Angelina Fanous ALS Awareness Month

Angelina Fanous is living with ALS. You may know her from “Die Trying,” the compelling report she worked on for the HBO Series VICE last year. In it, she featured the everyday struggles of people living with ALS, as well as the innovative research taking place to fight the disease. Because May is ALS Awareness Month, Angelina recently shared a story via a Twitter thread about her own struggles; her own everyday, raw, human struggles. This is as real as it gets.

May is ALS awareness month, so here's a story (thread) about the cocktails I took to get out of bed while I've been living with als.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

ALS is a neurologist disease that first paralyzes its victims then suffocates them to death. I was diagnosed 6 weeks after my 29th birthday.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

ALS is a beast & usually weakens the muscles quickly but my disease was slow. For a year, you couldn't tell anything was wrong.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

But, man, I couldn't get out of bed. Not from the depression, nor the paresis, but the fatigue. I was a fucking anvil.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

At first, and at a peak millennial moment, I chewed some Adderall. Dying nerves, it turns out, don't take kindly to legal meth.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

my body stiffened up like someone was holding a gun to my spine, and I remember chugging cheap, stale red wine to calm down.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

Any stimulant shook my muscles—quitting coffee was harder than quitting cigarettes.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

I tried the natural route next: Chinese ginseng, coconut oil, ginko, and a handful of other vitmans downed with a protein shake.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

which was mostly, let's face it, a placebo aid that got less and less potent as the disease got worse and worse.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

And it was no match for the muscle relaxers my doctor prescribed when my shoulders tightened and my arms couldn't reach around my back.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

My morning muscle relaxer was the gateway to a caffeine relapse; but y'know, glass of water on a wildfire. I needed pharmaceuticals.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

Methylcobolomin, specifically compounded b12, given daily as an intermuscular injection. Which I gave myself.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

When I stabbed my thigh every morning, I felt like I was punching a brick with a needle the size of my index finger.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

my tolerance for muscle relaxers grew and one became 2, then 3, 4—the pill equivalent of getting drunk at sunrise. Get wasted then sober up.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

It never fazed me, doing all this just to go for a walk or, hell, even shower.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

The easiest part of ALS was giving myself a shot, with fingers that lack the dexterity to write, then wiping the blood off my kitchen floor.

— Angelina Fanous (@NotSoVanilla) May 17, 2017

I'm 32 now, my third year of living with ALS. There's no effective treatment or cure, but there's science! https://t.co/HT0ty48AV2

— Angelina Fanous (@NotSoVanilla) May 17, 2017

For more from Angelina, follow her on Twitter here.