Navigating a Chronic Illness at 24

Earlier today, I finally snapped at an engineer at my company after months of passing remarks and probing questions from coworkers about my lifestyle and work schedule. “Seriously, dude, I cannot handle one more person talking to me about my schedule. Sorry, you were just the last straw.” I want to keep this short, but that’ll probably be hard. I need to finally write out this word vomit I’ve been holding down for months.

If you’ve read my other pieces on Medium, you know I have a history battling OCD and its depressive episodes. Still, I have only felt real, bona fide despair three distinguishable times in my life. The tunnel without the light, the fight-or-flight so strong that you flee all the way outside of yourself. One quote from Khaled Hosseini’s And The Mountains Echoed really perfectly characterizes that dark and windy maze I narrowly escaped each time:

I’ve read that if an avalanche buries you and you’re lying there underneath all that snow, you can’t tell which way is up or down. You want to dig yourself out but pick the wrong way, and you dig yourself to your own demise. That was how I felt, disoriented, suspended in confusion, stripped of my compass.

The first time I landed in the center of that maze was in 2013. I remember telling my mom through hopeless sobs that my life was over — “I can’t even see myself one year from now, five years from now”. In 2016, I got trapped twice within two short months of each other. The first brought me to a psychiatrist. The second finally forced me onto medication.

In October 2015, I was diagnosed with a condition called EBMD. The corneal epithelium protecting my corneas is weaker than it should be and causes recurrent corneal erosions. From Wikipedia:

Recurrent corneal erosion is a disorder of the eyes characterized by the failure of the cornea’s outermost layer of epithelial cells to attach to the underlying basement membrane (Bowman’s layer). The condition is excruciatingly painful because the loss of these cells results in the exposure of sensitive corneal nerves. This condition can often leave patients with temporary blindness due to extreme light sensitivity photophobia.

Commonly, erosions occur when patients wake up in the morning. Epithelial cells erode while the patient is asleep, stick to the eyelid, and rip like a scab when the eye opens for the first time.

My condition, like most, started gradually. From January 2015 to my eventual diagnosis that October, I woke up with moderate pain in one or both eyes about one to three times per week. The pain lasted anywhere from 10 seconds to a few minutes, and I’d walk or sleep it off before going about my day and hardly remembering that anything had happened. Occasionally, I’d have days when the eye would not heal so easily; throughout the day, I’d feel a foreign object sensation, have excessive tearing and/or struggle to look at a screen and hold my eye open in meetings.

Eventually, I ended up in the NYU Langone ER with severe pain one Saturday morning in October, after an initial erosion from two days prior that never healed. I found my first of what would become five cornea specialists I’ve met in the last 16 months. He diagnosed me with EBMD.

Initial treatment helped, and then the dry, cold, winter months of late 2015 and early 2016 unraveled all of the progress I thought I’d made. I soon started napping at the office to help my eyes heal. I came to work later and later to sleep off more and more erosions. The more I slept for my eyes, the more my sleep schedule suffered. In February 2016, I got an infected erosion after a night of drinking at a charity event with an open bar. That was the last time I had a drink.

That Sunday night in February, before I saw my specialist the next morning and started treating the infection, was the first time I knew I was, more or less, fucked. I didn’t sleep that night. I couldn’t. I paced around west Soho at 4am in the cold looking for distraction and relief. I described the sensation of blinking to a woman on a crisis hotline, telling her between groans and spirals that it felt like the tip of a knife dragging along my eye.

I missed days of work instead of just hours. Over the next few months, things only got worse. My first specialist either underestimated my pain or didn’t care. Each visit with him had a 60–90 minute wait and ended without a real solution. I turned from NYU to Columbia, where the specialist I waited weeks to see told me that I definitely “don’t have EBMD” and that “doctors love to throw around the word dystrophy to label symptoms they can’t explain”. He prescribed a steroid ointment, and I never went back.

I felt pretty screwed, then, thinking that university doctors were the best options available, and not even they could save me from a condition that was rapidly becoming disabling. I began reading a lot about my condition online and discovered a doctor in Pittsburgh who had written about EBMD in 2010. I contacted his office, told his staff about my experience, and he hopped on the phone with me the following day. I started turning to him for advice and seriously considered traveling to Pittsburgh so he could perform PTK like he recommended. My girlfriend at the time was even willing to go to Pittsburgh with me, and on one of my worse days, we almost did it. It was a mess.

Sooner or later, May and its warmer weather rolled around. My eyes were still terrible. I was missing days of work, up to a week at a time. I brought my girlfriend home to my parents in eastern PA for memorial day weekend and couldn’t even use my worse eye the morning after we got there. I called an old friend’s mom, an ophthalmologist, in the parking lot of my hometown’s CVS, looking for answers. She directed me to a specialist at a practice not far from my house. The fourth of five specialists. This one, Dr. Derham, gave me my life back. It took about a month and two procedures of STK + stromal puncture.

My first revisit with despair, the first in 2016, came the night before my initial procedure with Dr. Derham. At that time, I was deep into weeks of unrelenting and untreatable pain, reading about other patients’ successful and unsuccessful experiences online, knowing I couldn’t live a normal or even good life with eyes so fragile, and not believing that the procedures would actually work.

I finally returned to NYC at the end of June and started my life again with new eyes. I had real PTSD and needed time, lots of time, to feel okay in my own body again. But two months later, I had to face another battle in the war with my body. I don’t want to go into it too much, but I got loud tinnitus in my left ear, and I lost my mind. Honestly, anything could have gone wrong with my health, and I would have fallen apart. I had to go home to PA because I couldn’t take care of myself, and my girlfriend left the country for a week. I began exposure therapy twice per week in NYC and considered McClean’s OCDI. It was too hard. My day started and ended with the parts of my life and myself that I hated, that I needed to escape. So I started and am still on an SSRI to give myself the break I’ve needed, after years of refusing medication. My bedroom is a pharmacy, but I’m doing better.

Last week, I had a repeat procedure done on my right eye with my fifth of five specialists (a college friend of Dr. Derham, my new doctor in NYC). I spent the whole week sleeping, and now I write this from start to finish into the late hours of the night.

It’s not lost on me that I am fortunate enough to work at a company that accommodates my condition and what I need to do to navigate it. It’s truly extraordinary, and I’m incredibly grateful. Huge, massive shoutouts to my work family, managers and teammates who have supported me better than I could have ever imagined. That being said, it can still be hard when [it feels like] most of the people around me don’t understand why I live the way that I do.

So, there are the gruesome details. TL;DR — chronic illness is a tragic, exhausting way to live. I feel so much for anyone living at war with their own body. I hope that, if you were somehow able to strip away all of your health issues, you’d feel like you’re still living your best life. I guess the obvious thing to preach is to try to be careful what we say to people. We have no idea what battles they’re winning or losing, what lifestyle they’d rather be living if they’d been born with different genes or better luck, how many other times they’ve had to hear and laugh off the same exact remark.