The Great Beyond full transcript

ALLISON BEHRINGER: I’m Allison Behringer and from KCRW, you’re listening to Bodies. 

Angelina Fanous is slowly losing her voice.

ANGELINA FANOUS: I'll probably lose my voice before I die. That's probably the scariest thing. 

ALLISON: When Angelina was 29, she was diagnosed with ALS. ALS is a progressive neurodegenerative disease that affects your ability to control your muscles. Muscles that help you walk, swallow, and breathe.

After symptoms start, people typically die within 3 to 5 years. Today, Angelina is nearly a decade into living with ALS. She can still get around in a motorized wheelchair, but she’s almost fully paralyzed. And she’s started making preparations for her death while she still can. 

We made an episode with Angelina in 2020 called "Not This Again." When she was first diagnosed, she was working as a journalist in New York City. And the episode is about her coming to terms with having to move back in with her parents, about her love of psychedelics and lucid dreaming. If you haven’t heard that episode, you might wanna go back and listen to that first, but today’s episode can also stand alone.

This episode is about what comes between the moment we're living in now and the moment we take our last breath. Of course, every single one of us is somewhere along that in-between, though most of us do our best not to think about it. For Angelina, she predicts that her last breath will come in the next few years. And so we wanted to hear how she’s approaching the final stages of her life, and how she's thinking about the story she'll leave behind. 

Since our last episode with Angelina, the progression of her disease has made her speech a bit harder to understand. We're asking you to do your best and listen closely – we recommend finding a quiet spot, and using headphones. We've also invited Angelina's sister, Demiana, to support her voice throughout the episode. So if you miss some of Angelina’s words, her sister will help you understand her meaning.

ANGELINA: I can't quite get my sentences out quickly enough, but I can still speak and if you spend enough time with me you'll understand my words. 

I like the idea of my sister reading my words. People often said that we sound alike.

I'll probably lose my voice before I die. That's in the forefront of my mind a little bit more than death. 

I had heard about people writing their own obituary before they died. Like, who is gonna sum up my life better than I can? I kind of have to work myself up to it. So before writing my obituary I would spend a lot of time thinking about what I wanted to say. And almost getting my emotions out before I sit down to write.

Because if my eyes are watering because I’m crying, the Eyegaze device just won't read my eyes. I use Eyegaze, a device that reads my eyes, in order to write. And I can use the keyboard and I look at a letter for half a second and it registers that I want to select that letter. I miss typing with my fingers more than anything, but it's better than nothing.

So in your brain, your emotions are tied to motor nerves. When your motor nerves are inflamed or broken as mine are, your emotions also become broken. And this is called pseudobulbar affect. And it's very common in ALS, MS, Parkinson's, Alzheimer's. So it's easier to make me laugh than most. I can't tell a joke without laughing. 

It's definitely easier to make me cry than most. Crying is honestly one of the worst parts of the disease. 

Recalling memories is so painful and difficult. That I can't even begin writing without crying. Writing, to me, it's like ripping my chest open and letting everything fall out. So what kind of writing would I do, if I can't laugh, I can't cry – I can't put any emotion behind it. 

I started writing my memoir when I could still physically use my phone to type. And then I fell and hit my head. It took months to recover. And when I recovered, I could no longer type. I obviously really miss it. I hope I finish. But, maybe not. I haven't made my peace with not finishing it.

When I get hurt, I can't speak at all. I fell the other day, with the weight of my upper body on my legs. And it was so painful because my muscles are so tight. I was trying to tell my parents to straighten out my legs and I couldn't get the words out.  I couldn't even get out a scream to tell them that I was in pain. 

Those moments really scare me about how it will be when my speech goes away. 

ALLISON: We’ll be right back after these messages.

ANGELINA: Having my body decline so quickly, I've experienced death in a very unique way. Having little pieces of my body essentially die, one piece at a time. But I always thought, I'm not dead, I'm not dying, my life is just changing.

I used to be more scared of paralysis than death. But here I am, fully paralyzed. But I've managed to etch out a life that works for me. I can have this conversation with you, I can taste some of my mothers cooking, I can breathe on my own,I can get on my flight and go somewhere. 

An obituary is difficult because you have to sum up your whole life and what made it meaningful. We're more than our happy moments or our achievements, or even our best relationships. We're a nuanced complex being with lives that have ups and downs, and it's really difficult to sum that up in a one page obituary. 

I wanted my goodbye to be hopeful and a celebration. Last night, I started writing my obituary. I’ll read a little bit to you. It goes like this:

I regret to inform you of my death. Especially like this. 

In an announcement that will probably show up on your newsfeed somewhere between vacation photos and angry political rants. It's also regretful because I really loved life. I saw it as one big adventure and dove headfirst into it.

From a young age, I fantasized about being a face in the crowds of big cities. So even though I didn't have a friend to go with me, I studied abroad in London. I always traveled as much as I could.

Jumping off waterfalls in the Caribbean and swimming with tiger sharks in the Pacific. I was even lucky enough to travel for work, reporting from Egypt and Lebanon. I thought my adventures were over a couple of years after I was diagnosed with ALS.

I figured traveling with a wheelchair meant homogenized all-inclusive resorts and buffet fare. But I quickly learned the right wheelchair will take you anywhere a pair of legs can.

That's all I have so far.

My parents are still praying for a miracle that I get better. And I wanna tell them it's alright, like, it's okay. I feel like most people run away from death. I've had enough time preparing.

I want my body to naturally return to the earth in a simple wooden casket. No embalming, no chemicals, nothing fancy. I wanna be buried with a tree. I was thinking a cherry tree because the flowers that bloom on that are very pretty. I'll have a little plaque that says my name and a line about how much I loved butter.

I'll write a farewell tweet that I'll have my sister tweet out.

Something sarcastic, like, "Tweeting from the beyond, one religion definitely got it right, but I won't tell you which one." 

I do wonder if, when you die, you really end up dreaming for eternity? I like dreaming, so I'm really okay with death. 

I feel like I've done enough drugs to welcome the great beyond.

ALLISON: Since our last time speaking with Angelina, she’s continued to write her obituary. Here’s how the final part goes: 

“The people in my life are what made the biggest difference: my parents managed my daily care at home, my friends and sister met me at any destination I desired, and my hardworking caregivers wheeled my crippled ass around the world.”

The recordings for this episode were done over the course of many months. Producer Hannah Harris Green visited Angelina in Ohio and we also spoke with Angelina over Zoom, with the recordings supported by Angelina’s caregiver, Erica Mosely. You heard Angelina’s sister, Demiana Fanous, speaking Angelina’s words. 

David Copeland, a death doula based in Ohio helped us to facilitate one of the recording sessions. For more info about this episode, go to KCRW.com/Bodies. You’ll find resources and support groups for people with ALS. As always, you’ll also find a transcript of this episode and a link to the Bodies facebook group, where you can share your own story and find support for whatever you’re going through. You can follow Bodies on Twitter and instagram at @bodiespodcast. And if you like Bodies, we hope you’ll write us an Apple Podcasts review!

This episode was produced by me, Allison Behringer and Hannah Harris Green. Our story editor is Mira Burt-Wintonick. Additional story editing and advising by Cassius Adair, Sharon Mashihi, Caitlin Pierce and Lila Hassan. Transcription help from Nisha Venkat. Special thanks to Camila Kerwin, KalaLea, and Kristen Lepore. And thank you to all the friends and family who gave us feedback on this episode. Original score by Hannis Brown. Mixing by Nick Lampone. Theme music and credit music by Dara Hirsch. Episode art by Neka King. Cover art by Sarah Bachman. Bodies is supported and distributed by KCRW. Our executive producer at KCRW is Gina Delvac. Thank you to the whole KCRW team. I’m Allison Behringer, host and executive producer of Bodies. Thanks for listening. See you next week.