Still Here

This is a glimpse into what survival looks like for me. A normal night, in my body.

Still Here

What a normal night looks like when your body is trying to kill you — and you fight back.

The chills had me shivering like I’d taken an ice plunge. Fully clothed, under three blankets, heat blasting at 72.

My blood sugar: 550. Insulin resistance. All day.

I looked at my arms and legs: a couple borderline-infected wounds, oozing, scabbing black when I scratched them. Every wound a skin cancer.

Blood pressure: high.

Heart rate: 129.

My body was slipping beyond the usual shitty nights of hypertension and high sugars. I had two active fungal infections—one a slowly healing rash—and the fungus had made its way down my throat.

In February, I found out I’ve failed every treatment for STAT1 GOF. The only next step would be another bone marrow transplant, but we’re all worried I’d die—again—as I almost did the first time.

So the NIH, if it still exists in a week, will try a monoclonal antibody instead. Sometimes my body doesn’t love their ideas—or anyone’s ideas—or itself. It’s constantly on a suicide mission, like a toddler running toward an outlet with keys in hand. (My brother survived doing this once. My dad walked in just in time to see him blasted five feet across the room.)

It was just the eighth anniversary of almost going into heart failure because of a new antifungal. So there’s risk. But not much reward, except staying alive. And having nights like this.

But last night, I wasn’t thinking about new drugs. That mountain’s for another day.

Last night, the on-call resident called me twice, begging me to come in.

I stayed home. I was alert, joking with Instagram friends from all over, hydrating religiously. I knew if I threw up, I’d land in an ambulance—and wake my mom.

I almost texted my dad.

It’s usually my incredible mom’s job to do the following but there were many days she had a nursing shift upstairs. And so my dad would have driven me to the ED. Sat on a chair beside my bed while they started the insulin drip. Snuck into employee-only zones to steal me a warm blanket.

But he’s dead.

He died in the same ED where I almost went last night. And now, every time I have to go, I beg the nurses not to put me in Room 22—the room where he died.

Maybe someday I’ll forget the space. For now, it’s tattooed on the backs of my eyelids.

I woke up with a low blood sugar two hours ago. Then again forty minutes ago.

Maybe this is boring to read.

But my doctor thinks I’m a badass for handling this on my own.

So I think so too.

I’m still here.

Five hours until Leo’s party.