WEBVTT
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Welcome to Nicole's Notes, where I try to find a clear thinking about the messiest things.
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Last episode we talked about the master of invisibility.
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How I spent ten years fighting a demon so well that nobody, including myself, could see it.
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Today we're talking about what happens when that invisibility shatters.
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When the demon stops being invisible, and when your body calls your bluff.
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When you finally run out of energy to pretend.
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This is episode four.
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The exacerbation.
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I was dating the star running back for the Caly Dining Squarsty football team.
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He was exactly the kind of guy you'd think he was, cocked me confident.
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He kind of thought life is going to work out because his body had never failed him, of course.
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I was in charge of front-of-house operations for the athletics department.
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That's how we met.
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Through work.
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Through me doing my job and him being impossibly charming.
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But then something happened and I couldn't hide anymore.
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It was 1992, end of my third year.
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My lungs decided to stage a coup.
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I got sick, really sick.
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The kind where your body is saying, We are done.
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We are so done pretending.
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I didn't tell him where I was going.
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I didn't explain.
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I didn't say, hey, I'm going to the hospital for two weeks, catch you later.
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I just ghosted him.
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Now remember, this was back when there was no such thing as a cell phone.
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You actually had landlines.
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And in the hospital, if you were lucky to get a phone, then you had to pay for it.
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And some stupid TV that was 10 channels, again, you'd have to pay for it.
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So it was mostly quite barbaric back then.
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So it was very easy to disappear.
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I went to the hospital and I got the midline IV and the three antibiotics and the machines beeping and the nurses checking on me.
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And I went through it all along.
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And when I got out, I felt better, reprieved.
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Like I'd gotten a second chance.
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Like I could go back to being the girl he wanted me to be.
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And after that, my mom and my aunt took me to Mexico.
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And you know what?
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I looked amazing.
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I know that sounds crazy.
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I was coming off of hospitalization.
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My weight was declining, but in that moment, standing by the pool in a bikini, I felt beautiful.
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I honestly thought, wow, this could be a vogue shoot.
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In my delusion.
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Anyways, this delusion continued.
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I felt great, I looked good.
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So it must be I'm fine.
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So it must mean I could keep doing what I was doing.
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Keep partying, keep hiding, keep performing.
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But my body was already sending signals.
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I just wasn't ready to listen.
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So here's the thing about being a sick girl who's also attractive.
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You can find a boyfriend.
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You can find someone who likes you, someone who thinks you're worth their time.
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And I wasn't desperate.
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I had options.
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I enjoyed the attention.
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There's something powerful about being wanted when you're also invisible.
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When you're managing a disease 24-7 and still having someone look at you like they do.
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But their relationships were never based on honesty.
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I couldn't face it myself, let alone show someone else the truth.
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I avoided sleepovers.
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I planned my dating life around my cough schedule.
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I'd go to their place, but before midnight, before I turned into a pumpkin, I needed to leave.
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I needed to get back to my apartment, where I could do my rapid rehab, where I could cough up the mucus I'd been suppressing all evening, where I could manage the reality of my body in private.
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It wrecked my work that I was always constantly managing.
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But it was the only way I could be normal, the only way a relationship could exist.
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There was this one time I was at his house.
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Four other guys living there.
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Yeah, it was awkward.
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I was so cold.
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And so I needed a bath to warm up.
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So I went upstairs and I filled up the tub.
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Hot water, as hot as I could get it.
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And I just sat there trimmering to warm my body from the inside out.
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Except there wasn't enough hot water.
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Four other guys in the house meant the water ran out.
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I came with shivering, still cold.
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He saw me like that, shaking, vulnerable, and not performing.
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So he did something that surprised me.
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He cuddled me with a blanket and got me warm again.
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Just held me there until my body stopped shaking.
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You know, that moment mattered.
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It showed me that he could see me, that maybe he could handle the reality of my body when it stopped pretending.
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Fuck.
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I was terrified.
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Terrified that if I let him see too much, he would run for the hills.
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And terrified that the only way to keep someone around was to keep performing.
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And unfortunately, I have found that I am still doing this to this day.
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So I've been unpacking that in my journals.
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So I stopped staying over.
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I made him come to my place instead.
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My apartment alone, where I can manage the aftermath in private.
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The relationships were never based on honesty.
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They were based on my ability to hide, to perform, to be on constantly, while simultaneously watching my breath slip away.
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He was actually pretty supportive for being the douchebag he ended up being in the end.
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He tried and he showed up.
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But he was showing up for a version of me that didn't actually exist.
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And that is so exhausting to maintain that when you're also trying not to die.
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It's a hard way to live.
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Always being on, always watching yourself, always wondering if this breath is going to be the one that gives you away.
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By the end of my third year, things got dicey.
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It wasn't just about hiding anymore.
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It was about my body refusing to cooperate with my performance.
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Thursday, Friday, Saturday, I'm out.
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2 a.m., 3 a.m.
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Doesn't matter how late.
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Drinking to pass out, not eating, staying out way too late.
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Then Sunday comes.
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I sleep all day.
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Try to eat.
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Try to catch up on homework.
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I didn't do.
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And try to pretend that my body isn't slowly failing while I'm having the best time of my life.
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Weekdays, hmm.
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I'm slogging myself across campus to get to my 8 a.m.
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classes.
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Which I started to skip because I'm too hungover.
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So I needed someone in class to give me the notes so I can catch up.
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And then I would slog back to rest, study, or get distracted by a roommate for two hours just chatting.
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And then I was also working two days a week, driving south of the city to do invoicing and some data entry.
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Where I was working from two to six, and I'm always the last to leave, so I had to lock up.
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Drive back to campus, eat something, do some homework, and do this all over again.
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But my lungs are in decline.
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So what takes a normal person 20 minutes takes me 40.
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What takes them an hour takes me two.
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I'm constantly short on time, constantly pined, and constantly trying to catch up.
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I was in a race that I was never gonna win.
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Then I'm in summer school because my grades are slipping, so I wanted to spread the downge over a longer period.
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Which means all summer I'm going to school and working and partying.
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A lethal combination.
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All of this while my body is literally trying to end me.
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And the killer, let's be honest, it's the partying.
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It's the drinking to pass out.
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It's the not eating.
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It's staying out way too late.
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I needed days to recover from a single night out, and it compounded everything.
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I was also trying to play basketball to keep my lungs in check, but that was getting harder too.
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The enzyme pills got skipped intentionally, on purpose, because I was embarrassed.
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Because I didn't want to be the girl with the disease.
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I wanted to be the girl who could go party, who could drink, and who could stay out all night.
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Except my body couldn't.
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So I'd spend way more time in the bathroom than anyone should have to spend.
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But I was stupid and desperately trying to fit in.
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I also had this weird timeline in my head.
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Age 28 was my end date.
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So I felt entitled to destroy myself.
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Because really, what did it matter?
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I wasn't going to have many more days anyway.
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Hey, I'm 22, and I had decided that being normal was worth destroying myself or over.
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Now, I want to talk a little bit more about the hospitalizations.
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By the end of my third year, like I said, things got dicey.
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And it wasn't just about hiding anymore.
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It was about my body refusing to cooperate.
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I want to talk about what led up to that hospitalization.
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A couple of weeks before it, I started feeling sick.
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Really sick.
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Like uh sick that I was unfamiliar with.
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The mucus in my lungs became overwhelming.
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Honestly, I felt like I was drowning.
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I couldn't get it out on my own, and it was just filling up my earwigs.
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I would do the clapping therapy on myself in some form of desperation.
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But there was only so many things that I could do before I had to listen to my doctors and agree to be hospitalized.
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To me, this was a failure.
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This was me losing the battle that I had been winning up until that point.
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And I wasn't ready because I hadn't told anyone has to curl those.
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It was a lonely way to hide.
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To keep from exposing this deep dark secret that I thought really shattered this illusion of perfection that I had curated.
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And now I was about to lose that entire identity.
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The fear was immense, the sadness was overwhelming, and the loneliness was crushing.
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But I was also in this weird state of denial.
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I know I needed to go to the hospital.
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My body was telling me that bitch, you cannot do this.
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You have got to go.
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And then my devil on my shoulder was like, you're fine, you can handle this.
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You're invincible.
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Damn it, I was not invincible.
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I was just very good at lying to myself.
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So a couple of weeks into that exacerbation, I had to admit that I could not read.
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I was drowning.
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I had to admit, the illusion was about to be shattered.
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My emotional state when I admitted I needed the hospital, well, I felt disappeared in myself.
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I felt anger, fear, sadness, sadness.
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Um, I would say really scared.
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Because that was when it really told me that I may not get to live long.
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And this is how that downward spiral starts.
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I had spent the last year actively destroying a body that was already doing that for me.
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So I went to the hospital.
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At the time, they would want to use a regular IV because those would get blown by the toxicity of the antibiotics they had to use.
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So I'd have to get a midwine.
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And so it goes higher up in your arm and it goes into a bigger vein, and it's about six inches long, so it kind of threads towards your art.
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Uh, and there's been freezing.
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So it's as awful as you could imagine.
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But it managed to stay in place for the two weeks with the three very toxic drugs.
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So I guess I was grateful.
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I mean, it was better than having IVs blow every second or third day.
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Within a few days of this Tariq admission, I could breathe again.
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I felt like, oh, okay, okay, we can get back to that illusion.
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Hmm.
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But let's be honest, I hated every fucking minute in the hospital.
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And like I said, there was no phone, no TV, no link to the outside world, and Abatou, it was very expensive to call long distance from Payphone to where my parents live seven hours away.
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And it's so noisy, the constant noise.
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The food is disgusting.
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And the tests they had to do at god-awful hours make rest impossible.
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You're trying to sleep at 2 a.m.
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and someone is coming to draw blood or check your vitals or do some procedure but can't wait until morning.
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I cried myself to sleep every night.
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I really did.
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You know, when that last nurse left at Shift Change at Little Levin, I felt life I was the only person on the planet.
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And no one was coming to save me.
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At least I had sleepy.
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The one who had been by my side since I was five years old.
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He was there.
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He was always there.
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And the nurses were nice.
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He liked my sassiness.
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But they couldn't fill the void of being completely isolated from the world I'd just been living in.
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A couple of roommates came to visit.
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I mean, they had no idea how scared really was.
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I didn't really explain it, but kind of leveled it up to being getting tonsils removed.
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But they just knew their friend was in the hospital.
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I was understanding for the first time that I had no power to stop it.
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That I had to resign myself to the reality that CF was in control now and not me.
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It felt complicated and sad.
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I mean, it was a complete buzzkill.
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But as I was getting better, all I wanted to do was sleep.
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So I slept whenever I could.
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The destructions were plentiful, but I was usually asleep during the downtime anyway.
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When I got out of the hospital, I felt like I got a redo.
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That fresh start, that second chance.
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I was supposed to learn my lesson.
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Shocker, I didn't.
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After missing so much school, I was actually quite happy that my professors were very forgiving and lenient and let me do assignments when I could get them in.
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So I felt that pressure was lifted.
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I was supposed to go back to taking care of myself, eating properly, taking my enzymes, and not destroying my body.
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But I didn't learn that lesson.
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It just felt like I had been given a reprieve.
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So I tried a little bit up my exercise game.
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I tried to do basketball again, or tried to get back to my mom, but I don't have a bad night coughing or I'd go out and party and the whole thing would fall off.
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The truth is, I wasn't ready to accept that I was sick.
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I was not ready to accept that my invincible years were about to be over.
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And I was not happy that my body had betrayed me.
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So I just kept pretending.
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And my body kept getting sicker.
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I was losing weight, gradually at first, a couple of pounds every month.
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The sicker I got, the more I lost.
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It was a slow, inevitable decline over several years, and I was noticing it.
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I was adapting to it, parking as close to my own office as possible, so I didn't have to walk as far.
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Driving across campus to class instead of walking.
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Little concessions that I thought nobody would notice.
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And nobody really did, but I did.
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Every month I was losing a little bit more of myself.
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But I was still trying to perform.
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Still going on that stage, still trying to be the athlete, still trying to be the girl with no limitations.
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Except I was limited.
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I was very, very limited.
00:18:25.440 --> 00:18:30.480
Thankfully, I had a genetic form of Siete that didn't bring severe complications.
00:18:31.279 --> 00:18:37.279
So even though I kept exacerbating, I managed to keep hospitalizations down to the minimum.
00:18:37.440 --> 00:18:41.279
So from 92 to 98, I had five more.
00:18:42.640 --> 00:18:47.279
I mean, five more surrenders, through fact my body was in control, but in between I could hide.
00:18:47.359 --> 00:18:59.759
But the problem was each time I came out thinking I could go back to normal, back to performing, and back to being invincible, I was sorely mistaken.
00:19:02.000 --> 00:19:06.880
By my fourth year of university, my exercise tolerance was becoming non-existent.
00:19:07.200 --> 00:19:10.079
I was coughing up mucus into cups.
00:19:10.799 --> 00:19:11.680
Literal cups.
00:19:11.759 --> 00:19:15.519
I'd cough it up, spit it into a cup, and dump it down the toilet.
00:19:16.160 --> 00:19:18.079
My roommates could see it happening.
00:19:18.240 --> 00:19:21.359
There was no more performance, no more invisibility.
00:19:21.759 --> 00:19:26.000
The master of invisibility had completely shattered.
00:19:26.160 --> 00:19:30.720
I was failing classes because an ADN class was impossible to get to.
00:19:30.880 --> 00:19:33.519
So I'd skip and then I'd skip another.
00:19:33.920 --> 00:19:36.319
Then I was just not going to class anymore.
00:19:36.480 --> 00:19:38.400
My grades were atrocious.
00:19:38.559 --> 00:19:40.960
It's actually a miracle that I graduated.
00:19:41.359 --> 00:19:44.319
I mean GPA wasn't horrible.
00:19:44.559 --> 00:19:50.000
I mean, I wasn't on the dean's vacation list, but probably pretty close.
00:19:51.759 --> 00:19:58.640
Anyway, I was still fighting, still trying, and still pushing my body past what it could handle.
00:19:59.279 --> 00:20:01.920
I was officially on borrowed time.
00:20:02.480 --> 00:20:04.559
And now I was wasting it.
00:20:05.200 --> 00:20:08.079
And I still didn't understand that yet.
00:20:09.279 --> 00:20:12.960
The exasperation at 22 was supposed to teach me something.
00:20:13.200 --> 00:20:15.519
It was supposed to be a wake-up call.
00:20:15.920 --> 00:20:21.039
A moment where I realized I couldn't destroy myself and expect so what?
00:20:22.079 --> 00:20:26.480
Instead, it was just the beginning of a longer decline.
00:20:27.519 --> 00:20:33.359
Five more hospitalizations, five more times my body had to remind me that it was in control.
00:20:34.079 --> 00:20:40.000
Five more times I had to surrender to the disease I'd spent 10 years pretending didn't exist.
00:20:40.559 --> 00:20:47.119
Next episode, we're going to talk about what happened when the decline became impossible to hide.
00:20:47.359 --> 00:20:53.279
When I went from 120 pounds to 74 pounds in seven years.
00:20:53.519 --> 00:21:03.200
When my doctors looked me in the eye and said, You are going to die unless we insert a feeding tube into your stomach.
00:21:03.519 --> 00:21:08.000
When I had a complete mental breakdown looking at another patient speaking to.
00:00:09.919 --> 00:00:16.399
Welcome to Nicole's Notes, where I try to find a clear thinking about the messiest things.
00:00:17.280 --> 00:00:21.760
Last episode we talked about the master of invisibility.
00:00:22.160 --> 00:00:30.480
How I spent ten years fighting a demon so well that nobody, including myself, could see it.
00:00:31.039 --> 00:00:36.000
Today we're talking about what happens when that invisibility shatters.
00:00:36.479 --> 00:00:41.119
When the demon stops being invisible, and when your body calls your bluff.
00:00:41.759 --> 00:00:44.880
When you finally run out of energy to pretend.
00:00:45.840 --> 00:00:47.840
This is episode four.
00:00:48.159 --> 00:00:49.840
The exacerbation.
00:00:52.079 --> 00:00:57.119
I was dating the star running back for the Caly Dining Squarsty football team.
00:00:57.439 --> 00:01:00.960
He was exactly the kind of guy you'd think he was, cocked me confident.
00:01:02.320 --> 00:01:06.719
He kind of thought life is going to work out because his body had never failed him, of course.
00:01:07.040 --> 00:01:11.359
I was in charge of front-of-house operations for the athletics department.
00:01:11.599 --> 00:01:12.799
That's how we met.
00:01:12.959 --> 00:01:13.920
Through work.
00:01:14.239 --> 00:01:17.840
Through me doing my job and him being impossibly charming.
00:01:18.400 --> 00:01:22.239
But then something happened and I couldn't hide anymore.
00:01:23.840 --> 00:01:27.439
It was 1992, end of my third year.
00:01:27.680 --> 00:01:30.640
My lungs decided to stage a coup.
00:01:31.040 --> 00:01:33.200
I got sick, really sick.
00:01:33.840 --> 00:01:36.400
The kind where your body is saying, We are done.
00:01:36.560 --> 00:01:38.959
We are so done pretending.
00:01:39.760 --> 00:01:41.599
I didn't tell him where I was going.
00:01:41.760 --> 00:01:42.640
I didn't explain.
00:01:42.799 --> 00:01:46.719
I didn't say, hey, I'm going to the hospital for two weeks, catch you later.
00:01:47.280 --> 00:01:49.040
I just ghosted him.
00:01:51.200 --> 00:01:56.480
Now remember, this was back when there was no such thing as a cell phone.
00:01:56.799 --> 00:01:59.120
You actually had landlines.
00:01:59.359 --> 00:02:04.239
And in the hospital, if you were lucky to get a phone, then you had to pay for it.
00:02:04.400 --> 00:02:09.840
And some stupid TV that was 10 channels, again, you'd have to pay for it.
00:02:10.240 --> 00:02:15.199
So it was mostly quite barbaric back then.
00:02:15.360 --> 00:02:18.240
So it was very easy to disappear.
00:02:19.280 --> 00:02:27.280
I went to the hospital and I got the midline IV and the three antibiotics and the machines beeping and the nurses checking on me.
00:02:27.599 --> 00:02:29.680
And I went through it all along.
00:02:29.919 --> 00:02:33.840
And when I got out, I felt better, reprieved.
00:02:34.319 --> 00:02:36.639
Like I'd gotten a second chance.
00:02:37.439 --> 00:02:40.719
Like I could go back to being the girl he wanted me to be.
00:02:41.759 --> 00:02:45.439
And after that, my mom and my aunt took me to Mexico.
00:02:45.840 --> 00:02:46.719
And you know what?
00:02:46.879 --> 00:02:47.840
I looked amazing.
00:02:48.000 --> 00:02:49.039
I know that sounds crazy.
00:02:49.199 --> 00:02:51.199
I was coming off of hospitalization.
00:02:51.520 --> 00:02:58.319
My weight was declining, but in that moment, standing by the pool in a bikini, I felt beautiful.
00:02:58.560 --> 00:03:01.599
I honestly thought, wow, this could be a vogue shoot.
00:03:01.919 --> 00:03:03.360
In my delusion.
00:03:03.840 --> 00:03:06.719
Anyways, this delusion continued.
00:03:06.879 --> 00:03:08.560
I felt great, I looked good.
00:03:08.879 --> 00:03:10.879
So it must be I'm fine.
00:03:11.039 --> 00:03:14.000
So it must mean I could keep doing what I was doing.
00:03:14.319 --> 00:03:16.800
Keep partying, keep hiding, keep performing.
00:03:18.560 --> 00:03:21.280
But my body was already sending signals.
00:03:21.360 --> 00:03:23.280
I just wasn't ready to listen.
00:03:24.479 --> 00:03:27.439
So here's the thing about being a sick girl who's also attractive.
00:03:27.520 --> 00:03:28.879
You can find a boyfriend.
00:03:29.039 --> 00:03:32.800
You can find someone who likes you, someone who thinks you're worth their time.
00:03:32.960 --> 00:03:34.319
And I wasn't desperate.
00:03:34.560 --> 00:03:35.439
I had options.
00:03:35.599 --> 00:03:37.120
I enjoyed the attention.
00:03:37.360 --> 00:03:41.360
There's something powerful about being wanted when you're also invisible.
00:03:41.599 --> 00:03:47.199
When you're managing a disease 24-7 and still having someone look at you like they do.
00:03:48.639 --> 00:03:51.840
But their relationships were never based on honesty.
00:03:52.080 --> 00:03:55.840
I couldn't face it myself, let alone show someone else the truth.
00:03:56.080 --> 00:03:57.680
I avoided sleepovers.
00:03:57.759 --> 00:04:00.560
I planned my dating life around my cough schedule.
00:04:00.719 --> 00:04:06.159
I'd go to their place, but before midnight, before I turned into a pumpkin, I needed to leave.
00:04:06.319 --> 00:04:18.879
I needed to get back to my apartment, where I could do my rapid rehab, where I could cough up the mucus I'd been suppressing all evening, where I could manage the reality of my body in private.
00:04:21.199 --> 00:04:25.920
It wrecked my work that I was always constantly managing.
00:04:26.319 --> 00:04:30.639
But it was the only way I could be normal, the only way a relationship could exist.
00:04:31.279 --> 00:04:33.519
There was this one time I was at his house.
00:04:33.839 --> 00:04:35.040
Four other guys living there.
00:04:35.120 --> 00:04:36.480
Yeah, it was awkward.
00:04:36.879 --> 00:04:38.000
I was so cold.
00:04:38.079 --> 00:04:40.240
And so I needed a bath to warm up.
00:04:40.480 --> 00:04:42.560
So I went upstairs and I filled up the tub.
00:04:42.720 --> 00:04:44.879
Hot water, as hot as I could get it.
00:04:45.120 --> 00:04:48.800
And I just sat there trimmering to warm my body from the inside out.
00:04:49.439 --> 00:04:51.680
Except there wasn't enough hot water.
00:04:51.920 --> 00:04:54.720
Four other guys in the house meant the water ran out.
00:04:55.360 --> 00:04:58.000
I came with shivering, still cold.
00:04:58.240 --> 00:05:02.639
He saw me like that, shaking, vulnerable, and not performing.
00:05:02.959 --> 00:05:05.519
So he did something that surprised me.
00:05:05.759 --> 00:05:09.120
He cuddled me with a blanket and got me warm again.
00:05:09.360 --> 00:05:12.399
Just held me there until my body stopped shaking.
00:05:13.279 --> 00:05:15.439
You know, that moment mattered.
00:05:15.680 --> 00:05:23.519
It showed me that he could see me, that maybe he could handle the reality of my body when it stopped pretending.
00:05:24.639 --> 00:05:25.279
Fuck.
00:05:25.519 --> 00:05:26.720
I was terrified.
00:05:26.959 --> 00:05:32.000
Terrified that if I let him see too much, he would run for the hills.
00:05:32.959 --> 00:05:37.759
And terrified that the only way to keep someone around was to keep performing.
00:05:38.560 --> 00:05:45.040
And unfortunately, I have found that I am still doing this to this day.
00:05:45.839 --> 00:05:49.439
So I've been unpacking that in my journals.
00:05:51.519 --> 00:05:53.199
So I stopped staying over.
00:05:54.000 --> 00:05:56.319
I made him come to my place instead.
00:05:56.639 --> 00:06:01.120
My apartment alone, where I can manage the aftermath in private.
00:06:01.920 --> 00:06:04.560
The relationships were never based on honesty.
00:06:04.639 --> 00:06:14.079
They were based on my ability to hide, to perform, to be on constantly, while simultaneously watching my breath slip away.
00:06:14.240 --> 00:06:19.120
He was actually pretty supportive for being the douchebag he ended up being in the end.
00:06:19.519 --> 00:06:21.360
He tried and he showed up.
00:06:21.519 --> 00:06:25.680
But he was showing up for a version of me that didn't actually exist.
00:06:26.639 --> 00:06:33.600
And that is so exhausting to maintain that when you're also trying not to die.
00:06:35.120 --> 00:06:36.639
It's a hard way to live.
00:06:36.800 --> 00:06:43.360
Always being on, always watching yourself, always wondering if this breath is going to be the one that gives you away.
00:06:43.600 --> 00:06:45.839
By the end of my third year, things got dicey.
00:06:46.000 --> 00:06:47.759
It wasn't just about hiding anymore.
00:06:47.839 --> 00:06:52.639
It was about my body refusing to cooperate with my performance.
00:06:53.519 --> 00:06:56.160
Thursday, Friday, Saturday, I'm out.
00:06:56.399 --> 00:06:57.839
2 a.m., 3 a.m.
00:06:58.160 --> 00:06:59.519
Doesn't matter how late.
00:06:59.920 --> 00:07:05.040
Drinking to pass out, not eating, staying out way too late.
00:07:05.279 --> 00:07:06.399
Then Sunday comes.
00:07:06.800 --> 00:07:07.759
I sleep all day.
00:07:07.920 --> 00:07:08.720
Try to eat.
00:07:08.959 --> 00:07:10.319
Try to catch up on homework.
00:07:10.399 --> 00:07:11.199
I didn't do.
00:07:11.680 --> 00:07:18.399
And try to pretend that my body isn't slowly failing while I'm having the best time of my life.
00:07:18.720 --> 00:07:19.920
Weekdays, hmm.
00:07:20.000 --> 00:07:23.279
I'm slogging myself across campus to get to my 8 a.m.
00:07:23.519 --> 00:07:24.160
classes.
00:07:24.480 --> 00:07:28.079
Which I started to skip because I'm too hungover.
00:07:28.399 --> 00:07:31.839
So I needed someone in class to give me the notes so I can catch up.
00:07:32.000 --> 00:07:38.399
And then I would slog back to rest, study, or get distracted by a roommate for two hours just chatting.
00:07:38.639 --> 00:07:46.720
And then I was also working two days a week, driving south of the city to do invoicing and some data entry.
00:07:47.040 --> 00:07:52.079
Where I was working from two to six, and I'm always the last to leave, so I had to lock up.
00:07:52.560 --> 00:07:58.800
Drive back to campus, eat something, do some homework, and do this all over again.
00:08:00.000 --> 00:08:01.680
But my lungs are in decline.
00:08:01.759 --> 00:08:04.959
So what takes a normal person 20 minutes takes me 40.
00:08:05.360 --> 00:08:07.519
What takes them an hour takes me two.
00:08:08.079 --> 00:08:13.040
I'm constantly short on time, constantly pined, and constantly trying to catch up.
00:08:13.759 --> 00:08:16.560
I was in a race that I was never gonna win.
00:08:17.600 --> 00:08:22.720
Then I'm in summer school because my grades are slipping, so I wanted to spread the downge over a longer period.
00:08:22.879 --> 00:08:26.959
Which means all summer I'm going to school and working and partying.
00:08:27.279 --> 00:08:28.720
A lethal combination.
00:08:28.879 --> 00:08:33.600
All of this while my body is literally trying to end me.
00:08:34.639 --> 00:08:38.879
And the killer, let's be honest, it's the partying.
00:08:39.039 --> 00:08:41.120
It's the drinking to pass out.
00:08:41.600 --> 00:08:42.960
It's the not eating.
00:08:43.120 --> 00:08:45.360
It's staying out way too late.
00:08:45.600 --> 00:08:51.360
I needed days to recover from a single night out, and it compounded everything.
00:08:51.679 --> 00:08:57.039
I was also trying to play basketball to keep my lungs in check, but that was getting harder too.
00:08:57.519 --> 00:09:03.679
The enzyme pills got skipped intentionally, on purpose, because I was embarrassed.
00:09:03.919 --> 00:09:05.919
Because I didn't want to be the girl with the disease.
00:09:06.000 --> 00:09:11.279
I wanted to be the girl who could go party, who could drink, and who could stay out all night.
00:09:12.080 --> 00:09:14.559
Except my body couldn't.
00:09:14.799 --> 00:09:19.120
So I'd spend way more time in the bathroom than anyone should have to spend.
00:09:19.360 --> 00:09:23.759
But I was stupid and desperately trying to fit in.
00:09:24.559 --> 00:09:27.519
I also had this weird timeline in my head.
00:09:27.840 --> 00:09:30.879
Age 28 was my end date.
00:09:31.519 --> 00:09:34.480
So I felt entitled to destroy myself.
00:09:34.799 --> 00:09:36.799
Because really, what did it matter?
00:09:37.039 --> 00:09:39.600
I wasn't going to have many more days anyway.
00:09:40.240 --> 00:09:45.679
Hey, I'm 22, and I had decided that being normal was worth destroying myself or over.
00:09:46.000 --> 00:09:49.759
Now, I want to talk a little bit more about the hospitalizations.
00:09:50.080 --> 00:09:53.279
By the end of my third year, like I said, things got dicey.
00:09:53.440 --> 00:09:55.759
And it wasn't just about hiding anymore.
00:09:55.919 --> 00:09:58.320
It was about my body refusing to cooperate.
00:09:58.480 --> 00:10:01.440
I want to talk about what led up to that hospitalization.
00:10:02.480 --> 00:10:05.279
A couple of weeks before it, I started feeling sick.
00:10:05.600 --> 00:10:06.639
Really sick.
00:10:07.200 --> 00:10:10.639
Like uh sick that I was unfamiliar with.
00:10:11.039 --> 00:10:13.679
The mucus in my lungs became overwhelming.
00:10:13.840 --> 00:10:16.159
Honestly, I felt like I was drowning.
00:10:17.519 --> 00:10:23.519
I couldn't get it out on my own, and it was just filling up my earwigs.
00:10:23.840 --> 00:10:28.480
I would do the clapping therapy on myself in some form of desperation.
00:10:30.240 --> 00:10:40.879
But there was only so many things that I could do before I had to listen to my doctors and agree to be hospitalized.
00:10:41.519 --> 00:10:46.080
To me, this was a failure.
00:10:46.559 --> 00:10:55.519
This was me losing the battle that I had been winning up until that point.
00:10:56.240 --> 00:11:02.399
And I wasn't ready because I hadn't told anyone has to curl those.
00:11:02.559 --> 00:11:07.759
It was a lonely way to hide.
00:11:08.480 --> 00:11:20.799
To keep from exposing this deep dark secret that I thought really shattered this illusion of perfection that I had curated.
00:11:22.879 --> 00:11:27.360
And now I was about to lose that entire identity.
00:11:28.080 --> 00:11:35.519
The fear was immense, the sadness was overwhelming, and the loneliness was crushing.
00:11:36.480 --> 00:11:40.240
But I was also in this weird state of denial.
00:11:40.879 --> 00:11:43.120
I know I needed to go to the hospital.
00:11:43.440 --> 00:11:47.759
My body was telling me that bitch, you cannot do this.
00:11:48.159 --> 00:11:49.600
You have got to go.
00:11:49.840 --> 00:11:56.320
And then my devil on my shoulder was like, you're fine, you can handle this.
00:11:56.480 --> 00:11:57.919
You're invincible.
00:11:58.799 --> 00:12:01.519
Damn it, I was not invincible.
00:12:01.840 --> 00:12:05.440
I was just very good at lying to myself.
00:12:05.600 --> 00:12:10.320
So a couple of weeks into that exacerbation, I had to admit that I could not read.
00:12:10.559 --> 00:12:12.080
I was drowning.
00:12:12.480 --> 00:12:16.879
I had to admit, the illusion was about to be shattered.
00:12:18.639 --> 00:12:26.320
My emotional state when I admitted I needed the hospital, well, I felt disappeared in myself.
00:12:26.559 --> 00:12:31.519
I felt anger, fear, sadness, sadness.
00:12:31.679 --> 00:12:34.559
Um, I would say really scared.
00:12:35.279 --> 00:12:43.679
Because that was when it really told me that I may not get to live long.
00:12:44.879 --> 00:12:48.240
And this is how that downward spiral starts.
00:12:49.679 --> 00:12:57.279
I had spent the last year actively destroying a body that was already doing that for me.
00:12:58.799 --> 00:13:00.799
So I went to the hospital.
00:13:01.600 --> 00:13:10.000
At the time, they would want to use a regular IV because those would get blown by the toxicity of the antibiotics they had to use.
00:13:10.240 --> 00:13:12.159
So I'd have to get a midwine.
00:13:12.639 --> 00:13:21.600
And so it goes higher up in your arm and it goes into a bigger vein, and it's about six inches long, so it kind of threads towards your art.
00:13:22.639 --> 00:13:24.879
Uh, and there's been freezing.
00:13:25.679 --> 00:13:29.279
So it's as awful as you could imagine.
00:13:30.559 --> 00:13:38.879
But it managed to stay in place for the two weeks with the three very toxic drugs.
00:13:40.240 --> 00:13:42.000
So I guess I was grateful.
00:13:42.080 --> 00:13:45.679
I mean, it was better than having IVs blow every second or third day.
00:13:45.840 --> 00:13:50.720
Within a few days of this Tariq admission, I could breathe again.
00:13:51.120 --> 00:13:57.039
I felt like, oh, okay, okay, we can get back to that illusion.
00:13:57.679 --> 00:13:58.320
Hmm.
00:14:00.559 --> 00:14:05.440
But let's be honest, I hated every fucking minute in the hospital.
00:14:05.759 --> 00:14:19.840
And like I said, there was no phone, no TV, no link to the outside world, and Abatou, it was very expensive to call long distance from Payphone to where my parents live seven hours away.
00:14:21.120 --> 00:14:23.679
And it's so noisy, the constant noise.
00:14:23.840 --> 00:14:25.600
The food is disgusting.
00:14:25.919 --> 00:14:30.480
And the tests they had to do at god-awful hours make rest impossible.
00:14:30.799 --> 00:14:32.240
You're trying to sleep at 2 a.m.
00:14:32.399 --> 00:14:38.080
and someone is coming to draw blood or check your vitals or do some procedure but can't wait until morning.
00:14:38.240 --> 00:14:40.399
I cried myself to sleep every night.
00:14:40.639 --> 00:14:41.600
I really did.
00:14:42.480 --> 00:14:52.080
You know, when that last nurse left at Shift Change at Little Levin, I felt life I was the only person on the planet.
00:14:53.039 --> 00:14:55.440
And no one was coming to save me.
00:14:56.639 --> 00:14:58.399
At least I had sleepy.
00:15:02.159 --> 00:15:05.279
The one who had been by my side since I was five years old.
00:15:05.440 --> 00:15:06.399
He was there.
00:15:07.039 --> 00:15:08.320
He was always there.
00:15:08.559 --> 00:15:10.320
And the nurses were nice.
00:15:10.639 --> 00:15:12.399
He liked my sassiness.
00:15:12.720 --> 00:15:19.360
But they couldn't fill the void of being completely isolated from the world I'd just been living in.
00:15:20.720 --> 00:15:22.639
A couple of roommates came to visit.
00:15:22.799 --> 00:15:25.360
I mean, they had no idea how scared really was.
00:15:25.759 --> 00:15:32.080
I didn't really explain it, but kind of leveled it up to being getting tonsils removed.
00:15:33.120 --> 00:15:36.960
But they just knew their friend was in the hospital.
00:15:39.759 --> 00:15:44.559
I was understanding for the first time that I had no power to stop it.
00:15:45.120 --> 00:15:52.080
That I had to resign myself to the reality that CF was in control now and not me.
00:15:53.360 --> 00:15:58.159
It felt complicated and sad.
00:15:58.960 --> 00:16:01.440
I mean, it was a complete buzzkill.
00:16:02.480 --> 00:16:05.519
But as I was getting better, all I wanted to do was sleep.
00:16:05.600 --> 00:16:07.440
So I slept whenever I could.
00:16:07.679 --> 00:16:12.159
The destructions were plentiful, but I was usually asleep during the downtime anyway.
00:16:13.679 --> 00:16:16.720
When I got out of the hospital, I felt like I got a redo.
00:16:17.279 --> 00:16:20.240
That fresh start, that second chance.
00:16:20.960 --> 00:16:23.360
I was supposed to learn my lesson.
00:16:25.440 --> 00:16:27.679
Shocker, I didn't.
00:16:27.919 --> 00:16:39.039
After missing so much school, I was actually quite happy that my professors were very forgiving and lenient and let me do assignments when I could get them in.
00:16:39.279 --> 00:16:41.519
So I felt that pressure was lifted.
00:16:41.600 --> 00:16:49.679
I was supposed to go back to taking care of myself, eating properly, taking my enzymes, and not destroying my body.
00:16:50.320 --> 00:16:52.320
But I didn't learn that lesson.
00:16:53.440 --> 00:16:57.440
It just felt like I had been given a reprieve.
00:16:59.120 --> 00:17:02.080
So I tried a little bit up my exercise game.
00:17:02.240 --> 00:17:11.599
I tried to do basketball again, or tried to get back to my mom, but I don't have a bad night coughing or I'd go out and party and the whole thing would fall off.
00:17:12.880 --> 00:17:16.240
The truth is, I wasn't ready to accept that I was sick.
00:17:16.559 --> 00:17:21.440
I was not ready to accept that my invincible years were about to be over.
00:17:22.640 --> 00:17:27.119
And I was not happy that my body had betrayed me.
00:17:27.279 --> 00:17:29.119
So I just kept pretending.
00:17:29.759 --> 00:17:32.160
And my body kept getting sicker.
00:17:32.480 --> 00:17:36.799
I was losing weight, gradually at first, a couple of pounds every month.
00:17:37.039 --> 00:17:39.519
The sicker I got, the more I lost.
00:17:40.240 --> 00:17:45.599
It was a slow, inevitable decline over several years, and I was noticing it.
00:17:45.839 --> 00:17:52.240
I was adapting to it, parking as close to my own office as possible, so I didn't have to walk as far.
00:17:52.559 --> 00:17:56.079
Driving across campus to class instead of walking.
00:17:56.799 --> 00:17:59.839
Little concessions that I thought nobody would notice.
00:18:00.319 --> 00:18:02.559
And nobody really did, but I did.
00:18:03.200 --> 00:18:07.440
Every month I was losing a little bit more of myself.
00:18:08.000 --> 00:18:10.160
But I was still trying to perform.
00:18:10.640 --> 00:18:17.680
Still going on that stage, still trying to be the athlete, still trying to be the girl with no limitations.
00:18:19.119 --> 00:18:20.880
Except I was limited.
00:18:21.119 --> 00:18:23.759
I was very, very limited.
00:18:25.440 --> 00:18:30.480
Thankfully, I had a genetic form of Siete that didn't bring severe complications.
00:18:31.279 --> 00:18:37.279
So even though I kept exacerbating, I managed to keep hospitalizations down to the minimum.
00:18:37.440 --> 00:18:41.279
So from 92 to 98, I had five more.
00:18:42.640 --> 00:18:47.279
I mean, five more surrenders, through fact my body was in control, but in between I could hide.
00:18:47.359 --> 00:18:59.759
But the problem was each time I came out thinking I could go back to normal, back to performing, and back to being invincible, I was sorely mistaken.
00:19:02.000 --> 00:19:06.880
By my fourth year of university, my exercise tolerance was becoming non-existent.
00:19:07.200 --> 00:19:10.079
I was coughing up mucus into cups.
00:19:10.799 --> 00:19:11.680
Literal cups.
00:19:11.759 --> 00:19:15.519
I'd cough it up, spit it into a cup, and dump it down the toilet.
00:19:16.160 --> 00:19:18.079
My roommates could see it happening.
00:19:18.240 --> 00:19:21.359
There was no more performance, no more invisibility.
00:19:21.759 --> 00:19:26.000
The master of invisibility had completely shattered.
00:19:26.160 --> 00:19:30.720
I was failing classes because an ADN class was impossible to get to.
00:19:30.880 --> 00:19:33.519
So I'd skip and then I'd skip another.
00:19:33.920 --> 00:19:36.319
Then I was just not going to class anymore.
00:19:36.480 --> 00:19:38.400
My grades were atrocious.
00:19:38.559 --> 00:19:40.960
It's actually a miracle that I graduated.
00:19:41.359 --> 00:19:44.319
I mean GPA wasn't horrible.
00:19:44.559 --> 00:19:50.000
I mean, I wasn't on the dean's vacation list, but probably pretty close.
00:19:51.759 --> 00:19:58.640
Anyway, I was still fighting, still trying, and still pushing my body past what it could handle.
00:19:59.279 --> 00:20:01.920
I was officially on borrowed time.
00:20:02.480 --> 00:20:04.559
And now I was wasting it.
00:20:05.200 --> 00:20:08.079
And I still didn't understand that yet.
00:20:09.279 --> 00:20:12.960
The exasperation at 22 was supposed to teach me something.
00:20:13.200 --> 00:20:15.519
It was supposed to be a wake-up call.
00:20:15.920 --> 00:20:21.039
A moment where I realized I couldn't destroy myself and expect so what?
00:20:22.079 --> 00:20:26.480
Instead, it was just the beginning of a longer decline.
00:20:27.519 --> 00:20:33.359
Five more hospitalizations, five more times my body had to remind me that it was in control.
00:20:34.079 --> 00:20:40.000
Five more times I had to surrender to the disease I'd spent 10 years pretending didn't exist.
00:20:40.559 --> 00:20:47.119
Next episode, we're going to talk about what happened when the decline became impossible to hide.
00:20:47.359 --> 00:20:53.279
When I went from 120 pounds to 74 pounds in seven years.
00:20:53.519 --> 00:21:03.200
When my doctors looked me in the eye and said, You are going to die unless we insert a feeding tube into your stomach.
00:21:03.519 --> 00:21:08.000
When I had a complete mental breakdown looking at another patient speaking to.
