Dear Me, It’s Me: Get Your Act Together

Hindsight is 20-20, so I wrote a note to my younger self to explain all the things I wish I had known when I was teenager coming to terms with my cystic fibrosis. 

| 6 min read
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Eirik Gumeny
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Hi, me,

It's me from the future. Yes, we're still here, and no, it wasn't easy.

But it could've been ... well, easi-er, at least.

For starters, do your meds, man. I know they're a pain, but do you know what's worse? Dozens of hospitalizations between the ages of 16 and 34. Your arm is going to look like an unfinished connect-the-dots drawing made out of scar tissue. And once you move out of the pediatric wing, admissions aren't even fun anymore. No one brings you candy or video games; you just have to listen to old people fighting with nurses in the room next door.

Look, I know you're a little mixed up about being sick. You're shy and embarrassed about having to take medications and do therapies, but that is no excuse. You need to do your meds if you want to be healthy, regardless of the situation.

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This, conveniently, brings us to my second point: Own your cystic fibrosis. There's no shame in admitting you have CF, and believe it or not, there are actually some perks. With a doctor's note, and a little backbone, you can go ahead and get yourself a single dorm room when you head off to college, so you can do your meds in peace and avoid walking in on your roommate having a shaving party with the rest of the swim team. (Yes, that really happens, and no, that's not an exaggeration.)

Also -- and don't tell your future wife I told you this -- you can get a handicapped parking permit so you won't have to hike a half-mile uphill to get to class. I mean, you need to exercise, and we'll get to that in a second, but struggling through all that exhaust? Not great. Oh, also? Early boarding on airplanes. All yours if you can find the courage to ask.

Now, back to exercising -- you should do that. I know you ran track in middle school before you started hanging out with all the too cool kids who didn't believe in group activities, and that's fine, but here's the thing you're forgetting: All that running helped you out. It kept your lungs clear. That is an empirically good thing for you. And honestly, it's going to make my life easier too. Because trying to learn how to run again at 38, after not having moved in 20 years, is obnoxious and dumb.

Speaking of stupid: Stop hanging out with smokers. I know this one seems obvious, but I also know you. They seem cool, sure -- and OK, yes, some of them are cute -- but you can still ask them not to smoke around you. If they actually care, they will stop. If they won't? Find better friends.

Also, actually study. Grades matter. College matters. I know you're prone to nihilism and apathy, but trust me, trying is cool. Pick a major and go after it instead of slouching into whatever seems easiest.

This brings us to the larger point I'm trying to make: Plan your life like you're actually going to live it. I know we were told a lot of seriously depressing and disconcerting things about dying young, but turns out, they were all wrong. The life expectancy for people with CF born between 2013 and 2017 is 44 -- or 50 in Canada -- and those numbers keep going up. And look, I know we're not good at math, so I'll spell it out: Both of those numbers are significantly higher than 21, which is the age you're doing most of your “planning” around.

I'm not going to pretend that being told your life has a time limit isn't going to mess you up; it will, and it does, leaving you with lasting damage. But you need to try to ignore it. Because here's the real, dirty truth: Even if that number remained low, even if you were going to die at 21, it wouldn't change anything. You can't live your life in fear, or shame, or by some generalized prediction.

Nothing is guaranteed, good or bad, and there are always outliers. There's a dude with CF right now who looks like Thor, like, legitimately -- and he's not the only one. There's a whole subset of CF bodybuilders, marathon runners, and mountain climbers.

And OK, maybe that's a little too hopeful for you, a little too aspirational. High school is a mess, I get it. So, let's lay this out in a way even your grunge-loving pessimism can understand: A satellite could fall from the sky and explode half a city tonight, but that doesn't stop anyone in New York or Los Angeles or Toronto or wherever from going about their business. There are school shootings and car accidents and cancer, but most of us aren't huddled in our houses too afraid to go out to dinner.

At the end of the day, every life is finite and fragile. But we all keep living anyway -- not in spite of that fact, but because of it. That fleetingness is what gives life value, like a live concert or a limited-edition variant comic book cover.

So, get out of your own head and start acting smart.

After all, if the impending heat-death of the universe isn't going to stop you, why let some arbitrary number get in the way of the rest of your life?

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Eirik Gumeny is a freelance writer and the author of the Exponential Apocalypse sci-fi series. His work has appeared in publications ranging from Cracked to The New York Times. Diagnosed with cystic fibrosis at age 3, Eirik had a double lung transplant in 2014. He lives in Albuquerque, New Mexico, with his wife and their two terrier terrors. His website is egumeny.com, and you can follow him on Twitter and Facebook @egumeny.

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