I forget sometimes that most of the people who know me today don’t know my story. Most of them may not even suspect there is much of a story. The further I get from my last eye surgery (almost 4 years ago now), the closer to symmetrical my face gets. My eyes will probably always be a bit off, but for all anyone I meet knows, I could have been born that way.
Part of me loves that. It’s what I wanted for years, to not have to share my painful history every time I meet a new person. I used to lament how others could hide their dark secrets on a first encounter, while mine was on full display across my face. Interestingly, though, now that my history isn’t written so plainly on my face, the more I find I want to share. I want to let others know what I’ve been through, that I’m not some empty shell whose life has been easy.
CW: Severe physical and medical trauma
The short version of my story is that on May 13, 2008, I was admitted to Miami Valley Hospital in Dayton, OH with severely bloodshot eyes and blisters pouring from my mouth. I was quickly diagnosed with Stevens-Johnson syndrome by a 3rd-year dermatology resident who had just happened to see this extremely rare condition a few weeks before. Within a week, 85% of my epidermis had been affected and removed through a process called debridement, where the dead layers of skin are surgically removed. Because so much of my epidermis had been removed in so short amount of time, my entire body was tightly wrapped in pig skin grafts that were stapled in place. This severe version of SJS is more commonly referred to as toxic epidermal necrolysis, or TEN, and it affects 1 in 1.7 million people worldwide each year. TEN has a 40% mortality rate, meaning nearly half of people whose bodies are more than 30% affected will die. I was fortunate, then, to have lived and recovered so well. My skin appears normal from a distance, and I have maintained my vision in the past 14 years, albeit impaired. Ulcerations and scarring removed the outer layer of my eyes, and scar tissue has continued to threaten my vision since.
That’s the short, straightforward version of events. the real story is much longer, and much more painful, more difficult for me to put into words. Instead of one coherent, chronological story, I have snippets. I recall scenes from the hospital, often twisted by the high levels of morphine in my system—”Strong enough to kill an addict,” I was told by nurses.
I remember my night nurse, Chris, talking with a trainee one day when my mom was up visiting. For the first three weeks I was in the ICU burn unit, I had a designated nurse day and night. He told his trainee, “That button will deliver 10 milligrams of morphine every 10 minutes when it’s pressed. It is illegal and against hospital policy that we or any visitors press the button for the patient.” My entire body, including my face and hands at this point, was wrapped in the thick, mesh bubble-wrap-like pig skin grafts. I could barely even move, let alone hold onto the small, handheld button that would deliver relief from the constant searing pain of friction against raw, inflamed dermis. I grunted and tried to wriggle my fingers. “Now,” he instructed the trainee, “press the button.”
During the pandemic, there’s been controversy over whether the term “hero” is appropriate for the doctors and nurses essentially risking their lives on a daily basis to fight a virus that has already killed nearly one million people in the U.S. alone. For the 32 days I was imprisoned in a hospital bed in 2008, the nurses and doctors there were not only my heroes, they were my saviors, my confidants, my family. They not only saved my life, but in taking new measures to combat the symptoms and effects of the TEN, they saved what could become of my future life, as well. Because of them, their kindness and resolve and willingness to take risks, I now look and function like a normal 34-year-old. I had a real shot at a future because of them, and I am forever grateful.
Yet, there were horror stories, too—of corners cut and rules not followed that should have been. Early on in my stay, it became clear that I could not eat for myself. The blistering and sloughing in my mouth and esophagus was too severe, and there was no way of knowing yet how extensive the damage may be to my internal organs. I was extremely lucky—my TEN only affected me externally. But, we didn’t know that yet. In order to place the feeding tube—I already hadn’t eaten in almost a week and would go on to lose more than 30 lbs in my month-long stay—the doctors first needed to place an intubation tube in my trachea. For the procedure, I would need to be taken to a different part of the hospital, so a lift team was called in to transfer me to a bed with wheels. Why a lift team, you ask? Because at this point, I’d already lost a significant portion of epidermis. Even the sheet over my body shifting slightly felt like being raked with hot nails, in spite of the morphine raging in my veins.
The lift team, comprised of four well-muscled men, lifted the sheet on which I lay and set me gently down on the wheeled bed. It was painful, but bearable. A young pair, a girl and boy probably around my own age of 20, were tasked with wheeling me down to be intubated. Unfortunately, the doctor took one look at my raw, ulcerated throat and refused to intubate, afraid he might do more damage than good. Wheeling me back up to my room, the boy began to complain to the girl about the time this task was taking. I could almost hear his rolling eyes as he whined that the lift team wouldn’t be back for another 15 or 20 minutes. He apparently had much more important things to do than wait. The girl was clearly unsure, but he explained to her that they should just do it themselves. They wouldn’t need to lift me, he told her, but simply slide me from one bed to the next. Slide.
My eyes were practically glued shut against the searing white lights above, the ulcerations and scarring already affecting my tear ducts and soft tissue there. Hot tears pooled at their inner corners at very the mention of this word, slide. Being touched even gently was pure torture. My skin burned at the thought of sliding, and I opened my dry lips, black with scabs from the healing blisters, and told them, “No.” They couldn’t slide me. They needed to wait for the lift team. They ignored me. I began to yell out. Maybe a nurse would hear me. Maybe someone would come and stop them. They still ignored me.
“One,” the boy began counting, “two…”
I called out as loudly as I could manage through the scratching pain of my dry, raw throat, “No! Help!”
There are many things I don’t remember about those 32 days in Miami Valley Hospital, but I remember this one moment so clearly. It has seared itself into my very bones, and it haunts me even today. I shiver as I type this.
The mattress raking across my back felt like I was being openly flayed over a bonfire. I can still feel the thousand small, sharp scalpels digging into my flesh and dragging, ripping me open as heat and pure pain shot through my every exposed nerve ending that touched the beds. They didn’t accomplish the transfer in one slide, so they went again. I could feel the hot blood seep into my mouth as the scabs that were my lips split open with my erupting scream, taste the iron and salt as the few tears my body could still make found their way onto my raw, blistered tongue.
They left. I don’t know how long I lay there wailing, my entire body frozen still as every nerve ending sent signals of sheer pain to my barely conscious brain. I just remember the echoing sound of my screams.
This. This is part of my story. This is forever part of who I am. It does not define me, but it has made a massive, lasting impact on how I can and do interact with the world around me. It’s why I’m okay with sky-diving but too afraid to ride on a motorcycle. I’d rather die, the trauma logic tells my brain, than be maimed again. It’s why I flinch when someone touches me for the first time and I’m not expecting it. Part of my brain still expects pain in any unanticipated contact. It’s part of why I find it so hard to trust my care to any other person. To trust another person, really.
The thing is, we all have a story. Torture just happens to be part of mine. Pain, loss, upheaval—these are not new to me, no matter how “normal” I look or seem. I am positive and hopeful in spite of much, not because of my suffering. That is not to say my suffering is any greater or lesser than another’s. It is simply to claim that this story is part of mine.
Most of us choose not to share our vulnerable history with everyone, and that’s okay. That’s wise, honestly. Most people don’t need to know, or deserve to know. Some of us shout our stories from the mountaintops (or across the Internet, ahem), and that’s okay, too. There is a time when some stories are too important to keep silent, times when society needs to face its vulnerability.
We all have a story, though. We all have parts of our lives that haven’t been easy. We all have moments of struggle and obstacles that have shaped our life paths. Sometimes these stories make us feel vulnerable, and other times, they make us feel invincible. My story has made me feel both vulnerable and invincible at separate times in my journey and, now, both at the same time.
Whether you share your story or not, it is immensely helpful to know it. Just for you. Just for you to truly know yourself, to understand yourself, and to heal.
What’s your story?