Diagnosis: Persisted or Silent Inheritance

*The italicized sections of this blog post are excerpts from a prose poem I published last year with Parenthesis Journal.

Amid her coldest, bleakest point, she discovered a strength she did not know existed.

The age of forty-three haunted me like it was a deadline, an expiration date, an obstacle I just had to push through. If I could just make it to forty-four, I told myself, then everything would be okay. I wouldn’t have to keep checking my pulse at night or wonder if my body would betray me. It sounds silly, but the number carried weight.

My mother died when she was forty-three and I was twenty-five.

We weren’t close. She didn’t even raise me; Mom to me was more like a shadow than a parent, someone I thought I might get to know someday. So when my sister (whom I also didn’t know well) called to tell me she was in a coma and wasn’t going to make it, I didn’t know how to feel, or… how to process. How do you mourn a mother you never had? What I grieved wasn’t her absence in the present, but the possibility. Future conversations, an imagined bond, the hope that maybe one day there would be more between us.

Life continued to move forward. I made it to forty-four, and it coincided with my twenty-fifth anniversary. Celebrating the day my wife and I first met offered a welcome distraction from the quiet fears I had carried all year. It was beautiful to experience joy instead of dread. A month later, I was scheduled to fly to Los Angeles for my final MFA residency, the trip that would culminate in my walking across the stage in cap and gown. In preparation, I did what I always did in November: I got my flu and COVID vaccines. I rarely get sick, and I like to keep it that way. Residencies are petri dishes for germs, with people crammed into rooms, hugging and shaking hands.

I had felt nothing more than a little tired after the shot, and I had only had COVID once. But this time was different. Within a day, I spiked a fever and felt like I’d been hit by a truck. I joked to my wife and friends that this time the vaccine was worse than the illness. And for a little while, it seemed like just that, a bad reaction. Then came the cough, the shortness of breath, the middle-of-the-night wake-ups with my heart racing, gasping for air.

I dragged myself to urgent care. Flu? Negative. COVID? Negative. The doctor handed me antibiotics, a cough suppressant, and an inhaler. I’d never had asthma, but fine, I took the meds. Déjà vu prickled my memory, but I brushed it aside. I had things to do.

By the time I boarded my flight to LA, I wasn’t fully recovered, but I could function. I made it through, finished my final project, and graduated. I came home exhausted but proud. Then the holidays hit, and with three kids and a house full of controlled chaos, I powered through. But by New Year’s, I knew something was off.

The first time I found myself haunted by my mother’s premature death was right before my thirtieth birthday. I landed in that hospital, fighting for my life. It wasn’t just her death that haunted me, but the blank space where my maternal family’s medical history should have been. I didn’t even know for sure what had caused her death. Her mother and sister were still alive, but they had been estranged for years before she died. No one could really tell me about her health. And that void in my past proved to be dangerous.

I had heart failure back then. Doctors blamed my lifestyle: drugs, drinking, and hedonistic behavior. In reality, I was doing what many people my age were doing, without experiencing anything like this. My body was under attack—blood clots in my lungs, my heart, followed by a brain bleed. My prognosis was grim, but by some miracle, I survived and eventually made a full recovery. Later, my cardiologist mentioned a heart infection because it was unusual to see such a radical recovery. But I didn’t pursue it any further. I wanted to forget.

My brush with death changed my outlook, and I made some serious changes to my life. Time progressed, and in the decade that followed, I had four babies with no hint of heart problems. I was active, healthy, and living a very different life than when I was in my twenties. I had proof in my body that I’d outrun my past. So, when the old symptoms whispered at me in late December, I wanted to dismiss them.

But I was dizzy. Then I saw stars. My blood pressure was climbing. All things I couldn’t ignore.
Back to urgent care. This time, the doctor sent me to the ER. I chose San Francisco, the hospital where I’d delivered my babies. I trusted them, and at first, it seemed promising. The doctor on duty ordered a full battery of tests. But by the time the results came in, he was gone, replaced by a travel doctor whose only goal seemed to be clearing beds.

My lab results were uploaded to MyChart, allowing me to view them on my phone: BNP, CRP, and ATP—all elevated. I plugged the acronyms into ChatGPT, trying to understand what was happening inside my body. I told the doctor I felt like I was retaining fluid, that I knew this sensation because I had lived it before. He shrugged and said, “Probably pneumonia.” My oxygen levels weren’t that low. He sent me home with more antibiotics, prednisone, an inhaler, and, after some pushing from me, a small prescription of Lasix.

Google told me one story. My body told me another. The doctor told me nothing.

Google told me one story. My body told me another. The doctor told me nothing.

Within a week, I was worse. Dizzy. Weak. Blood pressure, dangerously high. This time, I drove east instead of west, to John Muir Hospital, which had taken care of me when my deviated septum broke a blood vessel months earlier. They took me seriously right away.

The tests stacked up: fluid in my liver, gallbladder, and abdomen. Heart failure. Again.
But with no drugs in my system, there was no easy answer this time. The only medication detected in my urine screen was Vyvanse, which I’ve taken for years. No blocked arteries. No lifestyle scapegoat. My heart was at it again, refusing to behave.

One night with IV Lasix, and I dropped seven pounds. Seven pounds of fluid that had been crushing my lungs. I spent the next few hours reading everything I could, speculating in my overactive brain about what could be wrong, and my mind went back to that heart infection. In my searches, myocarditis kept popping up over and over again. This had all started days after a dose of the COVID-19 vaccine. My Apple Watch validated that. My heart rate had begun to increase in the days that followed it. But when I mentioned the possibility to my doctors, you could feel the discomfort, the desire to brush it aside. But what else could it be? Test after test came back inconclusive. Finally, they told me it didn’t matter what caused it; treatment was the same. But it does matter when you’re trying to make sense of your own life.

Back in 2010, when I first got sick, a cardiac MRI wasn’t part of the workup, even at a top-tier hospital. The technology was still new, and the Lake Louise Criteria*, which made it useful for diagnosing myocarditis, had only been published a year earlier. It takes time for hospitals to catch up and train their staff.

*A set of cardiac MRI guidelines first published in 2009 that standardized how radiologists identify myocarditis using imaging markers of inflammation.

Echocardiograms were the go-to test at the time—fast, available, and good enough to assess heart function. If doctors wanted confirmation, they’d do a biopsy.

If this had happened today, a cardiac MRI would’ve been one of the first tests they ordered, and this time it was. Back then, the science existed, but not the access, and even now, access was not immediate.

So I waited, tethered to IVs, scrolling through medical portals, reading comments in forums. In the time between the first illness and this one, my older brother died mysteriously, another heartbreaking example of running out of time, but this time, I connected with my sisters. I learned a bit about my mother’s death. It was her lungs, they said, maybe also her heart. Could there be a connection? All of this rushed through my brain, then finally, the word landed: myocarditis confirmed.

Even then, the doctors refused to discuss the possible connection to the vaccine. The social worker was the only one to say it plainly: “This isn’t rare. It happens. Not all the time, but sometimes.”

In the rush to save lives during the COVID pandemic, nuance got lost. Nobody wanted to say out loud that vaccines can have side effects, even if they are rare. But the lack of transparency just deepened people’s doubts.

Here’s what I know: myocarditis is commonly caused by viral infections, especially COVID itself. So the vaccine is not a villain; the virus is usually far more dangerous. But when you’re in the 1%, the person who ends up in the hospital, the science vs. conspiracy argument doesn’t hold up as neatly. Simultaneous truths exist.

Fifteen years ago, if my doctors had taken a closer look, if they had been more definitive with my diagnosis, I would have filed “myocarditis” away, remembered it and stayed up to date on research. I would have known the connection to the vaccine. I could have had a conversation. Made an informed choice. To weigh risks based on my health, not an abstract “everyone.”

But back then, they blamed me. Focused on shame instead of diagnostics, and turns out shame is a shitty diagnosis.

So, when I hear debates about “the vaccine,” I understand. I still believe in vaccines. But I also believe in truth and brutal honesty. Doctors don’t always trust patients to make decisions about their own bodies. They think information will only confuse us. But withholding nuance doesn’t build trust. It fractures it.

I’m still recovering, still on meds. Still tired sometimes. But I’m thriving compared to where I was eight months ago. My heart pumps strong enough to let me parent, write, laugh, and plan for a future my mother never got. I have always known what it means to be a motherless child. My kids have two, so in all likelihood, they will never experience that emptiness, but they deserve to have both of us. So, I take my handful of pills and supplements each day.

I joined a myocarditis group online, and the stories there are sobering. Most cases come from viral infections. Some from vaccines. Damned if you do, damned if you don’t. But I feel lucky that I have lived not once but twice to tell my story.

I’m waiting now for genetic testing to see if there’s a hidden thread linking me to my mother’s fate. Maybe there is. Maybe not. But either way, I want to be sure I do my due diligence to equip my kids with all the information—the good, the bad, and the confusing. In the meantime, I’ve stopped focusing on an expiration date. I’m forty-four now. I’m still here.

Death was not here to play games; she had come to slay—and was not taking no for an answer. But neither was I…