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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.
I was sitting with my mom and an eye doctor and he looked at these tests and then he just
blurted out, you're going blind.
The doctor told Jason that 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 to a narrow tunnel.
And that tunnel would get smaller and smaller until one day it would disappear.
Then he asked me some other questions about what I wanted to do with my life and they said
I wanted 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 mount anything.
And then he told me that there were like five minutes before
his next appointment.
And that was when I was 14 and until I turned 44, I never openly told people there's going blind.
I had shame about having a disability.
I just didn't want anybody to know that I was different.
Jason decided to keep his condition a secret and that would have consequences.
Not just for him, but for his family.
And learning to live with the truth would take him across the country on foot.
It's the Storycore Podcast from NPR.
I'm Camila Cachani.
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.
In my teenage years, we would be in class and the teacher would say, okay,
everybody open up your books and we're going to read for 30 minutes.
So everybody had flipped the page and I'd flipped the page too.
And I couldn't see the book.
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 gotten me like a lot of lamps on this desk.
I had like four lamps from each corner and then I put the book down on the desk and I have a
magnifying glass.
With that, I was able to 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.
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.
I kind of knew that but I just thought it was like bad vision and the typical like,
like why you need glasses, I guess.
I didn't think there was anything like beyond that.
I used to try to read you guys nighttime stories.
I remember the jackkunas sisters.
The jackkunas 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.
When did you realize it was a very serious situation for me?
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 you missed the curb, you didn't see it at all and you like flipped over on your bike,
the milk went flying, spilling everywhere.
It was such a big crash and I really didn't get like I was like, how did he 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.
Riding a bike is one thing.
But as his vision faded, he kept driving.
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 help them ask me, oh well, what street
sign are we looking for because they would know I couldn't see.
Now I know that might sound incredibly irresponsible,
but Jason had truly convinced himself he was fine.
30 years deep into living a lie, it's hard to just turn that around.
But in 2014, something happened.
There was a moment with my eyesight when things definitely changed.
I was driving and I was at a stop sign and I had looked both ways to make sure nobody was coming
into the crosswalk and I took my foot off of the brake and 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 fake it anymore.
I can't lie to myself anymore.
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.
I always wondered what your guy's experience was like when I was in that tough time.
Because I really don't remember it. I remember it as being in bed and all I think about is
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 remember how you guys got fed. I don't remember any of that.
That's when I learned about the grocery store. That's when I got to go and like
try out my hand at shopping, I guess. But the house just felt quieter.
You know, I just remember 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.
He would like snap and it was over like such small things. I just remember like, oh, I didn't take out the trash or
things like that.
You're absolutely correct. I was snappy and 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.
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.
Do you remember when we walked into the parking lot? Yes.
That was the first time in my life I remember seeing you cry.
I was very upset but trying to hold it together for you.
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, you know, making money.
You were impenetrable and this was the first time ever that I'd seen a crack.
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.
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 many keep the house.
And that was probably the most devastating day of my life when I went home that day.
You suggested that I needed to go see somebody and ask if I would go see a psychologist.
The first meeting I had with him, he asked me a series of 10 questions,
which I guess was a checklist for depression.
I think I answered yes to all of them.
They went through treatment options and there was one suggestion that stood out.
What else can I do?
And he said, you can exercise four times a day.
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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Jason always liked to run, but 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.
It was hard.
It hurt.
It was uncomfortable.
I would shave.
I'd get blisters.
There was just all these horrible things that were associated with it,
but I knew that 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.
Running when your eyesight is disappearing might seem counterintuitive.
But growing up, Jason knew someone who had also made some unconventional choices.
I'd say the person that made me think that crazy running was possible was a step uncle.
He used to be a lawyer.
In age 50, he decided, I'm not going to be a lawyer, more 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 what people call crazy things.
Like he ran across Siberia and he'd run from the mountains to Denver.
That was a huge inspiration for me to truly believe that we can do extraordinary things.
And it was just incredible.
Jason followed his uncle's example.
And he decided to do something outrageous.
Do you remember the moment when I told you I was going to run across America?
I thought you were not.
But I remember telling you, I'm in.
If Jason succeeded, he'd 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 nine to 16 hours.
Every day.
Sometimes Cindy would have followed 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.
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 easy. You just put your hand here and here and pull quick.
And I didn't want to do it, but I did it.
It worked.
When you're running for 10 hours a day, you have a lot of time to think.
And Jason thought a lot about his kids.
His youngest daughter, Sophia, was thinking about him too.
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.
Yes.
Yes.
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?
Because I missed you.
And that was really it.
I just like, I want to talk to my dad.
After running 51 miles a day for almost two 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.
The whole race, I knew where you were.
I ended up just waiting for you to come in.
It got dark.
You had the guide.
There was one little part of me that was kind of sad.
It was over.
But I was really worried about you.
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.
Yeah, it was a moving moment for both of us, I think.
It was just a culmination.
They had something we'd worked together on and worked hard at.
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 I realized there were other people there then.
And I remember I sat on a bench and I felt content.
I don't know if I've ever had that peace before my life.
And then he went home.
Was it hard to be away from us for so long?
Hard is not a strong enough word to describe it.
It was like my heart had been ripped out.
And I 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.
His daughter, Sierra, noticed the ways the run had changed him.
I remember you were just exhausted and physically beat up pretty much.
You had some gray hair, you had a broken tooth.
You were like really tiny.
I looked pretty wrecked.
Yeah, you look like the world laid some beatings on you.
It did.
But 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 came back,
like a curiosity for what life has to offer.
There's a lot more patience in our relationship now, I'd say.
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 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.
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 off if NANO 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 was saying.
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 US 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 be a good father.
My eyesight will continue to deteriorate where the retina dies and there's no light perception.
I can't pretend like it's not real anymore because 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.
That's all for this episode of The Story for Podcast.
It was produced by Max Young Rice,
is our associate producer and Stefan Weiner. It was edited by Ellen Orvisilli, is our senior producer.
Our technical director is Jared Floyd. Our fact checker is Erica Anderson.
Michael Garoflo is our executive producer and Jasmine Morris is our story consultant.
To see what music we use in the episode go to storycore.org where you can also check out
original artwork by Lynn Lucia.
For The Storycore Podcast, I'm Camille Gashani. Catch you next week.
Support for this podcast comes from the Corporation for Public Broadcasting,
a private corporation funded by the American people.
I'm Rachel Martin. After hosting Morning Edition for Years,
I know that the news can wear you down. So we made a new podcast called Wild Card,
where a special deck of cards and a whole bunch of fascinating guests help us sort out what makes life meaningful.
It's part game show, part existential deep dive, and it is seriously fun. Join me on Wild Card,
wherever you get your podcasts, only from NPR. David Lynch's films explored dark themes.
But in a rare interview on Wild Card this week, he says he's remarkably content,
and you can be too. We're supposed to be like little dogs, we're going to tail this wagging and
being happy, little smiles on our face all day long. This is the way it's supposed to be.
I'm Rachel Martin. Join us on NPR's Wild Card podcast, the game where cards control the conversation.
On the Ted Radio Hour, linguist Ann Kersan says she gets a lot of complaints about people using
the pronoun they to refer to one person. I sometimes get into arguments with people where they will say to me,
but it can't be singular and I will say, but it is. The history behind words causing a lot of debate.
That's on the Ted Radio Hour from NPR.
