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He’s 27 and ‘grateful to be going blind’ | We The People

“I have a sense of gratitude for everything I get to do because I just don’t know when I’ll be able to do it again," said Joe Rinaldi.

Joe Rinaldi, 27, is on a mission to share what he's learned about positivity and gratitude through progressively losing his sight.
Joe Rinaldi, 27, is on a mission to share what he's learned about positivity and gratitude through progressively losing his sight.Read moreMONICA HERNDON / Staff Photographer

Meet Joe Rinaldi, who recently left his career as a physical therapy doctor to spread what he’s learned about positivity and gratitude through progressively losing his eyesight.

• On meeting his wife: “We were in the same lab group dissecting a cadaver. We got to know each other over a dead body.”

• The mind’s eye: “I feel like what I’ve lost in sight I’ve gained in vision. To me sight is what we see with our eyes open, but vision is what we see when we close our eyes. It’s is the power of perspective and imagination and hope.”

Joe Rinaldi was 10 the first time he realized he’d lost all vision in his right eye.

His parents took him to three specialists that day before he was diagnosed with Best Disease, an inherited form of juvenile onset macular dystrophy that causes loss of central eyesight.

While there’s no cure for Best Disease, doctors were able to cauterize a blood vessel leaking behind Rinaldi’s retina. It restored much of his vision but he was told to stay away from light for a few days.

Doctors also told Rinaldi that with each “episode” of Best Disease (and each corresponding procedure to treat the side effects), he’d permanently lose more of his eyesight.

“The doctors told us it’s extremely rare and they’re still learning about it but what I could expect is a sporadic journey where I would lose more of my sight, and then it would be stable. Then I would lose more of my sight,” said Rinaldi, 27, of East Falls. “The worst-case scenario would be that I could become legally blind.”

For the first few days, Rinaldi sat in his family’s basement in Westfield, N.J., protecting his eyes from the light and trying to cope with the news.

“I had a lot of time to be scared about what the future holds,” he said.

And for 13 years he was scared. And confused. And angry at the awful disease with the oxymoronic name that could cause him to lose his sight at any time, and might one day take it permanently.

“Every day was a ‘Why me?’ moment,” he said. “I was angry at life for taking away my sight.”

While Best Disease affects both of Rinaldi’s eyes, his right is far more impacted than his left. With both eyes open, he said his brain can “piece together a pretty competent picture of what’s in front of me,” but since his central vision is affected, he sees mainly through his peripheral field.

“Even looking at stars, for example, I can’t see the stars I’m looking directly at,” he said. “If I want to see a star in my peripheral vision, I’ll go to look at it and it disappears.”

Rinaldi views his life in two parts now: when he saw Best Disease as a curse, from the ages of 10 to 23, and from 23 on, when he learned to see it as a blessing.

“I’m grateful to be going blind,” he said. “As I was physically able to see less, I was able to see more of all that comes with the struggles around me and every reason to be grateful for every single day.”

So what changed?

His perspective (And spoiler: a special woman who strengthened his faith in God had a little something to do with it, too).

“That question of ‘Why me?’ changed to ‘Why not me?’” Rinaldi said. “I felt I had the biggest struggle I could imagine, but now I know better. We all go through hard things — we can’t control that — but we can control how we respond.”

In school, though Rinaldi had to study longer and harder than most of his peers, he excelled at academics and received his bachelor’s degree in exercise science and kinesiology from Rutgers University’s New Brunswick campus.

Rinaldi was preparing to enter the Doctor of Physical Therapy program at Drexel University in 2016, when his Best Disease flared up during a family trip to Aruba.

“I sat in a dark hotel room and cried and felt sorry for myself and worried what the future would bring,” he said. “I didn’t know if I’d be able to go to school.”

He thought about withdrawing from Drexel, but his parents encouraged him to stop thinking “What if?” as in “What if I go blind?” and start thinking “Even if,” as in “Even if it happens, I’ll figure it out then.”

In his first year, Rinaldi met a woman named Michaela Horst in his lab group. When he finally asked her out and she beat him at mini golf, he knew he wanted to get to know her more.

“As I spent more time with her, I stopped thinking about how bad I was feeling. I began to realize that life was so much bigger than me,” he said. “And she invited me to church with her, which was something I had fallen away from in that darker season of my life.”

Rinaldi went because he liked Michaela, but realized later “that the whole time God had been guiding me back to him and the bonus was her.”

“It wasn’t until I met Michaela and my faith was strengthened that I was able to look back and realize all the struggle and adversity was leading me up to this point,” he said.

Rinaldi proposed after they graduated in 2019 and the couple was married last year, in a small ceremony behind their church in Roxborough. She took a job at Thomas Jefferson University Hospital and for two-and-a-half years, Rinaldi worked as a physical therapy doctor at an outpatient clinic in Mount Airy.

But still, he felt something was missing.

“And that was making the unique impact I was called to make,” he said.

This year Rinaldi left his career to pursue writing (he’s kept a blog since 2017); inspirational speaking (mainly to school students); and coaching (fitness, mind-set, and business). He’s also started a company called Project Endure, which challenges people to do hard things on purpose, like taking daily cold showers (something he’s done for five years) or meditating each day.

“I need to share a message of positivity, strength, and hope for that person who is going through something hard but you may not be able to see it on the outside,” he said. “It’s a hard message to show somebody that they do have things to be grateful for when they’re dealing with a diagnosis or the loss of a loved one, but perspective is the whole reason I’m able to have gratitude.”

This Thanksgiving, Rinaldi is grateful for every moment.

“The uncertainty of not knowing what tomorrow brings is definitely scary. Every time I read a book or look at my wife, I know it could be the last time I do those things,” he said. “I have a sense of gratitude for everything I get to do because I just don’t know when I’ll be able to do it again.”

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