by Laurence Clarkberg
As if in a dream I am lying on a bed in a dimly lit hallway. Several of my various body parts are in agony. My eyes are so red that I resemble Darth Maul, the demonic Star Wars character. My tongue writhes painfully in my mouth; it feels like a sadistic person has decided to use it as a pin cushion. My scrotum is bright red like Rudolph the Reindeer’s nose and it burns painfully. About a dozen people are crowded around my bed, men and women in their mid-twenties and thirties, all wearing white coats.
“Pull your pants down,” one of them says. I do so and a gasp of amazement emits from the crowd.
“Mind if I take some photos?” one of them asks.
But this is no dream, I assert, it is a memory of last week, when I was abruptly swallowed into the bowels of the American healthcare system. I have emerged a week later, intact, improved even, and with a story to tell. Gather ‘round my friends…
It all starts about a month ago when I am welding in my garage. I feel a stinging sensation on the back of my right knee. I don’t think much of it—probably I had brushed my red-hot welding rod against my leg, I should probably wear long pants instead of shorts when welding—and I promptly forget about it. But about two weeks later that little sting has grown into a big purple spot on my leg, and my skin there is warm to the touch. Friends encourage me to get that taken care of. So the next day I go to a local walk-in clinic, secure a doxycycline (antibiotic) prescription, and begin a ten-day course of that medicine. The doctor there suggests that I also get a Lyme test in case this was a tick bite. “Oh it’s not a tick bite,” I say. I am very familiar with tick bites, having gotten bitten once or twice a year for the past seven years. Whatever this infection was, it did not produce the characteristic fatigue and sore joints that a tick bite would produce. The doctor orders a Lyme test anyway, “Just in case.” I later determine that this infection was most likely caused by a wasp sting, exacerbated by my not removing the stinger. And since that time I’ve seen that little black wasps have moved into my garage. I mention this because the cause of the infection proved to be an important clue as the story unfolded.
As expected the infection on the back of my knee clears up within 24 hours. End of story, I thought. However, the next day my scrotum erupts into a painful rash. I assume it is herpes. Again I went to the walk-in clinic, secured a seven-day course of valacyclovir, and assume that that will take care of the rash. Then things kind of snowball from there. A few days later I wake up with a fever and a sore throat. My eyes start turning redder and redder. I try to tough it out for two days but on the evening of the second day I start shivering uncontrollably. Judy convinces me to go to the Emergency Department of our local hospital. That day was Friday August 25th.
I don’t generally like going to hospitals, and I’ll avoid it at all costs. Hospitals are negative and even dangerous places where there is a high concentration of misery and germs. The ED at Cayuga Medical Center is no exception. When we arrive our hearts sink. The waiting room is filled with people, some of whom we overhear saying that they have been waiting there for over five hours. We sign in, sit down and wait. We hear moans, groans, cries of pain, and cries of despair. We see a bloodied man in a prison uniform who is escorted by police. We hear the sound of violent retching in the background. We assume the sound is made by drunk college students on their first binge. A group of three asian men, college-age, one with bandages around his knee and hand, saunter in and take their seats. An older East Indian woman supported by her son is clutching her belly and moaning steadily. The triage nurse calls us over. I tell her my symptoms and she determines that I am not in immediate danger. “What are those spots on your forehead?” she says. “I don’t know,” I say. “I can’t see my own forehead.” It turns out that little red spots have sprouted on my forehead, chest, and the backs of my hands.
I notice that people who walk by me tend to stare at me. I realize it’s because of my bright red eyes. Judy says I look like a vampire. When I catch them staring at me they look away quickly.
A fat guy in a wheelchair complains about the seeming lack of activity. “I can see a group of doctors flirting with the nurses behind the door there,” he says. “But the damn bastards don’t have the time of day to help us.” A group of four scantily clad college-age girls enter with bandages around their hands. They proceed to congregate in the center of the room and giggle for the next few hours. We see parents come in with a sick baby in a stroller. They wait a couple of hours, grow impatient, and then leave. Two more male students arrive, one with a bandage around his hand and a scowl that tells us he is likely coming from a fistfight. A father attends to his teenage daughter lying in a bed in the waiting room. Her hair is shaved off and she winces with pain when he helps her get up to go to the bathroom. Around 2am a man with wild eyes and a gravelly voice bursts into the waiting room shouting “I’m back!” As he enters we see that he is handcuffed and followed closely by two police officers. They drag him into the back. He proceeds to howl like a werewolf over and over again. Finally they drag him back out the front door. As he leaves he addresses the crowd gleefully over his shoulder: “Who wants to get arrested? C’mon! C’mon!”
Finally at about 5am, after an eight hour wait, we are ushered into the back area to see a Dr. Forest. There are patients asleep on beds all around us. We hear the beeping of heart monitors. We hear a young boy chanting “ow-ow-ow-ow” over and over again. I can barely sit up in my chair, I am so tired. Dr. Forest and a group of nurses crowd around me. I tell them my symptoms. Dr. Forest looks perplexed. “I’m not sure what this is. I’m going to go do a little research and come right back.” He leaves the room. He returns with a grave look on his face. “I think this might be an allergic reaction to your medication called ‘Stevens-Johnson Syndrome’,” he says. “Let me check with a colleague.” He leaves the room again. In the meantime Judy and I look up SJS on our cell phones. The prognosis is dire. It seems that over the next three days I can expect that much of my skin will slough off and then I’ll go blind. Dr. Forest returns and hesitatingly confirms what we’ve read. He says that he and his colleague think that I should be transferred to a larger hospital that has a burn unit so that they can give me adequate care when my skin starts falling off. “Um, okay,” I say, thinking, “This is going to take longer than I thought.”
The nurses set me up in a bed with an intravenous tube and I sleep for a long time. When I awake they are making plans for an ambulance to transfer me to the ED at Strong Hospital in Rochester, a two-hour drive. Judy plans to drive there separately. My friend Doug visits and I inform him that the name of this illness is the perfect opportunity to make a puerile joke. "Watch out for Steven's Johnson!" he says. We share a good laugh.
Around 4pm two Emergency Medical Technicians arrive and wheel me into their ambulance. One of the EMTs sits in the back with me while the other one drives. She seems to want to chat but by now my lips are so chapped and my throat is so sore that I can’t talk easily.
When we arrive at Strong Hospital the parking area by the ED is filled with ambulances. A line of stretchers, each with one sick person and two EMTs, is waiting to get into the building. We get in line. I look over at the guy in the stretcher next to me. He looks in bad shape. There are streaks of blood on his face. “Where am I?” he asks his EMT.
“You’re in the Emergency Department at Strong Hospital. You were in a motorcycle accident.”
“Was it my fault?”
“I don’t know.”
“Am I hurt?”
“You’ve got a broken femur.” I look over at his leg and I can see blood seeping from his swollen jeans.
The triage nurse listens to my symptoms. I hear people whispering behind me: “That’s the Stevens-Johnson Syndrome!” they say. I turn around and they look away quickly. There are no rooms available so the triage nurse assigns me a bed in Hall Area 4. The EMTs wheel me to my spot and leave me. Judy arrives shortly after that and takes a seat beside me. We settle in for another long wait. We spend the next 48 hours in the busy hallway, attended by harried nurses and perplexed doctors.
The scene at the Strong ED is like a war zone. There are constant shouts in the distance and I imagine I hear the sounds of machine guns and artillery fire and I imagine the smell of gunsmoke. There is a constant bustle as nurses, doctors, EMTs, police officers, construction workers and janitorial staff make their way past my bed. We hear the constant beeping of heart monitors and the occasional crackle of the loudspeaker. The beds in the hall are only separated by curtains, so we can hear our neighbors very well as they talk with the doctors and talk on their mobile phones. We get to know their stories well. This provides our entertainment for the duration of our stay in HA-4. Our neighbor to the north is a brooding obese young woman who claims that she fell over backward in her chair at her assisted living unit. She claims that the staff there, instead of helping her up, started kicking her and berating her to get up. The doctors can’t find anything wrong with her, and she admits to “not feeling safe at home”. They send her home.
The next person to take that bed complains of feeling dizzy and having trouble forming words. The doctors do a couple of CAT scans and determine that she has lots of little blood clots in her brain. “If you had come to us when this first started happening a week ago we may have been able to treat them,” they tell her. “But at this point they are not treatable and you’ll have to live with some disabilities.” She cries softly for the next few hours.
Our neighbors to the south appear to be a father and daughter from Cambodia. The father has some sort of liver ailment and is in line to get a transplant. They seem very loving and their melodious voices rise from the curtain behind us.
From a bed farther to the south we gradually learn the story of Mr. Goodman, a diabetic leg amputee whose wound has become so gangrenous that he is in for a second amputation above his knee. He is a rough and ready character and does not hesitate to sprinkle his conversations with swear words. We suspect that he has hearing damage from too much rock n’ roll and so he speaks very loudly. We hear every detail of his hours-long phone conversations with his sister Amy calling in from South Carolina.
After a few hours Judy and I nod off to sleep, but we are awakened every hour or so all night long by eager young doctors who want to hear my story. They are very excited by the puzzle that my symptoms present to them. I become something of a celebrity. Over twelve doctors visit: first the burn doctor, who determines that I probably do not have Stevens-Johnson Syndrome. Then a general medicine doctor quizzes me. “Have you been around any unusual chemicals at your work? Have you been around any sick people?” And, later, when he sees me in the hall when Judy is not there: “Have you had sexual intercourse with anyone other than your wife?” A team from Infectious Disease asks many of the same questions. Then another team from Allergy. Then the eye doctor comes and shines a bright light in my eyes. Then a team from Dermatology arrives. One of the doctors, a young white male, is surprisingly confrontational. “You’ve got a tick bite,” he asserts.
“No I don’t. There was a sting,” I say. “Ticks don’t sting. And there was no herxing. I didn’t feel the usual fatigue and joint pain.”
He ignores everything I’ve just said. “Yes, you’ve got a tick bite and you’ve contracted Lyme disease and the herxing is the source of your weird symptoms.”
I protest. “I know Lyme disease and herxing very well,” I say. “I’ve had Lyme for about seven years now.”
“No you haven’t,” he counters. “That’s impossible. There is no way you could have Lyme for that long. Lyme is an acute disease that needs to be treated within 30 days. There is no such thing as chronic Lyme.” At this point I was speechless. For me this is a great irony. Back in 2016 when I first got Lyme it was very difficult for me to convince the doctors that I had Lyme and needed the doxy for treatment. Today I am having trouble convincing the doctors that I don’t have Lyme and that I don’t need the doxy for treatment. Sigh.
One of the doctors prescribes thrush medication in case the yellow powder on my tongue is thrush. Eventually the parade of doctors dwindles and I start to fall asleep. Then a man wakes me up to wheel my bed over to the x-ray lab. The x-ray tech positions me in front of a big machine and says “freeze” while she goes over to push the button. I freeze. I continue freezing. More freezing. Even more freezing. Eventually I say, “Can I stop freezing now?”
“Oh, didn’t you hear me say ‘breathe’?”
“No.” Apparently she had whispered the word “breathe” under her breath. This happens two more times.
I awake on Sunday morning feeling a little better. Two young doctors, Dr. Zoe and Dr. Matt, cheerfully explain to me that they are coordinating the doctor team. They take me to a shower room to do a photo shoot of all the various spots on my body. “I’m trusting you not to post these photos to porn hub,” I say. They laugh.
Our entertainment for the day is listening to Mr. Goodman down the hall speaking loudly on the phone to his sister. He reveals some true repulsiveness in his character. “Did you hear about how the democrats are indicting Trump for all kinds of bullshit charges?” he asks his sister.
“They’re just trying to prevent him from running for president,” she says. “Fuckin’ democrats.”
Mr. Goodman waxes philosophical. “If this thing gets bad I don’t want to be a burden on you all,” he says. “Take me out if you have to. Have Shawn do the honors with his fuckin’ automatic rifle.” Amy laughs. “Rochester has a lot of diversity,” he tells Amy. “There are all kinds of niggers, half-breeds and Puerto Ricans here.”
Over the day Sunday my sore throat improves to the point where I can swallow more easily. My tongue, however, remains sore and then at around 5pm a weird thing happens: my groin starts burning again and the inside of my mouth becomes covered with painful white rice-grain-sized growths. I am alarmed. I am attended by the night doctor, Dr. Falliou. Thinking that this might be a recurrence of my herpes symptoms, she restarts my valacyclovir course. And she jams a swab on a stick into my mouth to try to take a sample. It is excruciatingly painful. “I’ll just pretend that I’m one of those people who like pain,” I tell her. Also in the meantime the doctor team has decided that Lyme is a possibility and so I am given a doxy pill too. Plans are made for me to take a longer course of doxy.
By Sunday night I am becoming delirious from lack of sleep and things get surreal. The goddess visits me in the usual way: first I am treated to visions of a colorful undulating mandala, then monster faces come and go, and if I respond without fear she speaks to me soothingly. "This is just a test," she says. You're doing great. Don't worry."
"Um, okay," I say.
I hear the nurses and EMTs conversing. They live in a strange world. The nurses are in a constant battle with homeless people. The homeless have learned that they can get into the ED and get a good night’s sleep if they claim to be suicidal, or if they say they are having chest pains. There is lots of shouting. The police are called. “Yo, bro, let me through. I got maced today for asking someone to help me jump start my car…I got fuckin’ maced!...You’re fucked up! You’re violating my rights!...I’m gonna start breaking things. Oh so many things. Ha ha ha ha!”
One nurse says to another: “Am I crazy?”
“We’re all crazy,” is the reply. Another male nurse says something flirty to the first nurse, female, and is rebuffed. “Oh, you hurt the last feeling I have!” he says, pretending to be hurt.
The EMTs converse matter-of-factly about horrific events. “I got called to a stabbing yesterday. They didn’t call in time.”
“Was that woman we brought in breathing?”
It feels like I am stuck in a dark roiling underworld. There is the vague promise of sometime soon ascending to a private room. “Is our room ready?” we ask.
“I’ll ask the Provider,” the nurses say.
On Monday when I awake my skin spots are darker and larger. The white growths on my tongue do not abate. The labs never confirm herpes. My scrotum and eyes continue to be bright red. I sense that behind the scenes the doctor team has been debating the Lyme hypothesis versus the reaction to doxy hypothesis. I am afraid the doctor team has slipped into a kind of groupthink on the Lyme question, where force of personality is leading the decision rather than attention to the facts. The key question is: should I continue taking doxy or is the doxy itself the problem?
Against our will, we hear more of Mr. Goodman’s sad story from down the hallway. Depending on how recently he has been giving his oxycontin painkiller, he alternates between snarling at nurses and passer-bys and speaking lovingly with friends and relatives on the phone. When the oxy runs out it’s “Watch the fuck where you’re going!” and “Fuckin’ people.” But right after his dose we hear him talking with a friend: “When my sister Amy told me I could stay with her I was in tears,” he says. And when he hangs up with his friend they share a mutual heartfelt “I love you man!” He tells his friend about how he found out about his condition. “My feet were sore all the time so I went to see the doctor. The doctor said ‘Can you take off your socks please?’ I hadn’t taken off my socks for several weeks. When I took them off the doctor said that several of my toes were gangrenous. And that I have diabetes. Shortly after that I fell down and broke my hip. And then I had to have my leg amputated.” Later Mr. Goodman grows angry that the nurses have not been giving him as much oxy as he would like. He and his sister Amy loudly begin planning a malpractice lawsuit.
“I’ve got all the doctors names and phone numbers and addresses and the timeline of events during which they refused to treat your pain,” she says. “This is a fuckin’ no-brainer. They’re gonna have to pay and pay. Remember that woman who won a million dollar lawsuit ‘cause she fuckin’ spilled fuckin’ hot coffee on herself? It’s gonna be like that. We’re gonna have so much money. We’re gonna buy you a little scooter so you can tool around on that.” They both laugh uproariously.
Finally on Monday afternoon I am moved up to a hallway on the sixth floor while my private room is being prepared. The atmosphere is much more calm and refined. A group of a dozen or so doctors gathers around me for “rounds,” quizzing me and taking pictures.
The eye doctor, a swaggering young woman, comes around to give me an eye exam. She carries with her a portable "slit lamp." She places it on her head, adjusts the goggles, and then she proceeds to slam me onto the bed, yank my head back and shine a bright light in my eyes while exhorting me to "Look into the light! Look into the light!" When she's done I tell her "You're a difficult person." She seems a little hurt by this and asks me to explain. I tell her "Well the other doctors just give me pills. You yank my head back and shine a bright light in my eyes." She laughs and elucidates: "No one wants me to shine a light in their eyes. And yet that's what I have to do."
I move into my room. Dr. Dumeoni of the infectious disease team comes around to ask me some details. Unlike the dermatology doctor who was very confrontational, she is a compassionate person. Judy later describes her as beautiful, calm, competent and loving. She actually looks me in the face and listens to me while I explain why I don’t think I had a tick bite. Judy finds a photo of the bite and shows it to her. She concludes that the initial infection was not a tick bite, mainly due to the fact that I felt a painful sting. Tick bites do not sting. Even though the tick is burrowing into your skin, which seems like it would be painful, you do not feel it because the tick’s saliva anesthetizes your skin as it goes in. And I know from many personal experiences with Lyme “herxing” that I didn’t have any herxing after the bite. Herxing induces extreme fatigue and joint pain. I didn’t experience those, I tell her. Dr. Dumeoni further points out that the positive Lyme test could just be an indication of my pre-existing Lyme. So the conclusion is: I’m having an allergic reaction to the doxy. We discontinue the doxy and even put it on the list of medications I’m allergic to.
As Dr. Dumeoni gets up to leave Judy bursts into tears. “I’m so worried about him!” she blurts out. Dr. Dumeoni takes off her exam gloves, takes Judy by the hands, looks into her eyes and tells her “He’s going to be alright.” It’s a turning point for us. That night I am put on prednisone (a steroid) to reduce my immune system’s response to the doxy, and I’ve gradually been getting better since then.
The next morning (Tuesday) I am well enough to leave the hospital. Each doctor team comes in in turn and tells me the final diagnosis: erythema multiforme. It is an inflammatory reaction to medications or infection. It’s not exactly an allergic reaction but similar. It targets mucus membranes. It is not life-threatening. It is like a much milder version of Stevens-Johnson Syndrome. It turns out I never had herpes, my red scrotum was part of the allergic reaction. And I probably never had thrush, the yellow powder on my tongue was also part of the allergic reaction. And even the painful white growths that appeared suddenly all over my tongue I now realize were probably not microbial in nature, they may have been my body's response to my brushing my tongue with a toothbrush to try to get the yellow powder off.
What lessons can we learn from my experience? For my own part, I’m going to be much more cautious about taking medications. I’m going to try to be much more sensitive to the microbes that make up my body, and to try to live in partnership with them rather than dominate them. In the western world I think we’ve fallen into a simplistic model of medical care in which we identify symptoms, identify the illness, vilify the germ that cause the illness, and lastly take a pill that eradicates that germ. That was the model I used to treat my original leg infection, which worked, but then I continued to use that model to treat my imagined herpes, thrush, and white growths. I would have been better off listening to my own body, and understanding that it was the doxycycline itself that was causing my symptoms.
We repeat this mistake of dominating rather than seeking partnership with life on a community scale. We allow our authorities to pollute our water and pollute our land in their eagerness to kill “weeds” and “pests”. Instead of making things better they are instead damaging irreplaceable ecosystems and biodiversity. We need to stop thinking of some living creatures as our enemies and instead welcome all life as our partners.
What would a “partnership” medical model look like? I can imagine a day when our providers encourage us to be aware of our own bodies, and to be in balance with our diet and the microbes that make up a large part of our bodies. We need research to find out what all those microbes are doing, what symbiotic relationships we have in place. Then when we do get a bad infection that our body can’t handle by itself and need to take a pill like doxycycline that kills microbes indiscriminately, we will also know what about our bodies need to be protected from the doxy “blast” and what our microbial friends need to be replenished.
Lastly I want to thank all the doctors and nurses and medical staff who helped me through this ordeal. They are struggling valiantly in imperfect conditions. And most of all I want to thank my wife Judy who sat by my side and shared this adventure with me.