Shortly after relaunching this website, one of our editors came down with a mysterious illness. Here is the strange tale of what happened back at the end of August…
BIENVENUE A HOTEL DIEU
I can’t tell at this point if it’s the itching that starts the sweating or the sweating that starts the itching. All I’m sure of is that I’m scratching. I’m trying to pretend I’m not scratching by scratching backwards—by that I mean dragging my hands against my body nails in, palms out. Somehow that makes me feel like I’m not completely giving in to my impulses.
This itching that came at night was the death knell of a temporary condition that I spent two weeks convinced was something much more than temporary. Doctors in SARS masks had been jabbing me with needles and staring down at me in groups, speaking to each other in deep medical jargon and smiling quarter-heartedly at me before waddling out of the examination room. So went the last week of August—and, arguably, of the summer—out in Ann Arbor, Michigan, a town I’d never visited before. I was halfway through a trip with my band Caveman, in which I play drums and do a little singing. We were on a path through the Midwest that had us darting up into Canada for about 48 hours before looping back to the northeast, all in support of a truly fantastic band out of Philadelphia called The War on Drugs. I happen to be one of those people who actually pay handsomely for insurance that is rarely used: $310.40 a month, to be precise. So, of course, the first moment in my life that I get so sick that it frightens me into visiting an emergency room has to strike during the aforementioned 48-hour jaunt into foreign territory.
By way of explanation: I’d woken up two days beforehand in Boston with what appeared to be a series of swollen bug bites underneath my waistband and on the right side of my neck. My first thought was that I’d experienced some type of strange reaction to an insect bite, and it would probably subside with the aid of some Benadryl and a lot of water. By that afternoon, I was getting heavy fever chills and the rash was spreading quickly. Incredibly quickly. We played a show in Winooski, Vermont that night, and I awoke in our motel the next morning looking more and more like the most exaggerated of Google images.
I played the Montreal show the next day hoping that it would just go away. It didn’t. By midnight I was in the ER of a hospital named “Hotel Dieu,” or “God’s Hotel”—I shit you not. The bartender at the club had told me that ER services in Montreal are mainly geared toward old people in the immediate process of dying, which in hindsight seems to have been her polite attempt at both explaining the terrifying name of the hospital and preparing me for the horrible quality of the service I was about to receive as a fairly young, not overtly expiring non-citizen.
I drove our rented van over to God’s Hotel and checked myself in. I was actually kind of astonished at how little English is spoken in a city so close to the U.S. border; I felt as though I was being taught some obtuse, poorly-timed lesson in empathy and linguistics. After being warned by a local that my visit would probably cost somewhere in the neighborhood of $200, I was shattered when the night clerk informed me the cost to see a physician would be $909.24. I knew they wouldn’t be able to do much for me, as fevers and rashes normally fall in the wait-it-out category of symptoms, and with no prior knowledge of me as a patient—and no common language in which to communicate my medical history—they would probably just send me off $900 lighter and not much closer to recovery. That all said, the prevalent thought in my mind was “I don’t want to remember this as the moment I let $900 keep me from being alive.” Paranoid, I know, but as you’ll see there would be a whole lot of people enabling my paranoia.
Starting with the nurse who immediately put on gloves and a mask after seeing the rash on my arms and chest and quarantined me into a little waiting room of my own before putting a mask on me and sending me back to the general waiting room to wait for the specialist. Never have I felt more like a leper. The other patients stared, shifted anxiously in their seats, and then looked the other way. I groaned and looked down at the ground.
Enter the specialist. He brought with him both a disconcerting gravitas and an encouraging knowledge of English. One of every six sentences was spoken to me in English strictly for the purposes of conveying his total bewilderment regarding my condition; the other five were spent muttering ominously in French to his underlings who seemed to volley potential diagnoses just to have him shoot them down instantaneously.
[quotes]We played a show in Winooski, Vermont that night, and I awoke in our motel the next morning looking more and more like the most exaggerated of Google images.[/quotes]
Reactivation of Chickenpox? Scarlet Fever? Lyme Disease? Measles? Rubella? Most likely it was none of these. He prescribed me an antibiotic for Shingles and croaked that I should probably come back later in the week. He was basically telling me not to leave town. Hearing this from someone who’s donned a mask, gloves, and gown just to talk to you gets visions of Outbreak dancing in your head. I told him I couldn’t stay in Canada and that, at $900 a pop, these conversations were a bit rich for my blood.
One dose of Tylenol and one dose of penicillin later, I was off to Toronto. The van ride was horrible; I was sweating both because I had a fever and because, even though it was hot outside, I did not want to parade my rash around for all to judge. I was covering my entire body other than my hands and face with black jeans, sweatshirt, and hi-tops. This would prove to be my uniform for the next fortnight.
We played that show after which I retired to a nearby hotel with my girlfriend who, thank God, happened to be meeting up with us that night. The initial point of her coming to Toronto was to visit me and to get to see the band play a few shows. Instead of tourist, her role quickly became that of nurse, therapist, and guardian angel. I managed to sleep a little bit despite a truly horrible fever, but woke up the next morning feeling sick and scared. The rash had spread further, and my body was covered in red bumps. Unexplained, undiagnosed red bumps.
I got back in the van and we drove straight to Ann Arbor, Michigan where I was immediately dropped off at the emergency room in the University of Michigan hospital. I’d been told by our lawyer that this was one of the top-rated hospitals in the country and would accept my insurance. Once I entered the ER, it was quarantine time again. This time it took place in English, and there seemed to be a bit more levity on the part of the nursing staff, which went a long way, believe me.
My poor girlfriend accompanied me, unmasked, to all zones supposedly requiring full riot gear. (It is worth mentioning here that the only times she did don the facemask was during cafeteria visits, being more fearful of the illnesses on offer from the gen. pop. than whatever I was working with back in solitary. Funny girl.) Once the admitting doctor, Dr. Peterson, gave me a once-over, I was told that the tour was over for me. This was the afternoon of Thursday, the 25th of August, eight days before our tour was officially scheduled to come to a close.
NEW SKIN FOR THE OLD CEREMONY
The fact that the rash had spread to my hands and feet gave Dr. Peterson pause; he informed me, in as flat a voice as he could muster, that only a very small number of very scary diseases cause rashes that spread to the extremities. So began the blood-drawing parade. If there is a disease that frightens you with its mere mention, I was tested for it. Thanks to whatever one should thank, all tests came back negative. But, as I explained to the nurse, getting tested for a disease you never before even imagined having triggers a sensation similar to that of getting pulled over: Even though I know I’ve done nothing wrong, the second a cop flags me down I become utterly convinced that I’ve killed someone and the murder weapon is sitting in my glove compartment, unbeknownst to me, smeared with my fingerprints.
They hooked me up to an IV. That was a first for me, and man did it ever rub me the wrong way. It feels like you have the nub of a pencil permanently stuck in the crook of your arm, and it turned walking around into an elaborate process of waddling while simultaneously holding a bag of fluid high above my head. It didn’t take more than a couple days of sickness to realize that perhaps the worst thing about it is how difficult it makes the most commonplace of tasks.
That night was the first I’d ever spent in a hospital. The place was busier than usual, so I had to spend it there in the ER. My girlfriend refused to stay in the hotel room she’d already booked and paid for, instead opting to fashion a bed by jamming together two chairs that looked bad enough on their own and even worse combined. (This act was made all the more impressive by the fact that earlier, returning from her first vending machine visit, she’d discovered that my room was the only one in the ER bearing a sign on the door warning potential visitors not to enter unless wearing the proper protective gear.) Myself, I was scared to fall asleep because I tend to toss and turn and feared I would mistakenly tear the IV out of my arm during the night. I managed to get over it but it didn’t really matter—nurses were coming in every couple of hours to check my vitals and take my temperature.
[quotes]To be a point of interest amongst doctors and their students is to be in a situation that definitively puts to bed the notion of ignorance being bliss.[/quotes]
The next morning I was moved upstairs to a larger, proper hospital room that boasted its own window and bathroom. Unfortunately, being transferred meant a new fleet of nurses, doctors, and specialists to whom I would have to continue the endless retelling of the story of my illness. I was getting nonstop visits from doctors representing various departments of the hospital, and every nurse on the floor seemed eager to come in to adjust one thing or another. Doctors who’d previously inspected me started making return visits in the company of five to seven medical students and residents who they’d chaperoned in to have a look. I’d quickly become the floor’s intriguing, unsolved case.
To be a point of interest amongst doctors and their students is to be in a situation that definitively puts to bed the notion of ignorance being bliss. In the presence of a cadre of men and women collectively representing decades of medical study, ignorance was neither blissful nor innocuous; it was a gratingly loud locomotive of terror. Its effect on my state of mind was similar to that of the bulky IV to my right arm: I couldn’t ignore it for one moment. The void where there clearly should have been some form of answer was becoming too much to take.
I stayed another night in the hospital. The doctors were as confounded as ever and a steady stream of Tylenol remained the only active measure being taken. The more time that goes by in a hospital without any diagnostic progress, the more a nagging fear starts to grow; I felt the law of averages starting to shift against me. How long can one be in a hospital before some crucial mistake gets made, before an overexcited doctor prescribes the wrong thing and stumbles across a hidden allergy? How long can a brain withstand a fever of 104 before melting away?
It was that web of confusion that made me “hit bottom,” as the saying goes, in the bathroom the next afternoon. I was trying to keep my composure around my girlfriend, who’d been doing an outrageously good job of keeping hers, and I just hit a wall. My feet were swollen to the point where it was hard to put on my shoes, my hands looked like they belonged to some B-grade troll costume, and my intense fever would not go away. I started stampeding around the room in my underwear, pounding the wall and muttering defeated half-sentences aloud to no one in particular. I went into the bathroom, caught a glimpse of myself in its inescapable mirror, and started sobbing.
It’s not exactly that I thought I was going to die. It was, however, the first instance in my life in which I found myself staring into the abyss, all reassurances and calming agents having been stripped away. It all sounds so teenaged and melodramatic but it made me feel hollow and hopeless. Eventually I calmed myself down a bit and got back into bed. I was doing my best to self-medicate with TV, so I turned it back on and waited. God bless the familiar faces of Law & Order: Special Victims Unit. After speaking with the doctor from the Infectious Diseases Unit who was tending to me the most, it was determined that the cause of my sickness was, well, undetermined. There was no immediate cause for alarm, but there was no cause for calm either and, regrettably, this extended hold period in which I was not allowed to commit fully to any one emotion would last quite a while.
One positive development: the doctors had decided I wasn’t contagious and had stopped wearing their terrifying outfits in my room, and we’d discovered some passable local restaurants that delivered to the hospital. But being in that environment was driving me insane, so we pressed the doctor on whether or not I could split. I wanted to go back to New York, but apparently that was out of the question until my condition improved or at least stabilized. The doctor decided I didn’t need to stay in the hospital, but I did need to come back in a couple of days. I reminded him that I wasn’t from Ann Arbor and couldn’t just hang around, but he was adamant.
This is when I officially entered purgatory. The next five days of my life were lived in a strip mall Holiday Inn Express, waking up to take cabs to the hospital for blood work and check-ups each day. My high fever became so normal that one morning when I was optimistic that my sickness was starting to fade, the nurse clocked me at 103 without my even realizing I had a fever. This was disconcerting.
Every day was the same: wake up with bed-shaking fever chills; call a cab to go to the hospital; lurk outside the hotel lobby wearing my girlfriend’s extra pair of ladies sunglasses (the only pair of shades I could find) to hide the rash that had spread to my left eye; wait for the cab while hiding from the breakfasting families in town to drop their kids off at college; get into said cab; get blood taken; hear nauseatingly ambiguous words from the doctors; take a cab back to the hotel; order food from the California Pizza Kitchen or Red Robin. Since I didn’t want housekeeping to bug us or see me in my condition, our room quickly became a fast food graveyard. Another symptom of my sickness was an eagerness to cry at any movie that came on after 8 PM; this had to be the one side effect I enjoyed. Finally being able to have an immediate and clearly mandated emotional reaction was the closest I’d be getting to catharsis any time soon, so I took the ball and ran with it. (In that spirit, I wholeheartedly recommend last year’s unfairly overlooked tearjerking tale of sibling camaraderie, Conviction, starring Hilary Swank and Sam Rockwell.)
In truth, there was one other reason why I didn’t want housekeeping to see me. I was shedding skin like a goddamn snake. The rash that had overtaken the majority of my body had moved on to a new phase: peeling like some unimaginably bad full-body sunburn. This wasn’t the kind of thing where you notice a little dead skin on your shoulder, slightly reddened from that long weekend in Puerto Rico, and find that beneath the burn-deadened skin there hid a cute little patch of tan. This was more like a salamander, or perhaps even a cicada, molting. Anywhere I sat would be covered in white dust the moment I stood back up. Those cab rides I mentioned earlier? I didn’t even want to glance at the backseat once my small talk with the perfectly charming driver was over. What would happen when he saw his cab covered in white dust? He’d certainly think me to be just some two-faced invalid chatting it up with him while sullying his back seat irreparably with the remains of my awful, no-name disease.
[quotes]Keith Richards and his sojourns to Switzerland for secret full-body blood transfusions had nothing on me; I’d gotten rid of every filthy skin cell and birthed a new one to replace it.[/quotes]
After a few days of convalescing at the Holiday Inn Express, the doctors still had no concrete idea what was happening with me. What they did have was a note accompanying my most recent blood work containing mellifluous phrases that piqued their interest like “deep blue cytoplasm.” The consequences brought on for me by this gorgeous batch of words evocative of aquatic Ghostbusting were not pretty: the doctors wanted me to get a bone marrow biopsy. Not because they thought I had the disease they use that procedure specifically to find, but because they just wanted to be safe and just be sure I didn’t have it. That disease is a cancer of the blood or bone marrow called Leukemia.
At this point, every frightful hypothetical diagnosis came with a lengthy disclaimer explaining that most likely it would be proven incorrect. I was exhibiting a set of very strong symptoms but they were things that either don’t normally appear together, or were missing that other telltale symptom that would tie my case to any specific disease. Accordingly, the doctors needed to try to take the circle that was my sickness and coerce it into the myriad squares of every disease for which I was tested.
After a call to my parents I felt that perhaps going through this horrific-sounding procedure was in fact the best course. I put in a call to my insurance provider, who not only said they would not cover the biopsy, but also left it ominously unclear what portion of my emergency hospital stay they would even cover. It was time to carve a path out of purgatory. At various points of the week we’d been burned by false hope and purchased flights home, only to find out we had to cancel them when yet another fever of 104 would strike and the doctors would put their foot down about keeping us around. After I discovered there was nothing else they could do that I could even come close to affording, my girlfriend and I decided we would just drive home. We rented a car and she drove as I split my time between cherishing the wind blowing in my hair through the rolled-down windows and writhing feverishly in the passenger seat. Fourteen hours and one soul-crushing construction detour later, we were back home. That night I had an awful fever. I’d naively thought that being home would somehow help me. Had a return to my hometown done me no spiritual good?
The next morning I immediately went in to see my doctor here in town and have my blood drawn once more. He told me that if the white blood cell counts were down, then he’d feel good; if they were up, he’d put me right back in the hospital. This time getting sent to the hospital would have far worse ramifications. I would not be going to the ER. He was suggesting I go to what he referred to as “the best”: Memorial Sloan-Kettering. What I didn’t realize at the time is that Memorial Sloan-Kettering is a cancer center. He sent over my blood work to be turned around urgently.
I emerged from his office to find my father in the waiting room. Seeing a familiar face was heartbreakingly wonderful. At the same time, I couldn’t help feeling embarrassed; I looked like a real piece of work still dressed in my don’t-look-at-me ensemble from Michigan. We went out to lunch and I felt defeated, as though my inner resolve had finally been smashed by this endlessly untreatable illness.
I called my doctor four hours after our appointment, as directed, to find that my white blood cell count had indeed gone down—not to normal levels, but enough to indicate it could be headed in the right direction, enough to keep me out of the hospital. When I returned for my follow-up visit a few days later, he sent out my blood work to be processed at a normal pace as my situation seemed finally to be losing its sense of urgency. But that didn’t stop him from calling me from his home on a Saturday afternoon the second he received that blood test’s results: I was all clear. He was genuinely thrilled, and so was I. Hearing that level of relief in my doctor’s voice clued me in to just how bad this whole thing could have been.
As it turned out, I did not have another fever from the moment I woke up at home in New York. The skin continued to cascade off of my body until all signs of the rash were gone. Keith Richards and his sojourns to Switzerland for secret full-body blood transfusions had nothing on me; I’d gotten rid of every filthy skin cell and birthed a new one to replace it. Still, for the first couple of weeks after the rash disappeared, I would experience phantom full-body itching when I went to bed, keeping me scratching till all hours of the night. Those who know me are well aware of my steadfastly sunny disposition, one that doesn’t carry with it much obsessing over death and decay, but this was the scariest week of my life and brought with it the most acute sense of my own mortality that I’ve ever had.
Sitting down to play drums for the first time since falling ill felt rapturous. Afterward, when I stood to leave our rehearsal space, I noticed something strange: a blister on the tip of my right thumb. It had been years since I’d gotten any blisters from drumming. Then it occurred to me: my old skin had become calloused after all that use. Now my skin was untouched and new.