In science, we’re constantly learning, adapting and evolving. In this week’s episode, both of our storytellers need to reckon with a new normal.

Part 1: After a neurological disorder leaves Tracey Starin visually impaired, she struggles to fill the void of her love for reading.

Tracey Starin is a writer and storyteller from Queens, NY. She has performed on actual and virtual stages in Boston, San Diego, Chicago, Toronto, and all over New York City. Tracey has appeared on numerous podcasts, including RISK!, Love Hurts, and The Volume Knob, as well as Stories from the Stage for World Channel. Tracey is the co-producer of the storytelling series Food for Thought for the National Storytelling Network. She also co-hosts a monthly storytelling show at Pine Box Rock Shop in Brooklyn called Just One More Thing.

Part 2: At first comedian Ayanna Dookie doesn’t take her Lupus diagnosis seriously.

Ayanna Dookie is a stand-up comedian based in Brooklyn, New York. She is the 2014 winner of The She Devil Comedy Festival. She also earned a spot in the semi-finals of NBC’s Stand-Up for Diversity and a finalist in the New York Underground Comedy Festival Emerging Comics Competition. She has appeared on Comcast-on-Demand, is currently a cast member on Fox's Laughs, and has been featured in the New York Post, Health Magazine, and the Lifetime Network.

Episode Transcript

Part 1

I was discharged from the hospital. For six weeks, I'd been treated for a neurological disorder that left me vision impaired. Once I left the hospital, I would need to see a neurologist. I would need to get regular blood tests and I would need to go to an eye clinic. It was going to be a lot.

But I only had one thing on my mind. How was I going to be able to read? I had lost enough vision that I could no longer comfortably read, and I love to read. I loved to read. I was that kid who, hours after my bedtime, was hiding under the covers with a flashlight and a book. I won gold medals in the Reading Olympics when I was in elementary school. I used to hide a book in my lap under my desk in elementary school and read while my teacher was talking. I read piles of novels and stacks of magazines, any magazine. Fashion magazines, cooking magazines, entertainment magazines. I was a manicurist for a while and I had piles of magazines devoted to nail care and design.

Then when the internet became part of my life, I started every day by scanning world news, local news, entertainment news. It was how I stayed part of the conversation. It was how I stayed in the loop and I didn't know how that was going to happen now.

Being suddenly visually impaired, being suddenly disabled was already making me feel detached from things. Friends and family didn't really know what to do with me. They're already talking about me and around me and behind me instead of talking to me. And I didn't know how I was going to be part of things if I couldn't read. Reading was how I learned things.

When I was a little kid, my recurring nightmare was that I was going to come home from school one day and my family would have moved away and left me by myself with no forwarding address. I felt like without being able to read, this is what my life was going to be like. Everyone was going to move ahead and I was going to be stuck behind.

But I remembered something that I heard George Costanza say on Seinfeld. Was it possible that there was a library that could get me any book on tape? The patient advocate didn't know. She told me to check with some of the advocacy groups once I got out of the hospital.

So I called the New York State Commission for the Blind where I found a very snippy man who didn't know anything about the books on tape. He told me to check with some of the advocacy groups.

So I called Lighthouse International, and what they mostly did was put me on hold but they didn't tell me about the books on tape either.

So while I sought out these books on tape, I went to my local library and I checked out all the audio books they had on CD, which was one small shelf. It was great but I needed more. I know you're wondering why I didn't just Google it. But believe it or not, in 2006, everything in the world wasn't just available on Google.

Eventually, I came across a group called Visions and I talked to a woman who had lost her eyesight as an adult like me. She was very generous with both time and resources and she told me about the Andrew Heiskell Braille and Talking Book Library right here in New York City. It was like the door to a secret world had opened up. You know that part in Wizard of Oz when everything goes from black and white to color? That's what my world was like.

Tracey Starin shares her story at The Tank Theater in New York, NY in October, 2021. Photo by Zhen Qin.

All I had to do was call them with the name of an author or the title of a book and, if they had it, they would mail it to my house on cassette tapes that I could play in a player that they also provided. It was this big, beige, plastic behemoth of a player, something that you would see in a 1970s classroom with large, easy to find, easy to use buttons for Play and Fast Forward and Rewind and Eject.

They didn't have things that were especially new because it took like six months to a year for them to get stuff in and they didn't have things that were very geared towards pop culture. So if I guiltily went looking for the latest celebrity tell all, they probably wouldn't have that.

But they had all the classics and I thought this is a good time to renew my status as an English major. So I started to reread books that I hadn't read since college and, in some cases, even high school. I read Pride and Prejudice and Middle March and Ethan Fromm and I was almost overwhelmed with how wonderful this was. I was home alone recovering from an illness and it gave me something to do. It gave me something to think about besides medicine and doctors and appointments.

And it gave me something to talk to people about, although people are funny. They don't mean to be hostile. They don't mean to be ableist, but to this day when I mention a book that I've read, somebody will always make sure to point out, “Well, you didn't read it, though. You listened to it, right?”

Yes. Yes, I listened to it. And thank you so much for making that distinction for me. I've even had people say that listening doesn't count as reading. And it's kind of funny to me because a lot of the technology that cited people really enjoy, like Siri and Alexa, is based in assistive technology that started out for the blind. But people are funny.

I was really overwhelmed with how wonderful all this was for a while. But then even the extraordinary starts to feel mundane. And after some time, I started to feel almost restricted by being tethered to this big, plastic player and my home computer, especially since the rest of the world was going handheld because the iPhone had been introduced.

A picture of the cassette player Tracey Starin used to listen to books after she lost her eyesight. Photo courtesy of Tracey Starin.

I didn't think an iPhone could ever be part of my life. First of all, I wasn't working and I couldn't afford those kind of payments every month. Also, it was that little tiny screen with that little teeny touch keyboard. It seemed logistically impossible. The future was here and I wasn't invited. I was stuck in a Flintstones past while everybody else was headed to a Jetson's future.

I was barely past 30 and already I felt like somebody's doddering old Auntie. “What's an app? What's an emoji?”

But then I talked to my friend Peter who works for Apple and he told me that all Apple products are accessible. And just by engaging these settings for the vision impaired, I can customize it so that I could use it.

He also told me about the iPod Touch, which does everything iPhone does except make phone calls and it is dependent on Wi-Fi so there is no monthly bill. And just like that, I was in the loop again. I was part of the same conversation as everybody else. I could scroll through my social media accounts without being tethered to my home computer. I could look up things on Wikipedia. I could study a language on Duolingo.

And then there were these podcasts, a whole platform that was audio based and their popularity was on the rise. I loved podcasts. I listened to tons of podcasts. It was like somebody had invented an entire form of entertainment in response to me going blind. Now, I was more in the loop than some of my sighted friends. I've even been on podcasts.

Sometimes I listen to something funny, like Doug Loves Movies. Sometimes it's like journalistic True Crime, like Serial. Sometimes it's in depth interviews like WTF with Marc Maron. I loved podcasts.

And then my friend gave me her Audible password and I got to listen to all the books that she had bought, but these weren't like the talking books that I was used to. These were audiobooks elevated to a new art form, like fully produced radio plays, sounds immersive experiences that I could lose myself in for hours.

But Audible books are a little bit expensive and there's no such thing as waiting a year till it comes out in paperback for $7.99, but then I found out about this app called Libby that allows me to take digital books out from my local library. And after two weeks, they just disappear off my digital shelf. I don't even have to worry about returning them.

Nothing's ever going to replace the feeling of a book in my hand, the crispness of a page turning between my fingers, getting lost in the stacks of my library or poking around a used bookstore looking for hidden gems, pulling off the shelf every novel that fits my mood at the time. That's gone to me now. I wouldn't necessarily have chosen this but I think this is the best time so far to be blind, because there's an ever changing world of technology that's helping to keep me in the loop.

Thanks.

Part 2

The worst thing about having lupus is no one knows what the hell it is. In fact, when I was diagnosed with lupus, I didn't know what the hell it was. The only thing I knew about lupus is Toni Braxton has it and I was like, “Well, that bitch looks good so we gonna be all right.” Which is not how you're supposed to judge a disease.

Now, another thing is when I got diagnosed, I found out via email. My doctor sent me an email that said, “Miss Dookie, you have lupus. I've enclosed the name of a rheumatologist. Please call them setting up appointment. Take care.” Take motherfucking care.

Now, in college, one of my best friends got chlamydia and you know what else she got? A phone call. So I just assumed that lupus can't possibly be that serious if I'm finding out via email. Chlamydia must be way more serious than lupus.

Ayanna Dookie shares her story at Caveat in New York, NY in December 2022. Photo by Zhen Qin.

So I go to my first rheumatology appointment and my doctor starts asking me if I'm experiencing these symptoms which start to poke holes in my theory that chlamydia lupus. The first thing is, “Are you sensitive to sunlight? Are you experiencing extreme fatigue during the day?”

And I was like, “Am I turning into a vampire because this seems very vampire esque? And if I am, are we talking like Twilight or like Blade? Because that's very important to know.”

More questions. “Are you experiencing hair loss or thinning? Do you have sores in your nose or mouth? Are you having a hard time breathing?”

No. No. No.

“All right. Well, you're gonna have to take these medications for the rest of your life.” By these, she gave me one at that point. She gave me hydroxychloroquine, street name is Plaquenil. You guys might have heard about it. People assume that it cured COVID.

I'm not here to tell you but I will tell you that I had COVID twice and I've been on hydroxychloroquine for 10 years. Science.

So this woman tells me that there's no cure for lupus and I will be taking this drug for the rest of my life. The rest of my life. I am 31 years old at this point. The rest of my life seems like a really long ass time.

A picture of Ayanna when she drove herself to the ER. Photo courtesy of Ayanna Dookie.

I'm also confused because I'm like, “There has to be some other way to do this. I can't possibly see myself taking this,” because, again, I don't think lupus is that serious based on the information I have right now. “Is there anything else we can explore? Like can I change my diet? Are there any herbs I can take? Can we can we ask Toni Braxton? She seemed to figure that out? Have you seen her? She looks really good. Maybe we can set up a call.”

And my doctor was like, “Your diet has nothing to do with it.” That was a lie. “You're gonna have to take these drugs and I don't know who Toni Braxton is.” And the last part is when I should have just found another doctor.

So I leave with these drugs. I'm upset and I'm confused because, again, I'm thinking chlamydia lupus. And then I remember when my best friend got chlamydia, they gave her like antibiotics and she took that for like a week and then she was back on the streets hoeing.

So I'm like, okay, my theory is more holes are developing in this. And the last time I spoke to her, I didn't hear her talking about taking her daily chlamydia meds so I was like I think she's done with the chlamydia. How am I having to take this every day and there's no cure?

Four days after this doctor's appointment, I think I'm fine. Four days later, I start having flu like symptoms. But unlike the flu, within two hours I went from feeling completely normal to just complete body aches, crippling fatigue, could not do anything.

I went to sleep, woke up next morning I have arthritis from my jaw to the bottom of my feet. Just extremely painful. At this point, I didn't know that 31 year olds could get arthritis. I thought it was just something old people got, but here I was. So that whole day I spent just fluctuating between being in pain and sleeping, being in pain, sleeping, being in pain, sleeping and I just figured I would just sleep it off and, just as quickly as it came on, I'll just wake up tomorrow morning and it will be gone as well.

I woke up the next morning, it was still there.

So I called my rheumatologist and she is not at all surprised at what happened, which also scared me. She prescribes prednisone, which now I call magical poison, at that time. I love that this crowd knows. At that time, I didn't know what it was.

My boyfriend at the time, he comes over to pick me up to take me to the pharmacy. He looks at me and he tells me that he's afraid to touch me because I look so fragile at this point. We go to the pharmacy, we get my prescription, we come back and I'm standing in my kitchen. And now, over the course of less than a week, I've gone from being perfectly healthy to now staring at two prescription drugs.

And when I say perfectly healthy, at that point I had lost 65 pounds with Weight Watchers the year before. Not only that, I was working for Weight Watchers as a meeting room leader, helping other people lose weight. I've got into great shape. I'd ran Tough Mudder. I went vegan and I wasn't just any old regular vegan. I was them annoying ass vegans. I was one of them vegans that tell you that you're going to die if you eat cheese. Like that kind of a vegan. So I just couldn't understand how I went from this person that was doing everything right to this person that is now on not one but two drugs with this incurable disease. What is happening?

I start taking those drugs and within 30 minutes the prednisone kicks in and as if nothing happened. I'm like what is this sorcery?

Later on, I realized, I learned because I started to Google, that prednisone is a steroid that is commonly used to treat inflammation. Some of the unsavory side effects are weight gain and basically fucks up your bones. I am still currently dealing with prednisone weight gain because off and on throughout my career of lupus I've had to take it.

I decide at this point that, oh, I got a real ass disease. I should probably call my friends and family and let them know. So I started making the calls and one of my friends, when I tell her, she says, “Well, at least it's not cancer.”

I know she was trying to have a look on the brighter side type sentiment so I didn't ding her for that because I was thinking that chlamydia was, you know. They didn't know what the hell it was either. So I was like, “Sure.”

But as I've lived with lupus, that whole ‘at least it's not cancer’ sentiment has haunted me throughout my journey. Because the thing about lupus is it's ongoing. There's no start and stop. When I'm going through a flare, people tell me, “I hope you feel better.” I literally want to scream, “I'm never gonna get better. Like this is it. It's just ups and downs. It's a constant day to day managing. I'm never going to be a lupus survivor. I'm always going to be a lupus warrior.”

It's very hard to explain that to people because a lot of times people have a hard time understanding, especially because I look fine, that I'm chronically ill. Lupus is what's called an invisible disease and an invisible disability. So even times when I'm sitting on the train because I'm experiencing a flare where my lungs are hurting or they're inflamed or my hands are aching or my knees ache, there are times where people have come up to me and asked me to give my seat up for an old person and I’ve said no. Depending on the day, I might offer a reason but I don't feel the need to because, again, that's part of having an invisible disease. That's my right.

So having lupus for 10 years, I'm currently on a lot more drugs now than hydroxychloroquine, unfortunately. I now also take immunosuppressants, which are actually low dose chemo drugs, so it isn't cancer but we have some things in common. And every month, I have to go to the hospital and have infusions.

It's annoying when people look at me and they tell me, “Oh, you're so strong,” because I don't really have a choice. But I am grateful that over the 10 years that I've lived with this cruel mystery, as we call it in the community, that all of my organs are functional. That is something I think about every day because I know so many warriors that don't have that luxury.

Since this is something that I'm constantly going with, dealing with, I don't have an end to my lupus journey, which is one of the hardest things for me to come up with a story, because stories are always supposed to have a begin and middle and end and we're just up in this. It's like how do I end this?

So I think about when I first was diagnosed and I think about Toni Braxton and I think about all these views of what I have about lupus and that's my goal always. I'm a lupus advocate as well. I remember years ago when I used to lead Weight Watcher meetings and had a member stay after a meeting. She came to me because she was having issues with her weight loss progress. She was very frustrated.

She says, “It's very hard for me to lose weight because I have this disease called lupus.” I got excited in a weird way because I was like, “Ah, I got this. I got this. I'm gonna be able to connect with this woman. You are me. I am you. I see you, sister.”

So I said, “I also have lupus.”

She looked at me. She looked me up and down just disgusted and she goes, “Well, you don't have the kind of lupus I have.” And for the first time in my life I was like, “Maybe I do got that Toni Braxton brand of lupus ‘cause bitch was looking okay.”

You guys have been great. My name is Ayanna Dookie. Thank you so much.