It started with a Lean Cuisine. After a night out catching up with a friend, I just made one of the last NJ Transit trains leaving Penn Station that April night, traveling the 20 or so minutes to the suburbs of New Jersey where my wife and I had moved two weeks prior in anticipation of welcoming our first child to what truly is NYC’s sixth borough (daycare and two-bedrooms aren’t cheap in the original five boroughs).
Dinner consumed and sleep completed, I awoke with one of the worst bouts of food poisoning I’ve ever encountered, a wasting that lasted through midway into the next week. Eventually, the illness subsided, but I wasn’t concerned when I woke the following Saturday with slight soreness in my right ankle and the inability to fully extend my left knee. Seemed odd, sure, but perhaps that was just a lingering side effect of the tainted Swedish meatballs. And there was a crib to be built along with final trips to Target and Buy Buy Baby.
On Sunday, though, I could barely put any pressure on my right leg, hugging walls as I walked in an effort to support myself. A nighttime sprained ankle, I thought, but I still went to the ER on Monday, while accompanying my wife for her final OBGYN appointment. The medical establishment’s consensus: must be a sprain. I spent four more days in sheer agony, unable to put any pressure on my right leg and unable to sleep because the pain was too intense. After our son was born, I was the one wheeled out of the hospital while my wife carried our nine-pound baby. By this point, my other ankle had started to tingle (both eventually swelled to the size of a grapefruit, and my left knee was significantly inflamed, looking as though a softball had lodged itself behind the kneecap).
The first two weeks of my son’s life were a blur. Of course, there was no way I could help during feedings in the middle of the night — it took me 10 minutes just to navigate the short hallway between the bed and bathroom. And unless I was sitting on the couch RICEing my legs (for what I thought must be the two worst sprains in the history of orthopedics), I couldn’t hold my son. I was an invalid, completely useless to all around me at a time when those same people needed me the most. My brother had gotten married during this time period, and I recently looked at the photos from the ceremony, which was held at City Hall: shuffling along in crutches, my ankles are encased not only in compression wraps but also air casts.
The realization that my “sprains” had — HAD — to be something more significant arrived during my son’s third week on earth. My general practitioner was located in Manhattan, so I found a local doctor who, for the first time since this health scare began, had more than an inkling of what was plaguing my body: I had joined the roughly 20,000 Americans who suffer annually from reactive arthritis. This exceedingly rare form of arthritis, which shares symptoms with rheumatoid arthritis, was attracted to the genetic antigen I carried, passed down maternally, and had proceeded to attack all of my white blood cells. When I finally was able to see a rheumatologist, I was told that my CBC — complete blood count — was one of the lowest he’d ever seen.
As I read Molly Osberg’s harrowing essay for Splinter detailing her health catastrophe, the result of contracting a rare form of strep that began to wreak havoc on her internal organs, I found myself mentally transported to my own uncertainties this past summer. Her concerns about medical expenses, proxies, if her full-time job still exists, and whether or not any of the poking or prodding will work — all of those emotions became all the more real again. We even both made it into medical journals!
I encountered them all when I was admitted to a Brooklyn hospital, though I only remember a fraction of the people who tried to puzzle out what was sending my body into septic shock. According to my medical records I saw six specialists in 40 hours. There was the anesthesiologist who assuaged my terror when I was put under for a bronchoscopy (I was afraid I’d wake up with a camera down my larynx), the infectious disease doctors who asked me about my sex life, how often I got high, my last period, whether I’d been anywhere near livestock.
I also shared her feeling of invincibility. Before I contracted reactive arthritis, I rarely needed anything more than a hot shower and a few doses of Dayquil to right whatever was ailing me. I didn’t get sick. As Osberg writes,
As someone with a pack-a-day habit, I got a little sick every year, and my response was to sleep (or work, or drink) through it until the issue somehow resolved. Before 2017 I don’t think I’d been to a doctor in about five years—though as was later reiterated to me by one chagrined specialist after another, my abysmal life choices up to that point didn’t end up making much of a difference.
Like Osberg, I was fortunate to have insurance, but if I had been a freelancer, my bills would have been astronomical. One shot of Humira, the immunosuppressive drug I inject twice a month, costs upwards of $500 without coverage, and that doesn’t include the barrage of pills I take daily. As I was reading Osberg’s piece, I stumbled across the story of Donald Savastano, a 51-year-old from central New York who recently won the lottery—a $1 million prize. A construction contractor, he first decided to visit a doctor, something he hadn’t done in several years because of his lack of insurance, before lining up a vacation. Following a diagnosis of stage 4 lung cancer, and just twenty-three days after winning the award, Savastano died. Osberg conveys the sheer terror that accompanies such a health scare; the worry isn’t so much about how to survive — it’s about how to recover.
Never mind recovering physically or financially in any of these scenarios: I can’t imagine surviving emotionally, fielding calls from collections agents, facing eviction, waiting for the pain meds to hit so I can keep at a futile job search with an IV still dangling from my side. I am 29 years old, with no pre-existing conditions before this moment, and I am unemployed and exhausted and in pain all the time.
It took one month before I could walk a distance greater than a hallway. It took another month before I could walk back and forth to the elevator bank in our apartment building. And it took three months before I regained my walking gait and balance, and didn’t feel any debilitating pain for the first 90 minutes of my morning. It’s now been eight months since the diagnosis, and my health has somewhat returned to normal — although my right Achilles still aches every day, and I’ve been told to limit my exercise to stretching and spinning (so as to not potentially tear the tendon). But I can walk, and just the normalcy of that activity is something I never thought that I would have taken for granted. It’s those actions that become the most significant.
Around mid-August they took the PICC line out. My white blood cell count went back to normal; I was cleared to drink by far the best beer of my life; the scabs left over from the drainage tube punctures in my torso fell off. I was pleased the surgical incision had missed my favorite tattoo, and less pleased when streaks of my hair turned gray and started coming out in clumps, or when my nails fell off—a months-delayed reminder of that time my body was preparing to die. I went back to work towards the end of the summer.
Get the Longreads Weekly Email