Jason Romero was given a serious diagnosis. But to stop running from it, he’d have to do something no one had ever done before.
Artwork by Lyne Lucien.
Released on July 4, 2023.
Transcript
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Kamilah Kashanie (KK): When Jason Romero was 13, a school nurse noticed he couldn’t read to the end of a seeing eye chart. That landed him in a doctor’s office…
Jason Romero (JR): I was sitting with my mom and an eye doctor, and he looked at these tests, and then he just blurts out, ‘You’re going blind’.
KK: The doctor told Jason he had a rare eye disease, called Retinitis Pigmentosa – which meant that as he got older, the scope of his eyesight would shrink and dim around the edges, limiting his vision into a narrow tunnel…and that tunnel would get smaller… and smaller…until one day, it would disappear.
JR: And then he asked me some other questions about what I wanted to do with my life. And I said, I want to be a doctor lawyer, because to me, that was the epitome of being a success. And he told me to forget about it. It was something that was really hard for me to hear because I had this stranger telling me that… I probably wasn’t going to amount to anything. And then he told me that there were like 5 minutes before his next appointment. And then we left and then… I guess I really didn’t know how to feel.
That was when I was 14. And until I turned 44, I never openly told people I was going blind. I had shame about having this disability. And I just didn’t want anybody to know that I was…that I was different.
KK: Jason decided to keep his condition a secret from most of the outside world… but that would have consequences… not just for him but for his family…
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And learning to live with the truth… would take him across the country… on foot.
It’s the StoryCorps Podcast from NPR. I’m Kamilah Kashanie.
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KK: What scared Jason the most was the doctor telling him that he wouldn’t ever have the life he wanted…so…he did everything he could to stop that prediction from coming true…
JR: In my teenage years, we would be in class. And the teachers would say, ‘Okay, everybody open up your books and we’re going to read for 30 minutes.’ So everybody would flip the page and I’d flip the page too. but I couldn’t see the books. so I pretended to read.
After school was over and I did sports and all that stuff, I would come home and my mom had got me like a lot of lamps on this desk. I’d like four lamps from each corner. And I put the book down on the desk and I’d have a magnifying glass. With that, I was able to, you know, see the book. And that’s how I got through high school. That’s actually how I ended up getting through college. And I graduated law school and I passed the bar exam.
KK: After law school, he got married and started working as a lawyer…. Still doing whatever he needed to keep up appearances… And it was working, so he kept going with it.
Then he had three kids…. And he wasn’t just responsible for himself anymore…
Here he is with his oldest daughter, Sierra…
SR: I kinda knew? But I just thought it was like the typical bad vision and the typical, like, why you would need glasses, I guess. I didn’t think there was anything, like, beyond that.
JR: I used to try to read you guys nighttime stories.
SR: I remember the Dracuna sisters.
JR: The Dracuna Sisters. But that was a made up story because I couldn’t see the words on the page. So I gave up trying to read you guys stories and I started making them up.
JR: When did you realize it was a very serious situation for me?
SR: We were biking to the grocery store. And as we were coming back, we had the bags balanced on the handlebars. And I remember like, we were kind of turning into the driveway. And um you missed the curb, Like, you didn’t see it at all and you, like, flipped over on your bike and like, the milk went flying and, spilling everywhere. It was such a big crash and I really didn’t get, like, I was like, how did you miss the curb? it’s still light out. Like, you know… it was like the first time that it actually caught me off guard, where I was like, ‘Oh. He didn’t see that.’
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KK: Riding a bike is one thing, but as his vision faded, he kept driving…
JR: I would use all my other senses and I would devise these strategies about how not to get figured out. If I was required to drive somebody, I would drive the route the day before so that I would go to pick this person up, and I would know exactly where I was taking them. Because I couldn’t see street signs. And I just couldn’t miss a turn, because I couldn’t have them ask me, ‘Oh, well what street sign are we looking for?’ Because they would know I couldn’t see.
KK: Now I know that might sound incredibly irresponsible…
But Jason had truly convinced himself he was fine. Thirty years deep into living a lie, It’s hard to just turn that around. But in 2014, something happened.
JR: There was a moment with my eyesight when things definitely changed. I was driving, and I was at a stop sign. And I looked both ways to make sure nobody was coming into the crosswalk. And I took my foot off of the brake and you know, started inching forward. And a family of four ran in front of my jeep. And I slammed on the brakes and I didn’t hit them. But, It was like my whole world caved in. Because I knew at that point, my eyes, they had degraded.
And in that moment, I realized It’s here. I can’t. I can’t fake it anymore. I can’t lie to myself anymore.
KK: But after decades inside this lie, Jason didn’t know who he was outside of it. And the hits kept on coming… His marriage had fallen apart, he lost his job… the life he worked so hard to build was slowly crumbling…
And by this time, his children were a little older, and they could tell something was different…
JR: I always wonder what your guys’ experience was like when I was in that tough time. Because I really don’t remember it. All I remember is like being in bed and all I think about is like, I know you guys were coming over the house half the time. But I don’t think I was doing anything with you. I was just like I don’t even remember how you guys got fed. I don’t remember any of that.
SR: That’s when I learned about the grocery store. That’s when I got to go and try my hand at shopping, I guess, but… The house just felt quieter. You know, I just remember like, I would come home from school or whatever, and I would just go like, do homework and eat dinner and that’d be kind of it.
You would like snap, and it was over such small things. I remember it was oh, I didn’t take out the trash or things like that.
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JR: But you’re absolutely correct. I was snappy and I… I was angry, and I was projecting. And it wasn’t you guys. It was me. And… As I look back at it, I realize that anger was also secondary to fear. And sadness and emptiness. And I didn’t know how to deal with it.
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KK: There was at least one person who knew about Jason’s secret… Someone who had been there from the moment of his diagnosis at the doctor’s office: His mom, Cindy.
JR: Do you remember when we walked into the parking lot?
Cindy: Yes.
Jason: That was the first time in my life I remember seeing you cry.
Cindy: Yeah. I was very upset. But trying to hold it together for you.
JR: You know, seeing you in a state where you felt helpless…to my 14 year old mind…you know, since I was two years old, It was just you raising us. You were cutting the grass, y’know, making money…You were impenetrable. And this was the first time ever that I’d seen a crack.
KK: Cindy did her best to hold it together for Jason when he was a kid… And 30 years later, she had to do it again.
CE: I can remember sitting on your front steps one day and you said, ‘Mom, I don’t know what I’m going to do. I lost my job. I’m getting a divorce, I’m losing my eyesight. I don’t know how I’m going to keep the house.’ And that was probably the most devastating day of my life when I went home that day.
JR: You suggested that I needed to go see somebody and asked if I would go see a psychologist.
The first meeting I had with him, he asked me a series of ten questions, which I guess was a checklist for depression. I think I answered yes to all of them….
KK: They went through treatment options… And there was one suggestion that stood out…
TEASE:
JR: What else can I do? And he said, you can exercise four times a day…
KK: Exercise four times a day…that sounds like a lot, but it’s nothing close to what Jason would actually do…
When we come back… With his mother’s help… Jason finds a way to stop running from his diagnosis… by doing something no one had ever done before.
Stay with us.
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KK: Jason always liked to run, but it had been casual exercise. With no job, he had a lot of time on his hands. So he started running every day. And running every day turned into local races. And local races turned into marathons.
JR: It was hard. It hurt, it was uncomfortable, I would chafe, I’d get blisters. There was just all these horrible things that were associated with it, but I knew it was fun. And little by little, it’s like my body goes on autopilot. I felt powerful, free, alive, grateful. And it’s just… me.
KK: Running when your eyesight is disappearing might seem counterintuitive. But growing up, Jason knew someone who had also made some unconventional choices.
JR: I’d say the person that made me think that crazy running was possible was a step-uncle. He used to be a lawyer. And at age 50, he decided, ‘I’m not going to be a lawyer. I don’t like this. I’m going to become an endurance athlete. But he went off and all of a sudden he started doing these— what people call crazy — things… Like, he ran across Siberia and he would run from the mountains to Denver.
And that was a huge inspiration for me to truly believe we, y’know, we can do extraordinary things, I mean… And It was just incredible.
KK: Jason followed his uncle’s example… and he decided to do something outrageous.
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JR: Do you remember the moment when I told you I was going to run across America?
CE: I thought you were nuts, but I remember telling you, ‘Yeah, I’m in.’
KK: If Jason succeeded… he would become the first legally blind person to run across the country.
But there was no way he could do it alone… So he asked the one person he knew he could depend on: His mom.
Their plan was ambitious. They would start at the Santa Monica pier in Los Angeles on March 24, 2016 and finish at New York City Hall in lower Manhattan.
Jason would run anywhere from 9 to 16 hours …every… day.
Sometimes Cindy would follow behind him in her car at a snail’s pace… But most of the time, she’d drive a few miles ahead of him, waiting by the road at certain points to give him food and water.
She was the cook, the driver, the trainer, and sometimes… the doctor.
CE: Your foot went out and I had to snap it back into place.
The foot was dislocated. And so we called your chiropractor and he says, ‘Oh, it’s you just put your hand here and here and pull, quick’. And I didn’t want to do it, but I did it and it worked.
KK: When you’re running for ten hours a day, you have a lot of time to think.
And Jason thought a lot about his kids. His youngest daughter, Sofia, was thinking about him too.
JR: There was a lot of time for self-reflection. And I started going through my life and replaying it. But you called me every single day, like you promised you would.
SoR: [laughs] Yes.
JR: I don’t know why you chose to do that, but it was really important to me. Why did you choose to call me every single day?
SoR: Because I missed you, and… That was really it. I just like, ‘I wanna talk to my dad.’
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KK: After running 51 miles a day, for almost 2 months… over 3,000 miles, Jason and Cindy reached New York City.
There was no way Cindy was going to be able to follow Jason in her car, through New York traffic. So she drove ahead to the finish line at City Hall… and waited.
CE: The whole race. I knew where you were. I ended up just waiting for you to come in. It got dark. Uh. You had a guide. There was one little part of me that was kinda sad it was over. But I was really worried about you.
JR: The final block I remember, I had no clue where I was at because I didn’t have a headlamp. And I remember I screamed, ‘Mom’. And then I heard you say, ‘Jay.’
CE: That was a moving moment for both of us, I think. It was just a culmination, and that was something we worked together on and worked hard at.
JR: We hugged. There was a collision of emotions, of being exhausted, exhilarated, sad… And then after our hug finished, we kind of let each other go. And then I realized there were other people there then. And I remember I sat on a bench and I felt content. And I don’t know if I have ever had that peace before in my life.
KK: And then he went home.
SoR: Was it hard to be away from us for so long?
JR: Hard is not a strong enough word to describe it. It was like my heart had been ripped out, and … I just didn’t want to leave you guys.
But you guys have given me the grace to be able to do what I’ve needed to keep myself healthy and sane, and happy.
KK: His daughter Sierra noticed the ways the run had changed him…
SR: I remember you were just like, exhausted and physically beat up pretty much. You had some gray hair, you had a broken tooth. You were like, really tiny.
JR: I look pretty wrecked.
SR: Yeah, you looked like, you know, the world laid some beatings on you.
JR: It did.
SR: But, like, something was just restored in you. But it wasn’t like you were a whole different person. It just felt like this fundamental element of who you are, like, came back. Like a curiosity for what life has to offer.
There’s, like, a lot more patience in our relationship now I’d say.
JR: I… feel guilty a lot of times. Because I used to take you guys camping and we’d go up to the mountains or we’d just do stuff. And when that stopped… I always worried because I had you guys half the time and all I kept thinking was… these kids aren’t going to want to be with me if I can’t. And I just want to say I’m sorry if it impacted you negatively.
SR: Oh, no. When I look back on those times, like, I don’t think I ever held that against you at all. The activities we did, like, it just changed. It just shifted. Maybe we didn’t go to the mountains as often, but like, we’d still make a trip up if Nana was around or we’d find a way. I don’t know. You don’t have to worry about that, I guess, is what I’m saying.
JR: I didn’t want you to feel like there was a problem with your dad, or he was defective in some way. That was an insecurity on my part. And I had to go through the run across the U.S. and the depression and all that stuff to come out and understand that,
Any issue I have doesn’t change my being a parent. It just enriches the relationship. And to me, that’s my most important role in life, is to… to be a good father.
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JR: My eyesight will continue to deteriorate where the retina dies and there is no light perception.
I can’t pretend like it’s not real anymore. ‘Cause I pretended like it wasn’t real, for until I was 44. And now for the last nine years, I’ve had to accept that this is the reality, and…. I’m okay.
KK: That’s all for this episode of the StoryCorps Podcast…
It was produced by Max Jungreis who is our Associate Producer, and Stefan Weiner. It was edited by Eleanor Vassili, who is our Senior Producer. Our technical director is Jarrett Floyd. Our fact-checker is Erica Anderson. Michael Garofalo is our Executive Producer. And Jasmyn Morris is our Story Consultant.
To see what music we used in the episode… go to StoryCorps – dot – org… where you can also check out original artwork created for this season by artist Lyne Lucien.
For the StoryCorps podcast, I’m Kamilah Kashanie. Catch you next week.