Something is wrong with me. I have written it about it in several first drafts, but I haven’t wanted to publish anything here without a concrete diagnosis. But finding a diagnosis is taking much longer than expected. I’ve encountered several dead ends already. And I keep hearing portions of this essay that want to be written. It’s in writing that I organize my thoughts.
Of course, a lot of things are wrong with me, as I explored in the essay “On Oversharing.” But either something has escalated, or some new element has been discovered. I’ve lost a lot of functioning. I’m debilitated in a way that I wasn’t before. I’ve always struggled with certain ailments, but I’ve lost my ability to bounce back.
I’m not sure where to start, but I keep saying that nothing was the same after I got Covid. I think this is true, but I also know that I’ve been wrong before. Most recently, I was convinced that I had the same heart defect as my sister. She was diagnosed a little over a year ago. She has CPVT, a condition where the heart beats too quickly because of issues with the electrical current. Like me, my sister has dealt with certain symptoms her entire life, and like me, they came to a climax in the past year. It took her a while for the doctors to figure out what was wrong. Her first diagnosis was for a different heart defect. This misdiagnosis led to a complication with her pacemaker. After implantation, the pacemaker shocked my little sister and she passed out. Upon further examination, they figured out the actual heart defect and put her on beta blockers. She’s been in and out of the hospital several times now, but she’s been fighting the good fight with determination and a developed sense of Jewish humor. After the pacemaker was put in, we started a bit saying that she was now a bionic woman. She joked about wanting superpowers. I’m proud of her, and I think of her when I start gaslighting myself. For years we all treated my sister like she was a hypochondriac, like she was just too anxious or sensitive, maybe even exaggerating. That was wrong. She had a heart defect, one she wouldn’t discover until she was twenty-five, one that has almost killed her several times now.
CPVT is hereditary. Immediate family members have a fifty percent chance of sharing it. The genetic counselor I spoke to was especially worried about me because of symptoms that have been present my entire life, namely: fatigue, dizziness, nausea, and palpitations. These symptoms have come and gone in different intervals and with different intensities, but they are present in my memory stretching back to early childhood. Before I received the results of my genetic test, the counselor told me that she would be surprised if I didn’t have it. She told me it was imperative that I cut down on stress and exertion. At the time, I worked at both the front desk of a massage boutique and a restaurant. At the restaurant, I was a runner. That job is all stress and exertion. You move nonstop. When I told the genetic counselor this, she said, “I can’t tell you to quit your job, but I must stress that you should cut down on stress and exertion.”
I was trying to be a hero and power through my shifts until the results of my genetic test came in, but I noticed things getting harder. I got dizzy and dehydrated more easily. I kept running into the walk-in to avoid passing out. I lost my breath more quickly and couldn’t regain it like I once had. Exercise spurred palpitations. And on my days off, I could do little more than lie around.
My last day at the restaurant was a Sunday. The restaurant in question is closed on Mondays and Tuesdays, so Sundays are more akin to Fridays. I told myself that if I could just get through the Sunday shift, I would have two days to recuperate. But that Sunday morning I threw up. To be fair, I have thrown up quite a bit in my life, as I’ve always had a sensitive stomach. In college, most of the time I threw up, it was because I drank too much. But after I moved to LA, I started throwing up even when I didn’t drink and even on an empty stomach. It had never happened like that before, with all the dry heaving and green bile. Very sexy, I know.
The morning of my last shift at the restaurant, I threw up in my bathroom at home, and then went to work anyway. Green bile upheaving has been a constant during these past six and a half years, usually correlated to stress. That’s how I justified it to myself, at least. If I had called out of work every time I threw up green bile, I wouldn’t have worked very much. Also, my fear of authority means that every call out makes me nervous. The fear is not all unjustified. I’ve seen people dropped at several workplaces now for calling out too often, sometimes even when they had notes from their doctors.
My last restaurant was always kind about call outs. Not all of my jobs have been. My second year in LA, I worked at a pizza place for three months. It was an awful situation, the burn-out class of restaurants. One day I told my manager that I had a bad cold. I was coughing and hacking. The manager told me to come in regardless and wear a mask. When he saw me in person all red, puffy, and dripping, he said, “Wow, you really are sick.” But he didn’t send me home. I got the next day off instead. At the restaurant I worked at just before the pandemic, people got roasted for calling out, especially the cooks. Some coworkers bragged about working with fevers to show their dedication. That whole place had a military vibe. Push on through. Stand at attention. Don’t let down the platoon.
I’ve absorbed a lot of that ethos. I feel guilty when I stay home from work. It’s also hard to explain chronic things. When I tell people about the green bile, professionals and laypeople alike, they look at me like I’m crazy. Why did I normalize it? Why didn’t I go to the doctor sooner? I’ve been wondering that a lot myself. I used to get more defensive, but now I’m wondering it in more earnest. The honest answer is simply that I was overwhelmed. I was picking my battles. And it’s easy to explain away things as stress. And I have been stressed. Very stressed. I thought that figuring out my mental health would unlock the rest of it. And to be fair, the green bile sessions didn’t used to be this frequent. It was more of a periodic thing that I could write off as temporary disruption. I felt better once I got the bile out, and the nausea would dissipate. Whatever digestive monster lived within, it would be placated by the ritual until the next bout, which was less frequent back then.
My last day at my last restaurant, I was scheduled for the set-up shift. I have completed many shifts feeling less than superb health-wise, but this time it was more pronounced. I couldn’t stay on my feet. I kept running into the bathroom just to sit down. I felt that I might throw up again. On the last bathroom visit, I fell to my knees on the hard concrete floor. The room was spinning. The bathroom held heat like a sauna. I was on the verge of passing out. I pulled myself up to the counter and splashed water on my face. I looked in the mirror and heard a singular thought:
It will be really embarrassing if I die here.
I did not want to go out like some undiscovered Elvis. I did not want to die in a bathroom, especially not the bathroom of my depressing restaurant job, the punchline to that age-old set-up: “A postgrad walks into LA to become an artist…” I made the judgment call and told my manager that I had vomited.
“Oh, okay,” my manager asked, clearly disturbed. “Why do you think that happened?”
“I have a lot of digestive problems,” I said. “My doctor and I have been trying to figure it out.”
I did not mention CPVT. It was too much to explain.
“Okay,” he said in a tone of corporate concern, the cautious kind composed of one-part logistics and one-part concern for liability. “Why don’t you take a thirty, sip some water, and we’ll see if we can get you back on the floor? But if you don’t feel up for it, I’ll totally understand.”
This manager is not a bad guy. In fact, I think he’s a pretty good one. I always enjoyed working with him, but more so before he was promoted to manager. Back then we could talk shit more easily. You don’t get through shitty jobs without talking shit. It’s part of maintaining sanity. This coworker in question was candid in the best way. On his first day I was showing him the layout, and amid introductory conversation, I asked him something corny like “What’s your dream?”
“Honestly, I just don’t want to work,” he replied with a shrug.
I respected him so much in that moment. It wasn’t a confession. He said it, he meant it, and if I didn’t like it, then I could shove off. And I didn’t like that kind of honesty. I loved it. That’s why I found it heartbreaking to hear him reduced to manager-speak, the diluted dialogue of one who must represent the business. We were in the middle of a busy brunch shift. Losing a runner would make things harder on everybody else. It all made sense from a managerial perspective. But still…
I took him up on the offer. I grabbed a cup of water, sat behind a vine-covered wall where the customers couldn’t see me, and sipped. My head still hurt, I was still dizzy, and I still felt that I might throw up again at any moment. Another singular thought came to me.
Fuck this.
I told my manager that I wasn’t going to make it. He reiterated that he totally understood. And I knew that he did because I remember how we talked before he was promoted.
After a day or so of lying around, things had not improved much. The thought of going back to the restaurant inspired real fear. I kept hearing what my sister and the genetic counselor had told me: most people find out they have CPVT by going into cardiac arrest. I wondered how many of my panic attacks had been near-death experiences. I sent in a resignation email and told management everything. I even uploaded the notes from my genetic counseling session. Management took it very well. They dropped my shifts without making me find coverage. They wished me the best and sounded heartfelt.
When the results of my genetic test came back negative, I was stunned. I didn’t know what to feel. I didn’t want a heart defect, but I did want to know what was wrong with me, and I wanted to know that it wasn’t in my head. I also second-guessed leaving the restaurant, which paid approximately double what the massage place did due to the dark magic of tips.
But when I went to a cardiologist to confirm that my heart was ticking just fine, he found a murmur with nothing but his stethoscope. I have had many stethoscopes placed on me throughout the years. This is the first time that any professional has found something out of the ordinary.
I told him about these dizzy spells I used to have all the time as a kid. They would happen in the morning when I got out of bed. I would have to lie down immediately and wait for them to pass. I told him about all the shifts I powered through feeling lightheaded. I told him about the time I had gone to the ER four years earlier because I almost passed out at a different restaurant job. But like I said before, it’s easy to blame stress for mystery symptoms like these, especially when doctors keep giving you clean bills of health. I was always told that I had a strong heartbeat. I took pride in it until I learned about CPVT and the possibility that it might be beating too fast.
“Do you think it’s serious?” I asked the cardiologist in reference to the murmur.
He looked at me like I was ridiculous.
“I don’t know,” he said. “I just met you. And you’re telling me that you’ve had these symptoms your whole life.”
I sputtered an explanation like the one I keep offering in this essay: I thought it was stress, they said my heartbeat was strong, my vitals were good, the blood work always came back fine, I thought—
“Don’t worry,” he said, cutting me off. “We’ll figure it out. Make an appointment with the nurse for your ultrasound and holter monitor.”
But they didn’t have an opening for three months, and both procedures had to be conducted in separate appointments, ditto for discussing the results. I had three months of mystery ahead of me. This was after three weeks of mystery waiting for my genetic test.
Many murmurs are benign. Lots of people have them. But dizziness is a bad sign. So is getting out of breath. And I have a sister who needed a pacemaker at twenty-five. I had dodged CPVT somehow, but there are many other defects out there.
I left the cardiologist’s office, wandered into a side street, and cried. Then I walked to the grocery store and got some shopping done.
I powered through the front desk job until a week ago. Last Monday was my last day. It was still a struggle, but less than the restaurant. When I got dizzy, I could sit down. But I still had next to no appetite and battled nausea throughout the day. The last week was a crazy one. In addition to working, I was pet/housesitting while also moving out from the spot I had lived in for over four years. At the same time, there was drama between my two roommates. Things were cordial, but tensions were high, and I was not totally removed from the conflict. If anything, I was the catalyst because I had leaked information without realizing it. My workplace was also going through exit pains. Tensions between management and the employees had reached a boiling point. One coworker gave her notice, and HR responded to that email saying she was fired instead. Three people quit a few days later in solidarity and didn’t serve out their last two weeks. Only two employees showed up to the team meeting, and one of them was a new hire.
I left the massage boutique on good terms, but I was glad to be gone. The dysfunction was palpable. And the wages were too paltry to even think about staying on, especially given the longer commute from my new spot. I love a workers’ rebellion as much as the next millennial, but at that time I just wanted to move into my new place, resume my search for a remote job, and rest.
And here I am. For the moment, there is no workplace drama. There is no move out stress. There are no roommate conflicts. There is me, myself, and I. I have a space all my own, small but stocked with solitude. It is time to figure things out. Figuring things out is hard, but the plan seemed straightforward:
Step One: move into monthly spot.
Step Two: develop super healthy regimen to rehabilitate body.
Step Three: secure remote job.
Step Four: secure long-term lease (I have the spot picked out, but they need proof of income).
Step Five: make it to scheduled appointments with specialists and figure out the mystery illness once and for all.
Step Six: fix or manage said mystery illness with medication or a procedure.
Step Seven: live the Good Life.
I feel that I’m missing something. Something obvious. Right in front of my face. Maybe it’s something about my health. Maybe things really will never be the same. Maybe I’m just like this now: exhausted from the least little task, dizzy all the time, barely hungry, and barely eating. I can’t lift weights. I’ve lifted weights since I was fourteen. It’s been part of my skinny-kid transformation fantasy for fifteen years now. Fifteen. I’m trying yoga, which does help, but I’ve lost so much weight. The other day I was below 130 for the first time since my teenage years. I’ve always struggled to gain weight, but I at least stayed above 130 since turning nineteen. This past year, in fact, I completed a rigorous bulking program. At my peak, I had gained twelve pounds. When I stopped lifting because of dizziness and palpitations, I lost it all. It only took several weeks for a year’s worth of work to melt away, but I’m hoping muscle memory will be there if I can lift weights again. I am concerned, though, every time I step on the scale. For the past week or so, I’ve been around 128. 128 is a prehistoric weight. B.C.E. Before Childhood Ended. Emphasizing my weight loss finally convinced my doctor to give me the referral to a G.I. specialist that I had been asking for. It took three separate appointments at her office over the course of a month, but I got it. The wait for an appointment is shorter than the cardiologist, but still not great. I can’t get in before July, and the first appointment is always just a consultation.
I’m trying not to freak out. I’m trying to take this as an opportunity to prioritize health. To take a step back from the life I was settling for. I keep hoping that my underemployed days are finally behind me. I’ve seen friends make the transition, and remote work seems to jive better with their creative pursuits. It seems more flexible than the shift life in many ways. Remote work is more widespread now because of the pandemic, and I’m trying to be excited about that.
But I can’t do many of the things I once did. And that scares me. It’s strange: my brain feels foggy and sharp in different intervals. Getting into a creative flow state has never been easier, but focusing on basic tasks is an ordeal. That’s why I’ve been writing so many essays. It’s hard not to. The words keep buzzing around my skull. It’s hard to stop writing once I start. I have all these things I want to say, but I don’t know how much time I have to say them. I really thought I might be dying when CPVT was a looming diagnosis. I thought I might have to get a pacemaker. I thought I might end up in the hospital like my sister.
I don’t have CPVT, but something is clearly wrong with me, especially where it concerns fatigue. I had hoped things would improve once I got off Zoloft, and they did, but it didn’t fix things. I feel at any moment I might fall asleep and never wake up. The tiredness is a force of its own. I hold it back like the wood buttresses on shorelines meant to postpone erosion. But the ocean is tireless, and these days, so is my tiredness.
Or maybe I’ll find out that I just need to cut out gluten and everything will be fine within a week. Something like that. I don’t know. I get a range of responses when I talk about my mystery illness(es). Many people offer similar stories of themselves or loves ones. It doesn’t seem so uncommon these days. In fact, it seems like every other person has some disorder. Is it processed food? Dirty air? Tainted water? What is the correct health scare boogeyman in this situation? Or am I imagining things? Maybe the range of disorders has always been this prevalent in the population, and we just understand health better now. Bodies tend toward entropy, after all.
The more I read about it, the more I think that I might have long-covid, the current mystery illness of the hour, but the inability to test for it makes everything suspect. There’s so much they still don’t know about the condition, but from what I’ve read, the numbers are disturbing. Also, the timing of my symptoms matches up, and so do many of the symptoms themselves. It would make a lot of sense. Like I said, nothing was the same after Covid. I could never get back to one hundred percent. These past couple of years, I have felt functionally sick. I have pushed through symptoms until I could not push anymore. And this is the moment I’ve pushed on through to. I have a room of my own. I can rest. But I also must figure out what comes next.
I am in one of life’s paused moments. I do not have a new job yet. I have not signed a lease yet. I have not been diagnosed yet. Life could go in many different directions. It’s both exciting and frightening. One second, I’m optimistic, the next I’m debating what I want inscribed on my urn. That is, if I have an urn. I always thought that procedure where they use your ashes to grow a tree was super cool. They use a biodegradable egg-shaped pod. How sci-fi. The weeping willow is my favorite tree, by the way. Maybe the headstone could be inscribed into the trunk. Maybe they could carve my face on the side like that spirit tree lady in Pocahontas. Maybe—
Alright, Boz. Let’s not get crazy.
It's funny. I look back on the two times I had Covid with fondness. The first time was at the beginning of the lockdown. At least, I think it was. I couldn’t get tested due to the shortage of kits, but it was an identical experience to the time I contracted Omicron. Both experiences lasted two weeks and exhibited the same symptoms.
In both instances, I felt at peace. The first time was at the beginning of the lockdown. I had just been laid off from a job that made me miserable. Then it rained for two weeks, a minor miracle in the City of Angels. I love rainy days. I was lucky to keep my sense of taste and smell, and ironically, I had a good appetite. I spent two weeks in bed listening to the rain, reading, and watching TV. There was no pressure. At least if I die, I told myself, I don’t have to go back to work. I didn’t know then how long the pandemic would last. I didn’t know that my workplace would stay closed indefinitely.
I contracted Omicron right before Christmas. I was lucky once again to keep my sense of taste and smell. My restaurant (a new one that hired me a year into the pandemic) was closed for the holidays, so I didn’t have to worry about coverage. My roommates were gone, and I had the house to myself. I used my hour ration of energy each day to get the place clean (this was a constant battle when the house was full) and then I did little more than eat, sleep, read, and watch TV. I gave myself permission to get incredibly high. On Christmas Eve, I watched Eyes Wide Shut, and it was a mind-opening experience. Maybe it was just the THC talking, but at the time, I thought it might have been the greatest movie ever made. At that point I was vaccinated, and Omicron was known to be milder, but I still told myself that if the worst occurred and I died, at least I wouldn’t have to go back to work.
I do keep looking for the upsides. After my session with the genetic counselor, the one where she all but told me that I had CPVT, my reactions went in this order:
1. Wordless panic. The world closing in on me.
2. A thought: does this mean I don’t have to work anymore?
3. Another thought: does this mean people will have to stop bombarding me with advice?
4. A thought most cringey: does this mean I might qualify for the Make-A-Wish Foundation?
At that point I cut myself off.
Several people have suggested that I collect temporary disability, but I believe you need a diagnosis for that. You need a doctor to sign off on it. Also, as mentioned before, I keep gaslighting myself: maybe it’s in my head, maybe it’s something mild, maybe I just need to make healthier choices, maybe the symptoms will clear up on their own. Maybe…
It’s in these moments that I remind myself of my sister, of the heart defect she would not learn about until she was twenty-five, a heart defect that has almost killed her several times now.
I wrote all the previous paragraphs of this essay in one sitting. I stopped because it was time for my ultrasound appointment. Concerned by worsening symptoms, I had called the cardiologist’s office about cancellations to try and get in earlier. By some stroke of fortune, a slot had opened.
This was my first ultrasound. I had only seen it in the movies. The technician was friendly. His name was Billy and we talked about lifting weights. He and I have opposite problems. He gains weight too easily, and I can barely gain anything. As the procedure went on, I noticed Billy getting more agitated, and this made me nervous. At the end, he told me that he needed to ask the doctor to confirm something, but the doctor was not in yet. Billy assured me that when the doctor did arrive, he would have him look over the videos from the ultrasound, and someone would call me. If I didn’t hear anything by 3:30, I was supposed to call the office myself.
Before I left the office, I snagged the bathroom key from the receptionist, retreated into the stall, and had a quick cry. Then I relieved myself, returned the key, and began the journey home.
I didn’t hear anything by 3:00, so I made the call. The doctor had not come in. Someone would call me on Monday. I hung up and swore, frustrated to hang in suspense for the whole weekend. But around 7:00, the doctor called himself. His tone was different from the first visit. He spoke softly. His delivery was kind and steady.
He told me that the ultrasound revealed my heart was weaker than it should be.
I felt many things at once. I had imagined this moment, a doctor telling me the hard news, many times over. Because of that, I had to keep reminding myself that I was not imagining the phone call. It was real this time. The cardiologist and I discussed the possibility that Covid had caused heart damage. The virus can infect the heart in some cases, he said. In any case, the cardiologist was referring me to an electrophysiologist. I would get a call the next week. If my symptoms worsened, he advised that I go to the emergency room.
I thanked him several times. He spoke to me with such tenderness and care. I felt guilty for roasting him to my friends after that first frustrating appointment. I reminded myself of how hard the pandemic has been on healthcare workers, of how they must be more burnt out than anyone.
It turns out I was right to quit the restaurant. It turns out that I am not a hypochondriac. It turns out that I am more like my sister than I thought. My heart is not working as it should be.
The mystery continues, my dear Watson. I still don’t have a diagnosis, but I do have a lead in the case. There’s a primary suspect now: the underperforming heart. How guilty that heart is, and whether it has accomplices, I don’t know yet.
There will be more appointments and tests. There will be more waiting and wondering. There will be more efforts to get the body up and make it do healthy things. I’ll keep crying now and then to keep the eyes irrigated. I’ll work it into the schedule. I’ll make dumb jokes. People will have to indulge them because I might have something serious. I’ll act all brave and stoic while fishing a little for sympathy. I never believe people when they describe some sad thing and then say that they don’t want pity. I want pity, just in proper portions. Pity is part of a balanced diet, after all, just like red meat. One palm-sized patty a week, that’s what the experts recommend.
I keep thinking all sorts of dramatic things, the same things I thought when I believed that I had CPVT, the same things I thought these past few weeks as I grew dizzier and more fatigued. The main thought is a classic for near-death dramatics: I’m not ready. I have so many things I still want to do. I have so many things I still need to make. I have so many stories I still need to tell. I was supposed to get rich/famous and have sex with lots of beautiful women, Entourage told me so. Then I was supposed to clean up my bachelor act and fall in love, the rom-coms told me so. I was supposed to travel all over the world, but especially to Venice. I’ve idealized Venice since I was a kid. Overall, I was supposed to stop being a sad little man at some point and start living the Good Life. I told myself so.
When I imagine going on a rant like this for real, I remind myself that Joseph Gordon-Levitt beat me to it in the movie 50/50. And his character has straight-up cancer. Cancer trumps underperforming heart, I think, especially since I don’t know the long-term implications yet.
But come to think of it, I never confirmed whether I qualify for the Make-A-Wish Foundation. I should also reiterate that the weeping willow is my favorite tree, and if someone did want to carve my face on the side…
Laugh, and the world laughs with you. Cry, and you walk to the grocery store alone. I’ve spent a half hour trying to think of something pithy and that’s the best thing I came up with. Oy vey.
Here’s another thing I remind myself: the dramatic thoughts are presumptuous. At this point, nothing is known for sure. The mystery continues. There is nowhere to go but forward. There is nothing to do but hope.