25

So today is my 25th birthday. I knew I wanted to write something, but it was unbelievably difficult to get started. Sometimes you have so much to say that it’s easier to say nothing at all. But you don’t get very far by doing what’s easy, so I’m going to do my best to speak my piece. I’ll start by saying that, like mostly everyone, this past year and a half for me has been about learning some new lessons, and being reminded of others. 2021 thus far has been one hell of a teacher.

Back in March, I got an infection (not COVID lol) and was prescribed some antibiotics, as is the norm. I wasn’t feeling better a few days into my antibiotic course, in fact I was feeling worse. Specifically I felt ridiculous levels of lethargy, and I couldn’t take too many steps without getting exhausted. I grew increasingly worried about my own wellbeing as the week wore on, until one night when things came to a head. Earlier that day, I had literally fainted on my way to the bathroom and woke up on the ground. I spent the rest of the day panicked, hoping that incident wouldn’t repeat itself. Sitting on my couch that night, my vision began to blur and black out. I heard ringing in my ears. My breath was shallow, and yet seemed to echo through my entire body. I grabbed my phone, as I couldn’t shake the feeling that if I didn’t get help right then, I wouldn’t make it through the night. I can’t quite express how it feels to muster one’s energy to fight death. How easy it would have been to lie there and let the darkness come. Or perhaps the light, depending on your interpretation. How effortless it would have been to let my shallow breathing grow thinner and thinner until there was none left. But I felt that my business here wasn’t finished, so I willed my vision to clear long enough to text a friend, who also lived in my building, and ask them to drive me to the hospital. When I fell into an open box on the way to open the door for them, “drive me to the hospital” became “call an ambulance”. I slurred together instructions for what I would need to take with me to the hospital, where I would doubtlessly be admitted for a while.

About two weeks and another course of antibiotics later, I was feeling pretty decent and was discharged back to my apartment, where I lived alone. Slowly but surely, I returned to the rhythms of daily life. I washed my dishes, I cleaned my filthy apartment which hadn’t been touched in the two weeks I was gone. Anytime I felt the slightest hint of dizziness, I panicked, wondering if my symptoms were returning. I never wanted to experience anything like that night ever again. The funny thing is, as a chronically ill person, that wasn’t my first brush with death. It wasn’t even the first time my systolic blood pressure dropped to 60. But something about this encounter felt so visceral and so manual and so personal, I was traumatized. Somehow I scraped together the energy to finish the semester, finishing quite literally two months of homework and final exams in less than a week.

Having made it past one enormous obstacle, I was still facing another, this one six years in the making. But the roots of the issue go back even further. In 2012, when I was a sophomore in high school, my intestines twisted upon themselves, a medical condition known as a midgut volvulus. The fix for this was to resect some small bowel and create an ileostomy. However, my system was getting pretty close to toxic shock from the waste that couldn’t pass, so once the surgery was done it took two months in the hospital for me to recover. At the end of that year, they reversed the ileostomy and all was well…until it wasn’t. A few years later in 2015, the spring of my freshman year of college, my worst nightmare came true. Midgut volvulus, round two. The fix was much the same, resecting some bowel, creating an ileostomy, one month in the hospital this time. By then, so much of my small bowel had been cut away that my body couldn’t nourish itself without the help of parenteral nutrition through an IV. My gastroenterologist pushed for ileostomy reversal as soon as possible to get back use of as much vital intestine as we could, but after going through reversal once just to have another volvulus, I couldn’t bring myself to do it. I went on for four more years infusing parenteral nutrition multiple nights a week, taking calls from my pharmacist weekly to organize deliveries of the refrigerated nutrition bags, scheduling weekly nurse visits to my dorm to draw blood for the lab, and simultaneously living the life of a college student. In 2019, as I was preparing to move to Nashville for a Master’s program, I met a surgeon who would change everything.

Initially, I met with Dr. J just to ask about an issue I was having with my ileostomy. Once he was familiar with my case, he immediately recommended ileostomy reversal, which wasn’t even on my radar at that point. I had firmly decided, or so I thought, that I wouldn’t reverse the ileostomy this time. But a lifetime of parenteral nutrition isn’t ideal, and my liver was essentially a ticking time bomb as long as I remained on it. He seemed to listen to me and really understand what I had going on, and I just got an indescribably good feeling. Things like this are why I remain highly spiritual, despite being a scientist, which some people think is incompatible with spirituality for some reason. But what else am I supposed to do when I just feel a feeling? I rode the wave as far as it would go, and told Dr. J that when my Master’s program was over, I’d come back to Dallas so he could operate. “I want to take care of you” is what he said as he left the room, making it clear he wanted to be the one to perform the surgery. We all felt good about it, and I left the office knowing I’d be up for an adventure in two years’ time.

This past summer, I finished my Master’s program. I emailed Dr. J to make sure we were still on for the operation, and we were, so I booked my flight back to Dallas and prepared for everything to change. I couldn’t really process or internalize all the things that were about to be different. I had been through an ileostomy reversal once before, but everything about this felt different. It felt final. Like it was all going to work this time, and I was going to get my life back. I had built an identity around being chronically ill, and constantly compromising with my body to balance its health with my happiness. I had the overwhelming feeling that God or whatever is out there was telling me I had done my time, and this time would be for good. “This is risky” Dr. J reminded me. “You could die!” he said to my Mom over the phone. But I knew I wasn’t getting any younger, and my liver was only going to get angrier the longer I did those infusions. My job was essentially to go to sleep, and will my body to do everything in its power to wake up. June 25th was the big day. The fact that you’re reading my words obviously means that I indeed woke up in the recovery room. But the journey to discharge wasn’t so straightforward. If you haven’t guessed, good fortune doesn’t usually befall me.

Ideally in the days following the ileostomy reversal, I would progressively eat more and more, allowing my newly reattached colon to acclimate itself to having food pass through it. But I felt extreme discomfort and pain every time I ate, and a distinct tickle in my lower abdomen. After some more imaging, we learned that I had a little pinhole sized leak in my colon. Back to the operating room I went, and imagine my shock when I awoke with a freshly placed chest tube. When I was no longer groggy, my mom explained that there was some fluid found near my lung, and that was the reason for the tube. I mentally adjusted, always one to do my best to go with the flow, and accepted that I’d be in the hospital a little longer. The day came to remove my chest tube, and I got one more little surprise.

After chest tube removal, I got up to go to the restroom, and while I was in there, I felt a peculiar rattling within after a deep breath. Walking back to bed, I felt shaky and uneven, and struggled to catch my breath. It was early morning, and my day nurse popped in to introduce herself. I told her I was struggling to breathe, and she gave me a nasal cannula with flowing oxygen. I thought I knew what was going on, but we would need an x-ray to check. Fortunately, the people I needed to see waltzed into my room as I was next in their rounds. Before they could say a word, I told the team of surgeons that I was struggling to catch my breath, and a chest x-ray was ordered immediately. Shortly thereafter, I was proven correct. My old friend pneumothorax had come to visit. It wasn’t my first collapsed lung, but it was no less terrifying than the last one. A surgeon swiftly came in to install another chest tube, this time to get rid of the air in my pleural space rather than fluid. At this point I had to giggle internally, partially at my own misfortune and partially because I was conversing with the surgeon whilst she plunged a needle into my chest. She numbed it really well though! And the hydromorphone certainly didn’t hurt either.

Finally, chest tube: the sequel was removed, and after three weeks in the hospital, I was discharged. I was free of all parenteral nutrition, and for the first time in six years I had no intravenous access. No ileostomy pouch. I was no longer bound to weekly pharmacy deliveries. No longer limited in the duration of my travel by storage of a refrigerated infusion therapy. I felt more free than ever, but I was conflicted. I had spent years getting used to all the limitations that had been placed upon me. I built an identity around them, because so much of my life was altered by their existence. I didn’t really know who I was without those limitations. For the decade or so since my first midgut volvulus in 2012, my entire life has been in flux. My weight, my medications, my nutrition, my lab work, my physical health, my mental health, everything about me has been constantly shifting. It was all I could do to just live, never thrive. It was all I had the energy for. Suddenly I was being faced with the reality of the most stability I had known in a decade.

Things aren’t stable yet though, don’t be fooled.

With my flight back to Nashville booked, I soaked up my last few weeks with my parents in Dallas. A week before my flight, I woke up with a swollen and pained left leg. Hoping it was nothing serious, while deep down knowing how these things typically go with luck like mine, I elevated the leg in hopes that the swelling would go away. It did, but to my chagrin the pain didn’t go with it. I recognized the symptoms, and told my Mom we should go to the ER to get an ultrasound in case I had a deep vein thrombosis (DVT) blood clot. I had had one before, a year and a half ago, in my right arm. One ultrasound later, I had confirmation of a large blood clot in my left leg. Just as the ER nurse was about to start an IV to prepare for admission, Dr. J, who had apparently been watching my chart, intervened. He also knew that bad luck made me its friend, so he didn’t want to take any chances with procedures or anything else. At his request, they sent me home with a prescription for blood thinners. For the past two weeks I’ve been slowly recovering from the clot, and I’ve rebooked my flight back to Nashville for two weeks from now. As I said, I do my best to go with the flow, but even I get frustrated sometimes. I’ve been pretty quiet these past two weeks, just thinking, sending emails. It feels like I’ve been to hell and back and the hits just keep coming. Just to upgrade my recovery to challenge mode, my brother (who is a teenager and hence lives here at my parents’ house) tested positive for COVID last week, so I’ve been dodging a virus on top of…*gestures wildly*. Fortunately I tested negative, but the anxiety is real nonetheless.

So as far as my body goes, I’ve got a blood clot. I’m going to be on blood thinners for a while. But things aren’t really settled in my mind yet either.

My relationship to food is still in flux. In the past, I’ve been unable to eat food for periods as long as six months. I’ve been assigned diets with low sugar, I’ve been assigned diets with high fat. Low fiber, high sodium. Parenteral nutrition, tube feeding. Food is one of my greatest pleasures just as much as it is one of my most important chores. Eating is a joy, eating is an assignment, eating is intentional, eating is survival, eating is work. Over time I’ve come to learn that there are few things I hate more than unsolicited opinions regarding my diet. The volume, the contents, it all has a purpose whether your realize it or not. I’ve learned to keep my mouth shut because this could also be true of anyone on Earth.

My relationship to my body is still in flux. I’ve been 99 pounds and I’ve been 150 pounds. I expect to lose some weight here and there and eventually gain some weight in the not-too-distant future. But not too much. No one knows exactly what weight I’ll end up. As a human, I think constantly about my body. As a chronically ill human, I think constantly about my body. With the premium the gay community places on appearance and body type, thereby awarding social currency, I think constantly about my body. But the greatest gift and the greatest curse ever given to me by chronic illness is lack of control. My weight and body type will forever be dictated by nutrition absorbed by my intestines, of which I only have so much left. I’m always going to be thin, generally, and there’s nothing I can do about it. It is purposeless for me to desire that my body be anything other than what it is, so while I feel limited, I also feel free. Free to recognize my body for the wonder that it is, all that it has been through, and the incredible work that it does to keep me alive. Free from the pressure to conform to a standard, because I couldn’t even do it if I wanted to. Nevertheless I’m human, and I find myself staring in the mirror, sometimes satisfied and often not, but always knowing the reflection that I see is beyond my control for better or worse.

My relationship to others is still in flux. Prior to this summer’s surgery, I had essentially tossed the idea of non-platonic interaction in the garbage. I had no desire to think about dating or sex. There was too much explaining, too much apologizing for simply existing as chronically ill. I was tired of justifying my existence. Since surgery, and the subsequent quality of life increase, suddenly interactions that supercede the platonic no longer seem so far-fetched. With no ileostomy pouch and no intravenous access, there would be nothing to explain except for my scars. And I actually feel terrible about that. What of those for whom ileostomy reversal isn’t an option? They can’t wait for surgery to put themselves out there. Was I not tacitly implying that they couldn’t be desired as they are? Was my hiding an act of cowardice? Was I not brave enough or strong enough? Or worse, had I internalized ableism and the rejection I assumed would come from others was a projection of my own self-loathing? I try to avoid the word “normal” as it posits able bodies as the default, but I can’t help but feel that secretly it’s what I was waiting for. I could get back to interactions beyond the platonic when I had a “normal” body again, one that would require no apologies and no disclaimers. This isn’t the type of attitude I stand for and it’s not something I’m proud of, but all I can be is honest with myself.

That said, my relationship to myself is still in flux. I’m still a little lost without the markers of my identity for the past six years. The brief period between my first and second midgut volvuli was the most peaceful time of the last decade, and I know now that it wasn’t true peace, just the eye of the storm. So I’m not quite sure who to be now that I feel I’ve closed that chapter and moved on. Age 15–24 was a time of enormous change. Beyond medical things, I went through most of high school, all of undergrad, and a Master’s program in that time. I moved from Dallas, to Houston, to Nashville. Now it feels as though I’ve stopped running and paused to take my first breath in 10 years, and I don’t know where to go from here. I have a whole life to figure it out, I suppose.

The one thing that hasn’t changed, is that I am still, at 25, fundamentally the same entity. All my memories are my memories. My brain is my brain, even if it’s racing a mile a minute. My guts are my guts, as much as they’ve been put through. My blood is my blood, even if I’ve had a few transfusions and a couple clots. The Me who is greater than the sum of his parts has gotten me this far, and that’s what I’ve got to grip with all of my strength while everything around and within me continues to shift. As it should! Lest we forget I’m only 25.