I.

Throughout September of 2020, I was having an internal crisis surrounding the direction my life was headed and what I could do about it. I started getting around 4 hours of sleep every night and didn’t eat very much, my anxiety kept me up, made my stomach hurt, and made it difficult to focus. I couldn’t remember when I started to feel so stuck—was it the first job post-grad that everyone knows usually fucking sucks, or was it much, much larger than that?

I’ve known for most of my life that I was (am) on a different path than most other people—I’ve had a unique experience that has made me someone who views life in a way only I could. Cystic fibrosis—how could this phrase show up next to my name yet again?—is one of the largest shaping forces in my life. It has dictated how I feel, my temporal range on this earth (probably), but most of all it has necessitated the increased importance I place on each second in life.

The image of 11 pills is my morning pill routine – to be taken with 15 grams of fat, otherwise some medications won’t work (including fat-soluble vitamins). I post that image and I write this all to say that I am coming out. I came out as gay at the ripe & tender age of 17, but coming out of the “Chronically Ill” closet has taken me quite a bit more time. See, whether you knew me as a baby or you know me now, this plethora of medications has always been there keeping me going. Being gay and being ill have been very similar in my experience, most of my waking hours as a kid/adolescent were spent making sure that a) no one knew I was gay, and that b) no one knew I was sick.

Why was I so afraid to fully embrace being sick? After all, there is no cure, it’s a lifelong affliction—acceptance is really the only way to move forward.

Acceptance felt like giving up to me, I was obsessed with the idea of othering people who were in similar circumstances. I was sick, but at least I wasn’t that sick. I was gay, but at least I wasn’t that gay. If I could fight hard enough, these dark parts of me would never see the light of day, they’d be unknown to anyone (perhaps even me).

I got, above all, good at fitting in—I put enough bass in my voice when I spoke to rattle glass, and I never spoke a peep on cf. Infections upon infections, coughing, allergies, stomach pain, bloat, ears ringing, legs tingling, silent. I easily made friends most of my life, and spent as much time (not speaking of cf, obviously) as I could with them from as long as I can remember to distract me from my anxiety (although I wouldn’t know until my early 20s this is what it was).  And it worked well until it didn’t.

II.

When I was a senior in high school, I told my family I was gay—then came out on Twitter publicly. Also that year, at a routine checkup (s/o UVA pediatric pulmonary) we found out that I was harboring two enemies, both bacterial infections of the lungs with patterns of antibiotic resistance. The news was, to say the least, heartbreaking. More infection means more scarring, which means more infection, which means lung decline, which means 1997-xxxx.  The fibrosis in cystic fibrosis basically means scarring, that’s the fear and the thing you’d want to most avoid. And then the years of othering fell on me like pile of bricks. At 17, I was humbled greatly. 

So after I came out, college acceptances were rolling out and I am a procrastinator so obviously didn’t apply anywhere early so I had no clue down which path my future lie. I got into Virginia Tech and W&M among a handful of others, and I was between the two of them. I decided on Tech and told everyone and their brother that’s where I was headed. I didn’t really know why, but I was pretty indifferent between the two. About a week before the deposits were due for school, my mom says to me in the kitchen, looking me in the eyes even though she was doing something else, “Jake, I really think you need to go to a more diverse school.” And this is no insult toward Virginia Tech, my mom was well aware I was one of the few gay kids at my high school, and if you were going to college from my high school, there was a good chance you were going to Tech. I brushed her comment off. I went and sat in my room, having heard rumor of the liberal atmosphere at William & Mary where I would be accepted.

And with that out-of-the-blue unsolicited advice, my mom literally shaped the course of the next four years of my life and beyond. Back to the fugitives in my chest, my healthcare team and I decided we would tackle the easier of the two first as the side effects were significantly less than the treatment of the other. I should pause to mention that we were trying to kill these infections because that’s what you do, not because my lung function was getting significantly worse, in fact I was extremely stable. So the treatment for the easier one was a year’s course of three antibiotics, that I’d start just before my freshman year. Pills actually really don’t bother me; they take no time at all and I can take a shocking number of pills at once (pic on Instagram or more). Physical treatments to loosen mucus in the chest, they take time, but pills are nothing.

And my façade started to break down a little bit freshman year. When people walk into your room and see very full pill organizers and pill bottles upon bottles, you kind of have to be a little open. It was so uncomfortable for me, and that year I remembered why I had really liked to keep this to myself. The look on some people’s faces, that come from such a genuine and caring place, I’ve never been able to stand. The eyes, and sometimes the mouths, that say I don’t know how you do it. don’t realize that what that sounds like to me is, Wow your life fucking sucks. This might seem like a strong conclusion, but my life as-is is all I’ve ever known. I’ve never been free of cf, just as I’ve never been free of the gay.

I don’t want to be called strong, I want to just be. The first time I had heard someone say “a form of to be” I was in my freshman year high school Latin class—First person singular present form of to be? My teacher asked and we responded sum. I am, what powerful two words that I had really never thought of. All I had ever wanted was to just be. I was jealous of the people around me that walked around ignorant and blissful of their own mortality. At 8, my love for Wikipedia began, and I finally decided to read the cursed article Cystic fibrosis. And then I learned of my own mortality. I talked about this with no one, and actually only said it for the first time when I was asked in a group during freshman year at W&M what my “low point” was. 

I was and am one of the lucky ones, I’ve been extremely healthy my entire life, but death anxiety doesn’t disappear. You’re fine now, but the “tree-and-bud” pattern of scarring caused by your fugitives says otherwise, or at least they will eventually. And my way to cope was to spend as much time with other people as possible to distract myself from my own anxiety.

And finally, the slight decline began. Because I have been doing well my entire life, any decline looks severe. The summer before senior year we decided we would tackle the other one (the first one worked). 3 months of IVs and 12 months from a negative culture on oral antibiotics.

And my façade broke down even more.

III.

I had an internship in northern Va. I was planning to take that summer, but I thought all this would be was “A weekend in the hospital, then do the IVs on your own.” Bet. Line inserted, begin medications and the calibration of dosages, two days later, do it on your own. Nope—I was at UVA for a week and a half taking these IVs, getting blood drawn every 4 hours, and all the while, the side effects were killing me, headache, ringing in the ears worsens (I’ve always had it), and the flora of my gut basically just died. And the Zofran wasn’t enough to stifle the nausea, and the conversations with my doctor about how challenging this was weren’t enough. And still, I hadn’t done IVs since I was ~4, so yes, I am one of the lucky ones.

Because the hospital stay, which I thought was to be a weekend, was four days before my internship started, I figured I’d have plenty of time to pop in, pop out, and start. In fact, my car was packed in the parking garage at the hospital. I had to call my manager, tell him the truth, and ask if he could push the start date back a week. Yes, but I can’t push the end date. Done. I get discharged, my mom takes me to McDonald’s, and that following weekend my entire family moved me up there. With a line in my arm, I was to lift like less than 20 lb or something with my right arm. My independence had never felt so fragile. I have been doing all my medication by myself since I was probably around 6 or 7, and now at 20, my entire family had to move me in because I could do nothing. And the crystal ball of what I thought was my future enveloped the scene, I was going to need to be taken care of one day, and the thought terrified me. And still this was helpful as my façade broke down even more.

When I got back to campus, the line was out, the three months were over, and the oral medication began. A special antibiotic on “compassionate use” from the FDA used off-label, that was mentioned to “possibly turn your skin gray.” Lucky for me, I got bronzed by it  And a few others that I took at morning and night. Right before Luke picked me up for the b school, I choked them down with some water and ran to the car. My stomach was still reeling from my summer and now getting hit by the second volley was too much. I didn’t drink for much of my senior fall because my stomach turned at the thought of alcohol (most days). When it started to get cold, the cold realllly bothered me and I became so tired. Weekly blood tests were performed on me so around that time I get a call that I’m borderline anemic due to the regimen, and I didn’t even know what that meant, but take B6 and we’ll monitor was really all we could do. Luckily, that actually seemed to work, and I thought that I was smooth sailing for the rest of my sentence.

The dreaded call came around February, I was checking out at Food Lion self-checkout when I get a call. I am asked if now is a good time, I say yes but am told “Wait until you get home” I speed walked, and then:  They’re not working. Our efforts, the pain, not only were all in vain, but would also make the next time we tried even harder. At least now I could drink again and enjoy what was left of senior year. That was the silver lining in 9 months of fucked-upedness.

Senior year ended up being a blast, and I moved to DC, started work around July. And I quickly knew that the work wasn’t for me. Not only were the hours horseshit, I really didn’t care about what I was doing. I didn’t like the office culture, I didn’t like the way people on my team were spoken to, and I started to think Holy fuck, I have less time than most and this is how I’m choosing to spend it. And I decided to wait out my year and on the 351^st day (365 minus two weeks) I’d put my notice in(COVID threw a wrench in that). Work continued, I met some of my best friends in DC, and loved most of my coworkers. And on December 27^th, 2019, I experienced the first day of the rest of my life:  Trikafta. Effectively, the cause of the disease—the way salt moves incorrectly in and out of cells, along with it, water—would basically be fixed for me. The mucus surrounding my organs, and in my lungs would thin, it’d be easier for me to gain weight, and I could expect my lung function to increase by about 10-15%. All of these things happened, and now I know I am one of the lucky ones. I cheated, I got a second chance, I never really accepted it all and yet, I got out unscathed. I felt like I didn’t learn my lesson that I must’ve had to. I was skipping reincarnations and made it straight to Nirvana. And when so many others cannot?

I had met a few people growing up who had cf, but I distanced myself, physically, and emotionally. It felt too much like before you come out as gay and you haven’t accepted it, and so confronting it, talking to gay people, talking to others in your shoes, will make you have to face it head on, and I wasn’t trying to have a panic attack. I hated when people knew about it before me, I hated when my family told people, I hated when I was asked. So why in the hell would I want to talk to someone like me. I was in the 90% of people who qualified for this treatment due to the specific mutations of both genes. That meant there were 10% of people for whom this treatment did not work. What did I do to deserve the 90%?

Nonetheless, I felt like I was handcuffing myself to a projection of who I thought I should be by not being open, and although I felt like a poseur beginning to talk about it when it was so much better than it had been, I did. And this text is meant to be a culmination of several years of telling the truth and being fully authentic.

IV.

I thought my life would begin after I started the drugs, but the problems that had actually bothered me lifelong, my depression and anxiety, didn’t get better. They actually got worse. And I felt guilty for feeling like that—I had this miraculous second chance and here I was spending it having a goddamn pity party. I would’ve killed for this chance and here I was not enjoying it. Faking a smile did nothing for me now, the distractions of friends disappeared with COVID, work overtook, and my mind spiraled. 

I tried therapy sometime last summer, and for an hour every week, my heart wasn’t pounding, and I was being taught exercises that were meant to help. That one hour wasn’t enough, and nothing changed once the zoom ended. I knew I needed medication, but I had always been so anti-mental medication because I was already taking enough shit, my liver needs a chill. And finally, my anxiety got so bad I could barely sleep. So, I got medication and quit my job in the same week, with nothing in the pipeline, in the middle of a pandemic. 

Now, I have never been better, I sleep so well, I don’t really have much anxiety, and I am enjoying my life again. Plus I’ve got a gig. 

I don’t really know what my reason for conveying this publicly was. I think this last year sitting locked up with so much conflict, the politicization of masks, it’s had me thinking about how little people care. Perhaps people I know don’t care. Perhaps knowing me and reading this makes you care. Perhaps you no longer look with sad eyes at people in wheelchairs or with plastic tubes coming out of their arms. I don’t care what you do. Like the clothes I wear and the music I listen to, I did this for me.

I’m writing this and letting people know I think for a couple reasons, acceptance is not being silent about who you are, but being proud of every aspect, the good, the bad, and especially the ugly. Authenticity disarms people, allows them to be closer to you, and allows you to discover that what you appreciate about yourself, someone else will too. In memory of the countless lives that’ve ended too early, some I’ve known personally, others just heard about, telling my story on behalf of them.

I think it pisses God off if you walk by the color purple in a field somewhere and don’t notice it.

-Shug Avery in The Color Purple by Alice Walker

My story is my color purple, and I think I am pissing the universe off by not sharing it. I do not think there’s a reason for everything. I think talent is spread evenly, but suffering is not. But if there’s something you should know after reading this, it’s that being open will never hurt you, and neither will being compassionate.

I am doing so much better emotionally than I ever thought possible but still have a long way to go. I hope sharing my journey helps you share yours.