- Bodies Facebook Group
- Die Trying — The Battle for ALS Treatment, Vice on HBO
- Patagonia: Angelina's journey to the end of the world
- I Traveled to Egypt for a Miracle Cure for My ALS, VICE
- For ALS Patients, A Hopeful Drug That Is Out of Reach, New York Times
- Angelina’s twitter
Full script below:
ALLISON: I’m Allison Behringer and this is Bodies, a show about people solving the mysteries of their bodies.
Head’s up, this episode includes mention of drugs and has some cursing.
This episode is best listened to in a quiet place, with headphones on. And if you want a transcript, you can follow along at KCRW.com/Bodies, or click the link in the show notes.
Ok, here’s our story.
ANGELINA: Hello? Hi. Testing, testing, testing. My name is Angelina Fanous. I am 34 years old.
I live in Cleveland Ohio with my parents, and I’m currently living with ALS.
After I smoke I’m able to speak for longer.
ANGELINA: (Arabic) Mama?
MOM: (Arabic) What?
ANGELINA: My mom helps me smoke weed every night.
MOM: (Arabic) What’s going on here? Is this yesterday’s? Or is this for tonight or what?
ANGELINA: No it’s ok
MOM: (Arabic) It’s all drugs anyway.
ANGELINA: She's this conservative woman from old country. Never in a million years imagined her holding a joint for me.
MOM: (Arabic) Is this good?
ANGELINA: Mm hmm.
ANGELINA: I was living in New York City. I was working for VICE media as a writer and a reporter. I was just enjoying my 20s. Working in media, you're working all day. And then you party.
I was extra comfortable with drugs. I’ve always had a relationship with psychedelic mushrooms.
It really started with my left hand… I was having a lot of trouble typing, turning on my blow dryer, little things.
I was told I have ALS. There was no cure. I didn't get a timeframe of how long I had. But most patients die within 3-5 years. I would lose my ability to walk, talk, live independently.
And that was very scary, and I was like no this is not for me. And I was almost mapping out, like, when I get to a specific point, I’m just going to die with dignity.
My mom wanted me to come home way before ALS. I come from a conservative middle eastern family and they just don't let young unmarried women go galavanting around which is exactly what I did.
I was always getting into arguments with her over moving back home, and I looked at it as a sort of last resort.
I put it off for as long as I could. But eventually I had no choice but to move home.
My brother was driving. He came to pick me up and I got in the passenger seat. On the drive back to my parents' houseI remember thinking about my mom. My mom was happy to have me home. And like, of course she was. I was so angry with her. No mom, you should be mad. Because I'm mad and upset, and, like, coming home signifies that I'm losing a big part of me.
And I was like fuck it, I'm just gonna eat an eighth of mushrooms.
The mushrooms hit right away. The sunset was fiery. The sky was just filled with colors. And as the sun set, all the lights were streaking, so I can see just long strips of light in the darkness. And it was beautiful. And I just, like, couldn't remain angry. I remember just feeling calm. I have someone who loves me. I forgave my mom in that moment.
Hold on let me take a break for a sec. Can I have water and a joint?
ALLISON: We’ll be right back, after these messages.
ALLISON: Ok, we're back with Angelina.
ANGELINA: I’m just dosing with cannabis over here so I can keep talking to you guys. Hold on let me see my voice… yeah it’s better.
I was officially diagnosed with ALS six years ago. As you can imagine, my days aren’t incredibly productive. Even speaking is so much work. We were raised in a society that tells us you're only as good as what you produce. It's hard to overcome that feeling of worthlessness. But over time, I've been a lot kinder to myself. I tell myself often, I love you.
Let's see, what can I do with my hands? Well at this point I can vape and I can masturbate.
I have one of those like old school wand vibrators that kind of looks like a massager and that's what I tell my mom it is. And so when she gives it to me, I'm like, put it on my back, and then, like, I use it on my back as a massager and then eventually I'll turn it down and use it as a vibrator. I don't know what she would do if I was like, yeah, I use this to cum.
My dreams are super precious to me now. I had this one lucid dream… I was dreaming but I was in control. So immediately I started jumping up and down and flailing my arms up and down in the air.
And the first thing that I did was summon a bunch of bodies and have a massive orgy. In the middle of the orgy, while I was still naked, I got up and threw my fist up in the air because I wanted to fly. I guess my imagination is not that wide. All I did was fuck and fly.
I'm not gonna lie, waking up with ALS is the hardest part of my day.
I'm like oh my god dammit, not this shit again.
ANGELINA: Will you take that pillow up?
CAREGIVER: This one? Up or off?
CAREGIVER: Like right here?
I've accepted that in the next five years, I could die. And I've also accepted that in the next five years, there will be a treatment that could make my disease more bearable. I'm ok with both of them.
I saw a trippy light show advertised. I decided that I wanted to drop acid and go. So I went with my cousin and my caregiver. So my caregiver gave me one tab around 6 pm.
So the show is a synchronization of music and lights. And the patterns are changing colors and twirling into other patterns. It’s an escape to a place in your brain that's warm and accepting. All the anger, all the bad emotions are turned off, and I'm in this new accepting environment, even beyond the trip.
ANGELINA: (Arabic) Who called?
MOM: (Arabic) Baba. But I told him that you were sleeping. I didn’t know you were awake.
ANGELINA: Will you put them in the pink vase?
CAREGIVER: Pink one?
ANGELINA: It’s my birthday so…I got flowers for my birthday. Thank you…
DAD Hi Nosa! (Singing) Happy birthday to you, happy birthday to you (kiss.)
ANGELINA: Thank you
DAD: (Arabic) Put this in your account.
ANGELINA:: Oh, thank you
MOM: (Arabic) Have Natalie do it on your phone for you.
ANGELINA: (Arabic) Where’s the money, mama?
MOM: I’m Mama poor. Mama poor! (laughing.)