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A Year Ago Today, I Almost Died *(originally posted - November 19th, 2019)

on trying not to hate my body, which nearly killed me. TW: health, bodies, death, sickness, anxiety.

Okay, maybe I didn’t almost die. It’s impossible to know for sure, but the gravity of the situation with my health was reflected clearly on the faces of every healthcare professional I spoke with, both when I was initially hospitalized, and during this past year when I’ve gone in for constant tests, check-ups, and other routine visits.

There’s a type of sudden heaviness that settles into the faces of people after I tell them about my diagnosis. When I was told I had two pulmonary emboli in my lungs, another in my right leg, the news was broken to me matter of factly, downright absent-mindedly, but in a hushed whisper, barely audible over the beeps, boops, and busy noises of the dark and cramped ER room where I was lying on an uncomfortable gurney. Before learning what was going on, I had convinced myself I had wasted everyone’s time going to the emergency department. After the nurse gave me the news, following a series of tests, she solemnly nodded her head. “It’s good that you came in,” she said. All I could think to say was, “yes, I guess you’re right.”

Whenever I tell doctors and nurses about the blood clots since I was released from the hospital (and I’ve spoken to several in the past year) their eyes involuntarily go wide, if only for a moment. Once, after visiting a pharmacy Urgent Care for a bad weekend cold, I told the nurse about the blood clots in my lungs. She stiffened in the same way everyone seems to when first finding out, as if their entire body is being put on a sudden, upright pause. “Are they still there?” she asked, with what sounded like cautionary wonder. All I could think to say to this was, “I certainly hope not.”

I hear the same questions constantly from people who know the typical symptoms leading up to a pulmonary embolism.

  • Had you been traveling?

  • Lots of air travel, long flights?

  • Long drives?

  • Any recent surgeries?

  • Are you fairly active?

No, I had not been traveling, save for short drives under two hours, which hadn’t occurred very regularly. No flights, either, and no surgeries. And until the weather became too cold for me to tolerate, I routinely biked back and forth to work, for a total of nearly 12 miles a day.

“You’re too young for blood clots,” is something I’d often hear. And health care professionals would ask me, in very careful, quiet tones, “is there a history of cancer in your family?”

Is there, at this point in time, anyone in the world who does not have some history of cancer in their family? How does one answer a question like that?

I would answer by saying no, not to a great extent. I would also explain that my mother’s father died when he was very young. I never met Roger. His death preceded my birth by nearly two decades, dying when he was barely only 50 years old. They always assumed it was a sudden heart attack, but perhaps it was a pulmonary embolism. He died in the 1960s, after all. Did they know to look for blood clots then? Then again, like so many people living through that decade, he was a vigorous smoker. So who knows.

When I think about my brief hospital stay, a few vivid details pop into mind:

  • The emergency department was crowded, but I received a room fairly quickly. There was a woman on a gurney in the hallway who was constantly moaning with pain, occasionally muttering something to her husband in a language that I believe was Portuguese. Her pain must have been severe and I kept wondering why they didn’t give her a room. Not that a room matters much when you’re in that much pain. Surprisingly, I wasn’t in great pain, only when I breathed deeply, which I obviously tried not to do. I wanted to tell someone she could have my room if she wanted. I mentioned something to one of my nurses, but she just waved the thought away.

  • It was nearly 2am when I received my diagnosis, after which they told told me they were going to admit me and get me a room. A room didn’t come until early Tuesday morning. I did not sleep well. Nurses kept coming into the room to change my IV, stick me with needles, test my blood sugar, or take more blood for tests. The hospital room was lonelier than the ER, which at least had reminders that other people besides medical vampires existed. The only people who visited were nurses coming for blood. Some were better at it than others. Some were pros and did it in a matter of minutes. Others were nervous and stuck me several times before getting what they came for. Despite the track marks on my hands and arms, I was thankful for them all, knowing how difficult a job that must be.

  • My daughter was too scared to visit me. My wife came, though. We were both worried I’d be hospitalized for Thanksgiving, which was two days away, the loneliest thing I could imagine. I’d been so looking forward to some time off. At the start of the fall semester, I fell into an unexpected, temporary promotion - Interim Dean of Academic Affairs at the small technical college where I’d been working for thirteen years. I started as a lowly adjunct teaching remedial writing courses. Now I was the chief academic officer, and I was placing calls about the potential of computer equipment graciously getting donated from the Harvard Business School from the non-comfort of my hospital gurney. I’d ask the doctors when they thought I’d be released. They didn’t want to make any promises. Thankfully (no pun intended) I was released a day before Thanksgiving.

  • I edited an episode of the fiction podcast I co-write, edit, and produce from my hospital bed while still in the ER. I had written myself a challenging two-part episode of Greater Boston that continuously follows one character after another through our strange, alt-universe Boston landscape, set during an important election day, and the transitions from character to character were proving difficult to convey, making the production work far more tedious than usual. My co-creator, Alexander Danner, told me not to worry about it. We can release the episode late, he said. I plowed through anyway. Doing this work kept my mind off the fact that my life could have easily ended like someone flipping a light switch.

About one third of people with undiagnosed and untreated blood clots do not survive. I never felt like I was having a heart attack or anything close to that serious. There wasn’t any great tension in my chest, except when I climbed stairs, walked quickly, or breathed deeply. At the same time, a certain dread settled over me as I tried to sleep through my first hospitalized night. I had come very close to death. I was certain of it. I’m certain of it still.

Weeks before I was admitted, I had what I thought were cold-like symptoms, something along the lines of bronchitis. I was having coughing attacks, barking-like coughs, and was getting easily winded when climbing the stairs to our third-floor walkup, which I just chalked up to being sick. On the Saturday before Thanksgiving, I woke up with a pain in my right leg. I had fallen asleep on the couch. At the time, my sleeping patterns were not the best, all thanks to the increased stress and pressure at work, channeling into bouts of insomnia. I was having a very difficult time shutting my brain off about my added responsibilities. When sleep came, it came suddenly and seemingly without warning. When I woke up with leg pain, I chalked it up to the fact that I’d slept on it funny, my feet resting on our ottoman. Or perhaps the pain was from a bad leg cramp, which I do suffer from occasionally.

When I mentioned the pain to my wife, she said, “I hope you don’t have a blood clot.” Even though her tone was somewhat droll, the seriousness of the possibility startled me. I thought about it on Sunday when my leg still hurt with the same severity of gnawing pain. On Monday, I mostly forgot, busy with work, and excited about an interview I had set up with local magazine Scout Cambridge about Greater Boston. The interview was at Diesel Cafe in Davis Square, where I do a lot of writing for the show. I went there right after work and ordered a small coffee. My heart was beating faster than usual and I chalked that up to being nervous. The interview went well, and I was proud of setting up the nice bit of press we’d receive.

But later that night, I noticed my breathing was quickening and my heart was still beating rapidly. There was a tight pain when I breathed deeply or coughed, which I was regularly doing. I almost did nothing about this. I almost decided to sleep on it. And it’s that one decision that haunts me somewhat still. I think that if I had decided to wait a day, I would have died. Possibly in my sleep, possibly not.

I’m thankful I didn’t wait, but for months after my hospitalization, I kept thinking about how sudden death was the first symptom of 25% of people with blood clots. I’d take in beautiful, banal images and wonder if they’d possibly be my last. A man hunched over a bench waiting for the T, drinking a coffee from McDonalds and checking the score in the Metro. A big gust of wind blowing dozens of leaves off of trees as I crossed Boston Common on my way to work. My daughter, jumping on the bed, getting tickled while squirming, laughing. My easy ability to still make her laugh, how it pleased me so much, pleased both of us. But then I’d think about how she’d react to me dying, suddenly, like a switch going off. She’d wonder if I was pretending. And then she’d get confused, then scared, and then probably much later, angry. And I hated that. I hated my body for failing me in this specific way, failing me by bringing me so inexplicably close to death at such a young age, failing me for forcing the possibility of death coming so quickly, without warning, without any chance to see it coming, to say goodbye.

Hating my body was nothing new for me. I’ve hated my body for as long as I could remember.

I’ve never felt comfortable in my body. This is partly because I’m clumsy, but even my clumsiness feels like an extension of something else. I am what people would call a “big guy.” I’ve always hated that expression too. I’ve never *felt* big. I’ve always felt smaller than what I physically am. On the subway or even walking down crowded streets or hallways, I will shrink and contort myself however possible to avoid getting closer to others. I used to never sit on the T, paranoid that I’d be making other passengers uncomfortable. Then I realized that by standing, I was taking up more space; a no-win situation if there ever was one for someone like me. Biking helps, but there are still rainy, wintery days when I can not bike to work. On days like that, I’m helplessly aware of the proximity of my body relative to other bodies, forcing me to assume that I’m making others uncomfortable, which in turn makes me uncomfortable. Now that I’m older and know more about myself, I realize this is a manifestation of my anxiety, but knowing it doesn’t make me feel much better about it, although I am far more comfortable sitting or even standing on the T now.

I understand that I am technically physically intimidating to others, which is, without question, absolutely laughable to me. I’ve inherited my father’s large frame, just as I’ve inherited his sudden temper, just like I’ve inherited my mother’s intense anxiety. I am large, but I hate violence, detest the thought of committing any act of it. As I’ve gotten older, my tolerance for violent images has even shrunk. As an eager, naive film nerd in my 20s, I’d link grotesque violent movie imagery with artistic merit. Now that I’m older, I understand the foolishness of that kind of thinking. Real violence has real consequences for real people. To employ violence as a tool in your work of art should be done carefully, and it takes thoughtful skill to use it as an appropriate storytelling device. That doesn’t mean I still don’t love action movies, or even some horror movies, it just means that I think about them differently now than I used to.

When I was in high school, coaches would approach me to ask me if I was interested in trying out for football. I joined the drama club instead. These men I did not know would approach me out of the blue, sometimes accompanied by a classmate I barely knew (in an attempt, I’d guess, to make it less “weird.”) I hated that they were looking at me and evaluating me solely on my size, and I hated the idea of playing football, of being judged and valued solely because my body was large, and therefore an asset to a game that involved large bodies colliding with other large bodies.

When I was a boy, I would compare my body to other boys bodies. I was bigger than them, but not by any great stretch. Still, I was self-conscious about my size, and comments from some family members encouraging me to try out for sports or routinely exercise didn’t help. “You’ll feel better if you do,” they’d say. “You’ll have more energy.” It’s possible they meant what they said and only what they said, but I always processed it in one way - “you’re too big.” And so I would resent their advice and did not take it, focusing on insular, non-athletic activities instead.

I tried out for only one sport in high school, the only sport I thought I’d enjoy playing; basketball. And I didn’t try out for it until years and years after I started hating my body, at which point my body had grown in size, but not in any way that would remain an asset to the basketball team. I was cut from try-outs after the first round. I was too slow. I could barely handle the intense running drills that prefaced every try-out. The cut did not come as a surprise and I took this news as assured proof that it made no sense for me to participate in any organized sport, or be active much at all.

During my first two years of college, I decided to try and “get in shape.” I joined my local YMCA, or used a membership I had signed up for months prior but never used. After a brief workout, I grew dizzy and nearly passed out. The city hospital was literally down the hill from the Y, but they still called an ambulance to take me less than fifty feet. Hospital doctors told me I was dehydrated and to go slow the next time I wanted to work out, not to do too much too fast. I didn’t go back to a gym for almost ten years after that, and I hated my body for putting me through that humiliation.

Throughout the rest of college, and for years later, I continued to hate my body. Despise it even. I would look in the mirror and imagine being someone else completely. I would look at strangers and imagine trying their bodies on, longing to slip into someone else and just experience life differently for a while as someone not taking up so much space, not possessing so much mass.

I acknowledge that at some point I grew used to my size, used to the invisible privileges it granted me. I would take long walks or (eventually) jog through the city late at night while listening to music. When others questioned me about whether or not this was safe, I didn’t hesitate. Why wouldn’t it be? But of course, people with smaller bodies would find this behavior far more intimidating, and this lack of foresight made me realize how much my body actually afforded me, which made me hate my body more.

As I grew older and learned more about the world, I’d find new reasons to hate my body. When I’d witness rampant, constant examples of systemic racism, especially through the lens of all the challenges my students would routinely face, I’d hate that my body was white, that because of my body, I enjoyed so many privileges others did not. I hated that my body was cis male, that it was straight, that I had the type of body that was afforded so many privileges that I actively acknowledged were real, all while hating my body at the same time, hating it all the more because it gave me so much benefit in the world compared to others.

I hated my body for my poor metabolism. I hated my body as I lost my hair and went bald, needing to weekly shave my head in order to not look like some kind of giant Koala. I hated my body when I discovered I couldn’t really grow any facial hair, so that my options for any kind of style were severely limited. Last week, a colleague remarked that he assumed I was politically conservative based on my appearance. And so I hate my body that it gave him an impression of me I certainly do not want to give to anyone.

And this past year, I’ve hated my body for nearly killing me with those pulmonary emboli, and for getting constantly sick in the aftermath of my diagnosis. Since I was hospitalized, and roughly on a monthly average, I’ve been experiencing a bizarre set of symptoms, including severe fatigue, cold, lightheadedness, rapid heart beat, rapid breathing, and sudden headaches. All I can do when these symptoms hit is wrap myself in whatever clothes or blankets are available and shudder through them until I’m eventually so tired, I pass out. People have asked if these are panic attacks. No, thanks to my anxiety, I know what panic attacks are like. These are far more physiological and they always follow the same set of physical symptoms.

Until quite recently (last week, in fact), whenever I’d asked doctors or other healthcare professionals about these symptoms, they’d react with confused calm. They never seemed alarmed, despite the fact that I desperately wanted to know what was going on. I felt that these symptoms had to be traced back to my diagnosis. They felt and still feel otherwise, and even though now there is a possibility we have it figured out now, I remain skeptical. Because it’s my body and my body has routinely let me down.

And if you’re actually still reading at this point, you might be hoping for a turnaround of some sort, a triumphant realization that I do not, in fact, hate my body, that I’ve learned something this past year about valuing the life I have left to life, my body be damned, well - it’s a bit more complicated than that.

Our bodies eventually fail us all, every one of us will one day die, so it makes little sense for me to waste time hating something that is designed to one day fail. It’s arrogant to assume our bodies will carry us into old age. Plenty don’t. What makes your body special, after all? What makes mine the antithesis of special? I’ve had friends who have died far younger than my current age. Matt, ten years ago now, of brain cancer. Shreyas, just last year, tragically falling off a cliff while hiking. Maybe since we’re all destined to share the same fate, there’s something wonderfully human about acknowledging the limitations of a life trapped inside a vessel you have such little control over, and possibly don’t even care for all that much.

I’m now forty-one years old, and I’m finally realizing that it’s not my body I dislike so much as it is my mind, or specifically, aspects of my mind that force me to believe that I can not change. Change is one of the hardest things people can do, especially someone who lives with so much fear. And I am afraid. I do have anxiety after all, which is the bedrock of most of my fears. Among them all, I’m afraid my body will fail me again, more than it has in the past. But there is so much fear beyond that.

For years I’ve felt like a person trapped inside myself. When I’m quiet in conversation around people I barely know, I long to make some kind of connection. I want to be visible, viable, the life of the party, an essential part of the room, someone people remember. But my anxiety pushes me to be inconsequential, it pushes me to make others more comfortable at the expense of vitality, pushes me to be forgettable even. Last year at a work retreat, when I confessed that I suffered from anxiety, people reacted with surprise. “I always find your presence very calming,” my supervisor told me, a slight lilt in his voice, as if he was telling me something that would shock me. My thoughts in response? No, of course you do. That’s by design. If I could find a way to communicate what I need to communicate without interrupting you at all, I would. But that’s not how communication works. So when I communicate, I will do it in the last intrusive way possible.

But I nearly died, and I do want to live, I want to live as much as I can while I still can! I don’t want to contort my body into unobtrusive positions in unsuspecting corners anymore. I want to go places and see things and scream into the night until I hear my voice echoing against the stars. I want to experience things at the expense of pushing my body past the point it previously deemed obnoxious. I don’t want to be a burden, I don’t want to be a problem, I don’t want to make people uncomfortable. Never, that. Never. But I also don’t want to feel so shackled to my anxiety that living a fuller life comes only at the expense of everyone else’s perception of me. I’m afraid if I die people will say, “he was pleasant and calming.” It’s perfectly wonderful to be pleasant. I’m happy to provide some kind of calm. But coming close to my potential death has made me realize that I am not living enough, and in order to live more, I need to change my mind, push it into caring less about what other people think of me. Nobody has ever told me they hate my body, after all. Only I have said that about myself.

For someone with anxiety who also hates their body, this is not easy. Getting older helps. If my body brushes up against someone on the T now, I can’t help that. I can apologize. I can try to minimize it from happening. I can take my backpack off. People usually understand. Accidents happen.

If I say something silly in a conversation with new people, say, a group of other parents I don’t know very well? I can just laugh it off and not obsess over it later. The perception others have of me still matters more than I’d like, but I am working on caring about that leas. I’d rather be known as someone who lived outside of corners than contorted myself into them.

For the first time in a long time, I’m happier with my body. I still don’t like it, but I don’t hate it as much as I used to. My feelings are maybe more along the lines of begrudging respect. We’ve been through a lot together. I’m going to celebrate the one-year anniversary of my brush with death with a show in downtown Boston, alone, but surrounded by strangers, all of our collective bodies absorbing the live music. It’s a sold out show and will be crowded, but I will not stand in the back or off to the side. My body will brush up against others. And while I will try to minimize this from happening as much as possible, and I will absolutely do my best to not make people uncomfortable, my body may brush against another body for a moment as the crowd shifts and sways to the rhythm of the performance.

And so be it. This is both the price and the glory of being alive, and deciding to embrace whatever life we have left while we can.

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