Erythema ab Igne:
A Prayer For Bodilessness

Robin Kinzer

I was so pleased when the mottled burn marks from years of constant heating pad use finally melted from my skin.  They were a physical embodiment of years spent suffering, and when they faded away, I felt breath scuttle more easily in and out of my mouth.  It felt like proof that maybe all my worries were misplaced.  Maybe the pain wouldn’t return.  I stood in front of the mirror, naked save a teal lace bra, and ran creased palms over my abdomen, waxing crescent moon.  Thank you, I whispered to the squishy slope of my belly.  My body was healing itself.

One of the few things I consistently find beautiful about myself is my milk-pale skin, nearly translucent.  I once dated a woman with albinism, and our skin was almost precisely the same shade.  I turn lobster in the sun within an hour.  The last time I went to Pride, crackling June heat, I forgot to wear suntan lotion.  My nose cracked and peeled after just two hours beneath the summer sun.  I suspect I’m part vampire, but am not sure how I’d tolerate drinking human blood.  

The pain returned, and shortly after, so did the marks.  Prone on my gynecologist’s exam table, she turned to me: Kelly is training to be a doctor.  Do you mind if I show her your abdomen?  A single-syllabled Sure wilted from my lips.  I wasn’t asked if it was okay for this extra woman to be in the room in the first place, and didn’t feel like I was allowed to say no now.  These mottled marks on her skin have a Latin name.  It’s erythema ab igne.  She turned briefly back to me, Aren’t you fancy?  Then back to Kelly, You see this a lot in women with endometriosis.  They have to use their heating pads so often that this scattered burn pattern occurs.  

To be frank, I can’t afford to not like my gynecologist.  But I am not a child, and having a Latin name for one of my many medical conditions didn’t make me feel particularly special or fancy.  It just made me remember that I was better, and now I’m not.  It gave that feeling a Latin name.  

Erythema ab igne: Loosely translated, redness from fire.  

Now, I turn away from myself in the mirror, the burn remarks reminding me of a cow’s skin, or a mixed breed dog’s.  Funny how my eyes can be two jade globes ringed with violet glitter; how my lips can be a liquid red simmer; how the tips of my lashes can be a bright, pointed pink.  Funny how I can have sparkling azure stars clipped to each side of my newly raspberried hair.  Still, all I see is the burn marks scattered across my abdomen.  They pull focus— a bully, the unwelcome star of the show.

Maybe this all seems terribly vain.  But the marks on my abdomen are a reminder that my body cannot seem to stay well.  They glare at me in the mirror, where before there was a porcelain expanse I ran my hands over, so relieved to be free of abdominal pain after twenty-one years ghosted by it.  No.  Relief is not a big enough word.  Sometimes cliches are necessary.  The pain disappearing was a literal dream come true.

The pain went away, but I never quite got used to it, kept thinking it unreal.  I swear, I treasured every second.  But I never got used to it.  Now I may never get the chance.  

The endometriosis came back after five years, and so did a series of blood-swollen cysts.  There was surgery for those, but there was also a surprise guest in my body.  A new disease.  Mesenteric panniculitis is so rare most doctors either look it up right in front of me, or say they’ll have to do some research.  It’s inflammatory, likely autoimmune, likely caused by abdominal surgery and/or trauma, and is sometimes fatal.  Mostly, I just know it causes absolutely incredible levels of pain, nausea, and fatigue.  The chronic illness trifecta.

I used to research every new diagnosis to the point of exhaustion.  I have entire stacks of books on endometriosis, on Lyme Disease, on fibromyalgia, on chronic back pain.  Have both the DSM-IV and the DSM-V, which I now find mostly useless, but used to page through during panic attacks.  Calming myself with lists of symptoms, names of mental illnesses I’d never before heard.  Now I dart between wanting to know nothing, and wanting to know everything.  Sometimes when doctors try to explain this new disease to me, the medical terminology slimes briefly through my brain, and slimes right out again.  I can’t hold fast to facts about biology and pharmacology when it quite literally hurts to breathe.

There’s also the plain, lonesome fact that with a disease so rare, nobody really knows anything.  I have an appointment with a doctor from Johns Hopkins in six months, though there’s no guarantee they’re an actual specialist in this condition.  They were simply the first available doctor who so much as treats mesenteric panniculitis.  In six months, it will have been over a year since this all began.  That’s too long to wait, too long to live this way, so now I’m urgently aiming for a virtual consultation with a doctor from Cleveland Clinic.  Just today, I woke to the news that my case has been sent out for review.  This, too, holds no guarantees.  I just have to hope that someone (and someone good) will take my case.  

While I wait, the searing, twisting abdominal pain continues to knock me breathless.  The nausea literally dizzies me, causes me to fall twice within twenty minutes.  (I am clumsy, I’ll freely admit.  I’m not that clumsy.)  The fatigue is so severe it leaves me spiderwebbed to bed, sobbing through eyes I can’t fully open.

I am almost entirely disillusioned with doctors and hospitals by now.  What’s amazing is that this didn’t happen sooner— over a decade bedbound, over twenty-five years worth of medical horror stories.  I wrote a thesis paper about my experiences with bad doctors at age twenty-one, so you can only imagine where I find myself at forty-one.  It took getting a truly rare disease, one with only a couple hundred documented cases worldwide, to fully disillusion me.  Mayo Clinic, Johns Hopkins, Cleveland Clinic: These are widely accepted as the three best hospitals in the United States.  I’ve dealt with each of them in the past seven months.

Mayo told me sharply, as if reprimanding, that they could only see me if I stopped all opioid medications for three months.  They told me such medications would get in the way of accurate testing (entirely false), and they did all of this without ever knowing the name of my disease.  (They did not so much as ask.)  I had such a horrific experience with Johns Hopkin’s emergency room— waiting for twenty-seven hours to see a doctor only to be treated like a drug-seeker, stark cat scan evidence of disease in my belly entirely ignored— that I pulled out my own I.V., blood spurting across the sheets, tears barreling down my cheeks as I pushed out of the room. Logically, I know that gastrointestinal specialists are separate from the emergency room, but I can’t seem to scrub the sour from my mouth.

Cleveland Clinic has promised me the absolute best, most personalized treatment, said it’s likely I could even see my doctor in person after the virtual consult.  Ever the optimist, though life has given me little reason to be so, perhaps even slightly naïve— within a day of my meeting with the care manager, I was measuring mileage, looking up train schedules and hotels, considering friends who might be able to travel to Ohio with me.

Now I wait.  The scatter of deep pink burn scars spreading, deepening, a widening constellation of heat.

When I was sick before, I spent eleven years mostly bedbound, and four almost entirely housebound.  I say almost, because I did leave twice in those four years, both in an ambulance.  The flashing lights surreal after so many months behind a tightly locked door.  The touch of the paramedic jarring, like a language I recognized but was no longer sure I could speak.  I thought I knew isolation.  

Then I developed mesenteric panniculitis, a disease so rare that outside of hospitals, I’ve yet to meet one person who’s heard of it.  The seclusion has been staggering.  There is not one single person with whom to compare symptoms or share solutions.  The two tiny Facebook groups I’ve desperated my way into include almost entirely people asking the same questions as myself, and very few people offering up answers.  There is no doctor I can turn to with even the most basic of questions.  I love my gastrointestinal doctor, but it’s clear we’re out of his depths.  I wish I’d realized that sooner, wish he’d realized that sooner.  But I suppose neither of us knew how sick I would get; suppose he hoped the medicine he chose would simply do its job.

To be frank, I can’t afford to not like my gastrointestinal doctor either.  He was fourth in a series of bad G.I. doctors, and is himself not only a good doctor, but was the first who’d treated even one case of this rabid, rare disease.  He has fought tirelessly for me, sending records, writing doctor’s notes, coordinating care.  It’s not his fault he lacks the proper tools for a job maybe one in a million could do.

My mother also had endometriosis, though she only experienced its severe pain a small scattering of times, and did not develop mesenteric panniculitis.  (Thank goodness, thank goodness.)  My mother also has mild vitiligo, which I did not inherit, mostly on her hands and wrists.  It’s subtle; light brown curling into a pale milk more like my own skin.  When I was very young, I once pointed and said, Mom, you have cow hands.  So pretty.  This hurt her feelings, and she let me know so in no uncertain terms.  I was too young to understand why back then; I’d only been trying to call her beautiful. 

I understand now.

The erythema ab igne are not the only marks on my body.  There are a smattering of minute full moons— strawberry, wolf, harvest— scarred slickly across my breasts.  These, from the period of time I was too sick to shower, and began plucking at my sweating chest.  My bellybutton’s curl is raised and pink, the result of numerous abdominal surgeries, the last just two seasons ago.  Hatch marks score each side of my abdomen, silvered slivers from this same surgery.  Not so long ago, eighty permanent bruises covered my thighs and calves, a mystery no specialist ever resolved.  But when the endometriosis first healed, so did my legs, a chain reaction I refuse to question.

I would gladly keep the erythema ab igne, gladly take back the eighty bruises, gladly see each healed surgery scar return, if I could only surrender the pain.  The nausea.  The fatigue.  I would look myself full in the mirror, run feathered fingers across each mottled pink mark, and whisper: We did it again.  We survived.  But deals like this are only made in fairy tales, and occasionally in supernatural television shows on the CW.

So I wait.  Crying myself to sleep every night, watching people’s compassion flag, feeling the electric spark of pain build brighter every day.  

Maybe one day, I’ll pull off my greatest medical mystery yet.  Maybe I’ll become bodiless.  No longer muscle or fat, no longer stem cells or spine.  I’ll just be air.  I’ll just be light.  You’ll still feel me in the wind’s ripple; you’ll still find new poems by me on your pillow.  I’ll be alive, make no mistake.

I just won’t be body.