TEN/SJS and Me

I was six when I had my first case of Toxic Epidermal Necrolysis/Stevens-Johnson Syndrome.

That’s quite a mouthful and I’m doubtful you’ll remember it or stick around long enough for me to explain it if I type it all out, so let’s just call it TEN/SJS, and say it was a whole lot of pain.

To start with, I don’t mean to bitch but to educate so you avoid my fate.

I’d just started first grade at an elementary school in Detroit that will remain nameless,

But is far from blameless.

My class went to the library for the time and this was the scene of the Crime,

Where my tale begins.

A kid next to me kicked me under our table, and I kicked him back,

And that’s when the librarian snapped and kicked my ass;

He bashed my head into one of the shelves and then made me stand up for the rest of the period.

The force of the blow caused me to black it out, but luckily—or not;

You be he judge.

During the police investigation, we learned this wasn’t his first act of aggression.

A neighbor girl saw what he’d done to me.

I’m happy to confess they removed him from the profession.

The week after the assault, I began having seizures and this bought my childhood life of leisure to an end.

After an EEG, they diagnosed me with epilepsy, and further tests revealed a cystic mass where my head had been bashed.

The week before I was scheduled for brain surgery, I got strep throat;

They put me on penicillin, despite a family history of allergies to it.

“Don’t worry,” they said. “He’ll be fine.”

I don’t mean to whine, but I wasn’t, am not, and still have an axe to grind.

I developed flu-like symptoms, a red, blotchy rash;

And soon my life was hanging by a thread.

Week after week, my parents took me to the doctors;

I grew weaker and weaker,

My fever soaring higher and higher.

Finally, when I hit 103,

my parents took me to Children’s Hospital.

By then I was whisper-thin,

Mouth covered in fever blisters.

They diagnosed me with SJS/TEN on the spot,

Packed me with ice,

And my heart stopped.

Forget what you’ve read about near death experiences;

There were no pearly gates or tunnel of light.

Instead, there was just me floating in a sea of darkness,

Empty all around like a tomb or the womb.

No sound until they shocked me,

Each time only regaining sight long enough to stare up into the bright lights of the triage room.

I’ll spare you the rigmarole of the blow-by-blow.

What I want you to know is this:

SJS/TEN is no joke.

I’ve been poked and prodded more times anyone ought to,

And my parents nearly went broke keeping me alive.

I lost over eighty percent of my skin,

Lay comatose for six months,

And then had to learn how to walk and talk again.

There’s more to my tale,

But I won’t bore you with descriptions of the hell

I’ve lived through.

Just know:

Penicillin allergies aren’t anything to fuck with.