible days at school. Today was one of those days, and I just keep smiling at school. And it's honestly one of the hardest things that I feel like someone with trek can do is kind it's, it's really difficult to just push through when you kind of just want to lay in bed and cry. I I never say that. I always want to lay like today, I literally wanted to leave school so bad. I was like, I was having horrible ticks. I hit my head into the wall five times, and it hurt. My head hurts right now, but like, I I'm still going, because I know that tomorrow is probably going to be an amazing day. So like, I kind of gotta just, I've learned a lot, especially at Leadership Academy. I learned a lot about staying positive and all that.
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So I'm really, I'm trying.
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It. It's really a balance. No, you you said, What you said is so, so true and so valid. There's a balance, I think, between, yeah, Tourette's is a superpower. And I put on my, my, you know, smiling face, and I try to push through it, but inside it's, it can be really difficult. And doing that day in and day out, it's, it's grueling. It can be a lot and and especially this is, like, on top of all the other stress you have with, like, school work and everything else going on in life. And I think it just yeah, it just underscores the importance of having people in your life that you can be vulnerable with, that you can go to and talk to and you feel safe with, and like, yeah, they're cool with you sending them a giant book of a text message just to get through it, just to process it. You know, we all need that person. And so I love that you have that none of that undermines the strength that you have. It's we are all of these things. We are that you know that that pain that we feel inside, but also the fight through it, and the resilience that we build through that it's all of those things have either of you ever had to step in to explain or advocate in, like, a social situation, and maybe Amanda, this one might be a little more geared toward you, like did, I guess, not going to the same school as Emily. Maybe this would never happen. But curious, if you ever, like, advocated on her behalf or disclosed on her behalf, explain Tourette to someone, you know, that kind of thing.
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I mean, I, I'm going into the profession of education, so getting to learn about so right, and everything has been, I mean, super helpful to me. I think it's actually made me grow as like a teacher, in a sense, which is really awesome, and I'd like to talk about it, just like as a conversation sometimes with people, because I feel like I found it so intriguing learning about it, and now that I've gotten to experience it, I I just have such I don't know, like a passion to express and keep educating people that probably don't even know what it is. I mean, I wish I could advocate for Emily more, but she is, I think, one of, like, the best advocators out there, I don't think she needs me. I mean, like in the advocating sense, she's so good at it.
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She's so powerful and able to stand up for herself that, I mean, like when I once my friends meet her, like, or a new person that I'm with, I I I like to disclose that she has Tourette, because I find that, like, at least people my age are more like, chill with it, like they understand more. But Emily's just a great advocator, and I don't think I could do it better than her. So why try? I guess, wow.
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Well put Yeah, Emily, do you see yourself as a strong threat
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advocate? Yeah, I I don't want to be like, cocky or anything like be
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cocky. This is your moment.
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I think that, like, I've learned, especially because of NJ, CTS, I learned so much more about what Tourette is, because when I first had it, I was, like, really struggling.
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Like, what is going on with me?
00:18:04.679 --> 00:18:53.259
Like, why am I doing this? I've learned so much that I kind of, I feel like I'm I, like, just know everything about it, like, not everything, but a decent amount to be able to advocate for myself, and I've had a lot of experiences where someone tells me, You need to knock it off. It happened in school today. People are like, even people are like, Hey, why are you doing that? I have to be it's it's hard because I'm like, I have Tourette's, and sometimes people don't even know what that is, and I have to fully explain it, and I feel like one of the hardest things for me is not saying I'm sorry I have Tourette's because I know I've learned not Don't say sorry, because you can't control it.
00:18:53.679 --> 00:19:27.499
And I truly I get it. It's just one of the hardest things for me. I'm still, I'm still figuring that one out, and I think I'm getting better at it, and I probably will have to advocate for myself tomorrow, if me and my sister go to the movie theater, because we're gonna see Hamilton probably, and I always have to advocate for myself there, because there's if there's like a bald person, I will see them, and I will tell them they're bald, and I have to advocate for myself. And I've I like, have to prepare myself.
00:19:29.059 --> 00:19:33.799
Do you get Have you ever, like, been kicked out of a movie theater for vocal tics or not like
00:19:33.799 --> 00:19:50.019
that? Honestly, very happy. I haven't yet or ever, but I do. I have had people leave because of me. Um, I feel like I'd rather them leave than me and get kicked out and have to leave because of my
00:19:50.019 --> 00:19:54.460
day. Yeah, better than than you. Yeah, I know at least you got this movie, yeah.
00:19:54.460 --> 00:19:59.920
And it's like, we meet. My sister was there for that. There was this bald dude, and I literally kept looking.
00:20:00.000 --> 00:20:25.460
Over and saying, You're bald, and then I must say, it's the funniest tick ever. I say it to my teacher, who's bald, I walk in, I say, You're bald, and it's like, I think that's one of my best ticks, because I think it's funny. And I say it 500 times in the movie theater, and he just walks out, and I'm like, You know what you that's fine. I didn't have to walk out. So I
00:20:25.460 --> 00:20:39.079
was gonna ask, like, what's the funniest or weirdest tic related moment that you both have shared that makes you laugh? And I think that's probably it, unless you've got another one in mind to like, you know that that might do it. I think
00:20:39.140 --> 00:20:44.740
for me, at least, I love that one, because it's it's harmless and it's not rude, it's not offensive.
00:20:44.740 --> 00:21:01.440
People, if you're bald, you're bald, it's like, it's not offensive. And I'm fine with that. And I think I don't know, is there any other tick that's really funny? You can say, I don't care. I know. You don't always try to talk about my tics.
00:21:01.680 --> 00:21:10.559
I mean, people i You love to bark at people in like, the Great. That's, that's a fun one.
00:21:11.099 --> 00:21:18.539
I Yes, I do. I honestly think my favorite, yeah, that's one of my that one.
00:21:14.400 --> 00:21:29.599
I It happens in school. I got detention for once it was like, I got detention for barking at a kid and a kid and the parent was mad at me, and I'm like, you know, I don't know what to tell you.
00:21:29.720 --> 00:21:34.640
It's like, that's pretty harmless. Also, it's a tick, so like, you shouldn't get punished for it.
00:21:34.640 --> 00:21:38.960
Like a barking, like, that's not even, like, nothing, that's just a sound.
00:21:39.259 --> 00:21:50.200
I like the one that I called i in the store, I used to say, I used to scream that my sister's pregnant and she isn't. And it was really funny.
00:21:51.519 --> 00:21:53.319
It was thought about that.
00:21:53.920 --> 00:22:13.920
That was a fun and then I said her boyfriend's name is the Father. And it was so funny, like it was the funniest thing, because I screamed it, and everyone just stared. I'm surprised. No one said congratulations. I'm really surprised. Oh, great job, Amanda.
00:22:15.000 --> 00:22:21.079
I would ask how that was, what that was like for you, but I kind of can guess awkward. It's like, you know
00:22:21.079 --> 00:22:23.720
what it is?
00:22:21.079 --> 00:22:23.720
And, yeah, she was hiding.
00:22:23.720 --> 00:22:32.359
She was really hiding. Man, yeah, that was, that was a tricky one. That was one that I really didn't know what to do in that situation.
00:22:32.900 --> 00:22:39.140
Just, yeah, do I do? I do? I something. I celebrate. I said, Oh yeah, thank you. Yes, she we're very I just don't do.
00:22:39.380 --> 00:22:41.859
I deny it. Do I out Correct?
00:22:39.380 --> 00:22:41.859
What do I do?
00:22:41.980 --> 00:22:49.900
Yeah, happens a lot in the store. I feel like I do that a decent amount when you're with me at the store, yeah, yeah. There's definitely
00:22:50.799 --> 00:23:06.960
other people or situations bring out those ticks. Like, that's super common. So it makes sense that there's some ticks that like you do when you guys are in public together, yeah? Any challenges around, like, co occurring conditions, or Emily has, like, the tics been kind of the main dominant thing in your life.
00:23:07.200 --> 00:23:13.500
So I, I have a lot of other, like, not issues.
00:23:13.500 --> 00:23:24.619
I'd say, I would say my, like, yes, my tics are my, one of my number one things, because it's daily and it's very difficult.
00:23:25.039 --> 00:23:32.059
But I do feel like my like my ADHD, that gets very difficult.
00:23:32.119 --> 00:23:46.420
My sister manda has seen my ADHD get insane. I sometimes can't sit down. I'm just so energetic, and it doesn't happen insane amount, but it happens enough.
00:23:42.640 --> 00:24:29.779
And of course, that's a big struggle, because that's a part of Tourette's. It can make your sometimes, my Tourette's gets worse because of it. I like, I that's another that's just one of my bigger things, and definitely, like, anxiety and all that that is so difficult for me. Like, I have a like, I have a thing, like, I cannot be stressed. If I'm stressed, I'm not going to be able to survive the day. Like, I know stress happens all the time, but I can't have an extreme amount. I kind of got it. I've learned to separate myself from, like, drama and all that in school, especially because I, I won't be able to handle it, because it's gonna, it's gonna mess me up.
00:24:30.319 --> 00:24:57.880
It's great that, you know you're like, I don't want to call it limits, but like, you know the most you can take and then that you're able to be like, No, I'm not signing up for more. Like, I'm not doing not getting myself in that situation. I think that takes a certain level of, like, maturity and awareness. Amanda, I'm curious to hear about, like, when the moments that Emily was describing where her ADHD is really bad and or just, like, flaring a lot, and it's like, it sounds like it's the hyperactivity, like, can't even sit down, can't, like, just stay in one place and kind of relax.
00:24:58.420 --> 00:25:06.299
Is there anything you know? Not that the. Is your problem to fix? But like, is there anything you have found that you can do that kind of helps in that situation?
00:25:06.779 --> 00:25:36.500
I mean, I think finding something for that she enjoys to like focus on helps, so trying to like recenter her focus sometimes helps, even if that's just like turning on like a TV show or encouraging her to be like, Hey, do you think now's a good time to like, maybe draw a little bit? And then sometimes that works. I find that that will help Emily is to like recenter the focus, or put your focus on something else that like, will take your mind off the stress.
00:25:36.500 --> 00:25:40.839
In a sense, I think that works a lot, at least that's what I
00:25:40.839 --> 00:26:14.880
found. I mean, I as well. I personally found that to help me, just like, you're not gonna fix it by having me just like, I don't know, try to focus on my thoughts or like, try to sometimes breathing exercises can help sometimes in the right setting, but normally, the best thing for me would be some kind of distraction, like, I need some kind of stimuli to just take my brain somewhere else and get it on a different, you know, different path for a while, but that makes a lot of sense. Yeah, I'm always curious to think Emily, like, do you see your Tourette's as kind of a part of your identity? Is it separate?
00:26:10.500 --> 00:26:16.920
Is it is it a piece of yourself and how you define yourself?
00:26:14.880 --> 00:26:18.180
Kind of, what's your relationship with your Tourette's?
00:26:18.359 --> 00:26:36.440
Like this, I always say that Tourette's is my best friend. I know a lot of my literal best friend. She literally has Tourette's, and I truly understand that she's, she doesn't want her Tourette's.
00:26:33.500 --> 00:27:02.220
It's so it's, it's bad at times, and I get that some people don't like their Tourette because it's hard on them, and it's different for everyone, but especially for me, I really think threats is my best friend that's not human, and I think that it's like something that never goes away, like a best friend, they're there with you through ups and downs, and sometimes they fade at times, but they don't really go away.
00:27:02.819 --> 00:27:05.700
Oh, that's what I kind of thinking about it.
00:27:05.700 --> 00:27:09.000
I've never thought in that kind of metaphor that's so beautiful.
00:27:09.000 --> 00:27:09.599
I love that.
00:27:10.079 --> 00:27:52.480
Yeah, I really, I really, personally think, of course, sometimes I absolutely hate threat, like at days I'm just like, you're making me mad, but at the same time, I'm I adore it. It's made me Of course, I I had to grow up and mature a lot quicker than a normal teenager or child would have to. But I have definitely, I think threat has made me mature so much and know so much more about who I am, that I've become more okay with myself, even though some days I'm gonna struggle.
00:27:53.138 --> 00:28:17.578
Yeah, I think it's yeah. It's all of that like and there's no no law saying you can't struggle while also being empowered by it and seeing it as a big part of who you are actually. On that note, do you, do you think of any, can you think of any strengths or sort of superpowers, or anything around that that comes from your Tourette's or has it given you a different perspective on your life in any other ways? I think you've hit on some of them.
00:28:15.719 --> 00:28:17.578
Marc, I
00:28:17.579 --> 00:28:20.599
think that it.
00:28:17.579 --> 00:28:25.460
Trey has really taught me of who my friend, my true friends are.
00:28:20.599 --> 00:29:23.539
It, it's very difficult at times when you lose a friend because of your Tourette or even a family member doesn't, isn't, is like, not nice to you because of it, and they will never understand and they just are nasty and don't want to talk to you because of it. There's so many situations that I'm thankful that I know now because, like some of those friends, they were so fake. They didn't, they didn't stay with me through my hard times. And if they can't stay with me through anything like especially with Trey, that's who I am, and they have to accept that. And I've, of course, I don't have a pile of friends, like some kids in school, even they have like, over 20 friends, which is honestly insane to me, because I, like, I feel like I have like, maybe three or four friends. And those people, they actually understand me, and they support me. They ignore my tics.
00:29:23.720 --> 00:29:49.000
They laugh when I laugh, they it's like, it's kind of equal, and at sometimes it's going to be hard for them, because some days I'm not the best, like today, I threw a pencil at my friend at school, and he just looked at me and just threw back it. It's like, that's okay, because I'm fine with that. I needed the pencil anyways, and it's like, I'm not mad at that.
00:29:49.299 --> 00:30:14.759
It's like, I've learned so much about what a true friend is. And even for family, I have one family member who leaves me a lot because of my tics and. And I love them, but at the same time, I'm like, You need to support me and my family. But if they can't support me, they can kind of shoe, I guess it I've learned, I've learned a lot.
00:30:11.400 --> 00:30:15.839
It's really helped me with that, especially that,
00:30:16.079 --> 00:30:30.680
yeah, that's really powerful. And nothing wrong with having a small group of really core friends, like close friends, that, you know, well, I think we have this idea that, like, Oh, you have to have the more friends the better. And like, really, it's about, like, the quality of the friendship.
00:30:30.859 --> 00:30:49.420
And if you get that with, you know, 123, people, that's wonderful. And also, yeah, I can't imagine having like, 20 friends and trying to be the good friend to every single one of them. That would be exhausting. But Amanda, we haven't, haven't turned to you with any kind of questions or anything lately, any any reflections on this stuff.
00:30:49.480 --> 00:31:13.440
I mean, I the, like, the past couple years of, like, ever since Emily, like, officially, like, I mean, like, when she found out she had a tick disorder, and then, like, into this, like, actually being finally diagnosed. I honestly it's been like the like growth, the such a distinct like growth period that I've watched happen.
00:31:09.000 --> 00:32:14.759
I kind of like to describe it as, like, Emily was on like a solid incline, and then she, like, found something out about her. And instead of like, she kind of like, stopped on that hill, and instead of like going like, down, she like, stopped and paused and let it just, like, stay neutral for a bit, and then let it grow and found out. Like, it really, like, took a second, like, she took the time to learn about it. Like she I don't think she ever had that moment where, like, I think right from the second that she found out that, like, ticks were a thing and that she probably has them, she was she was researching, she was asking doctors, she, at like, 11 years old, was talking to doctors and asking questions. And I you don't find that much like you let the you, let your mom talk, yeah, but she always like, she, instead of like, declining on a hill, she definitely like, I don't know how she did it. It was wonderful, but she stayed on that hill until she was felt comfortable enough to keep going up it.
00:32:15.000 --> 00:32:20.779
Wow. Yeah, that's amazing. Emily, do you? Do you see it that way as well.
00:32:20.960 --> 00:32:23.720
I haven't thought of it that way, I guess.
00:32:23.960 --> 00:33:31.400
But now that I'm thinking about it, yeah, it's I didn't really go back down, you know, I feel like I did stay in the same spot. It's I feel like when I started having ticks, or when I noticed I had tics. It was, it was hard, but I was like, I need to, I need to learn this. I've I did research. I especially with that girl, Baylin, she had all of the tics that I had, even though I gained some just by watching it. And that confused me a lot. But I really like she was another big help for me. I know so many like influencers, like with Tourette, or even just anything like, just some like article about it. That's a that I read them at, like, 11 years old. Because I was like, I saw that, if it's Tourette, it doesn't really go away. And I was like, I need to learn about it if it doesn't go away. So and, yeah, it hasn't gone away.
00:33:26.359 --> 00:33:47.980
But I because I learned so much about it at such a young age, I feel like now I'm just like, I'm getting better, I'm getting more positive. I'm getting i i feel like I'm, like, literally becoming a young adult, because I don't really get upset by it anymore, like I understand it.
00:33:47.980 --> 00:33:53.319
Of course, I'm gonna learn more every day, but it's it's just a part of my life now.
00:33:54.880 --> 00:34:26.539
It really is a journey, and I can tell just, I mean, listening to you, you have a lot of self awareness and maturity. That's like wise for your years, and that journey will continue. I think you've done such an impressive job setting yourself up for for you know where that journey takes you. So really, I applaud that any Does anything come to mind in terms of tips that you would tell someone who's recently diagnosed with TS or a co occurring condition? Of course, everyone's different. But are there any big things you've learned that you would you would tell someone who read as they're diagnosed,
00:34:27.019 --> 00:34:59.619
my tip is, well, it's not really a tip, but I'd say that it's okay to not be okay, because on some days, you're not gonna want to even get up, you're gonna be you're gonna be sore some days because of your tics. You're gonna be just upset about it. And then some days, you'll wake up and you'll be so motivated, and you'll be just fine with your tics. It's it never It's a never ending cycle. It's up and down.
00:34:59.619 --> 00:35:12.719
It's. It's, it's insane, and it's, it's gonna be okay though, like it's, you're gonna be able to survive. You're gonna you're gonna be able to do whatever anyone without track can do.
00:35:13.380 --> 00:35:18.300
It's not stopping you from chasing your dreams or anything.
00:35:18.300 --> 00:35:26.300
It's, you can still do it. You just have to, it might take a little slower. You never know.
00:35:22.519 --> 00:35:50.320
It's even if it takes a little slower amount, you can still get there. You just got to push a little harder than anyone else, and it makes you stronger. So I really think that it's gonna, it's gonna make you stronger, and that's a good thing. You're gonna be stronger than anyone who the people who don't have Tourette, they aren't as strong as us. We have to handle something every day. Sorry, Amanda, you're not as strong as us.
00:35:51.760 --> 00:35:53.079
But it's
00:35:53.079 --> 00:36:09.840
true, the resilience that you get. And yeah, I'm always amazed myself at, like, when I'm having a good day, how, like, almost trivial and like, silly, that the problems of my bad day seem like my confidence and everything, like we have our ups and downs.
00:36:07.500 --> 00:36:29.780
It is like a roller coaster, like you said, and all when you're when you're up, like when things are feeling great, I don't really feel like I think back on the bad days, and it's like, oh, I got through it. It was nothing and and that happened that it kind of always happens, like whenever I'm having a bad day, it's always gonna be followed at some point in time, maybe not the next day, maybe it'll be a week later.
00:36:27.320 --> 00:36:36.199
Some point you're gonna have a good day again. And we're always moving forward, you know. So I think putting it in that perspective is super important.
00:36:36.199 --> 00:36:43.780
And like you said, it's okay to be not okay. Love that. Well, Emily and Amanda, thank you both so much for being on the uptick.
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So glad to have you on and to our listeners. Hope to hope to hear from everyone again soon.
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Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life you.
