Joe Rinaldi was diagnosed as a child with the best disease. Today he is “grateful that he went blind”
Meet Joe Rinaldi, who recently quit his career as a physiotherapy doctor to share what he learned about positivity and gratitude with gradually losing sight.
• By meeting his wife: “We were in the same lab group dissecting a corpse. We got to know each other about a dead body.
• The eye of the mind: “I have the impression that what I lost sight of, I gained in vision. For me, sight is what we see with our eyes open, but vision is what we see when we close our eyes. It is the power of perspective, imagination and hope.
Joe Rinaldi was 10 when he first realized he had lost all vision in his right eye.
His parents took him to three specialists that day before he was diagnosed with Better disease, an inherited form of juvenile macular dystrophy that causes central vision loss.
While there is no cure for the best disease, doctors were able to cauterize a leaking blood vessel behind Rinaldi’s retina. This restored much of his vision, but was told to stay out of the light for a few days.
Doctors also told Rinaldi that with each “episode” of Best Disease (and each corresponding procedure to treat side effects), he would permanently lose more of his sight.
“Doctors told us it was extremely rare and they were still learning, but what I could expect was a sporadic trip where I would lose my sight more and then it would be stable. Then I would lose my eyesight more, ”said Rinaldi, 27, of East Falls. “The worst-case scenario would be for me to become legally blind. “
For the first few days, Rinaldi sat in his family’s basement in Westfield, NJ, shielding his eyes from the light and trying to deal with the news.
“I’ve had a lot of time to be afraid of what the future holds for me,” he said.
And for 13 years he was afraid. And confused. And angry at the terrible disease with the oxymoronic name that could cause him to lose his sight at any time, and could one day take it for good.
“Every day was a ‘Why me?’ moment, “he said.” I was mad at life for taking my sight out. “
While Best Disease affects both Rinaldi’s eyes, his right is affected much more than his left. With both eyes open, he said his brain could “piece together a fairly competent image of what’s in front of me,” but because his central vision is affected, he sees mainly through his peripheral field.
“Even looking at the stars, for example, I cannot see the stars that I am looking directly at,” he said. “If I want to see a star in my peripheral vision, I will look at it and it will disappear.”
Rinaldi now sees his life in two parts: when he saw the best disease as a curse, aged 10 to 23, and from 23, when he learned to see it as a blessing.
“I am grateful that I went 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 all the reasons to be grateful for each day.”
So what has changed?
His point of view (and spoiler: A special woman who strengthened her faith in God also has a little something to do with it).
“This question of ‘Why me?’ changed to “Why not me? “,” Said Rinaldi. “I felt I was having the biggest fight I could imagine, but now I know better. We all go through difficult things that we can’t control, but we can control how we react. “
In school, although Rinaldi had to study longer and harder than most of his peers, he excelled in his studies and earned his bachelor’s degree in exercise science and kinesiology from the New Brunswick campus of the ‘Rutgers University.
Rinaldi was preparing to enter the Doctoral Program in Physiotherapy at Drexel University in 2016, when his best illness broke out during a family trip to Aruba.
“I sat in a dark hotel room and cried and felt sorry for myself and worried about what the future would bring me,” he said. “I didn’t know if I could 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 this happens, then I’ll find out”.
During her freshman year, Rinaldi met a woman named Michaela Horst in her lab group. When he finally invited 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 felt. I started to realize that life was so much bigger than me, ”he said. “And she invited me to church with her, which I had walked away from during that darkest season of my life.”
Rinaldi went there because he loved Michaela, but later realized “that all the time God had guided me to him and the bonus was her”.
“It wasn’t until I met Michaela and my faith grew stronger that I was able to look back and realize that all the struggle and adversity had brought me to this point,” said he declared.
Rinaldi proposed after graduating in 2019 and the couple got married last year, in a small ceremony behind their church in Roxborough. She worked at Thomas Jefferson University Hospital and for two and a half years Rinaldi worked as a physiotherapy physician in an outpatient clinic in Mount Airy.
But despite everything, he felt that something was missing.
“And it had the unique impact that I was called to make,” he said.
This year, Rinaldi left his career to devote himself to writing (he kept a blog since 2017); inspirational speech (mainly to school children); and framing (physical condition, state of mind and business). He also started a business called Lasting the project, who challenges people to do difficult things on purpose, like taking cold showers every day (which he has been doing for the past five years) or meditating every day.
“I need to share a message of positivity, strength and hope for this person who is going through something difficult but that you may not be able to see from the outside,” he said. “It’s a tough message to show someone they have things to be thankful for when facing a diagnosis or the loss of a loved one, but perspective is the only reason for which I can be grateful. “
This Thanksgiving, Rinaldi is grateful for every moment.
“The uncertainty of not knowing what tomorrow brings is truly frightening. Every time I read a book or look at my wife I know it might be the last time I do these things, ”he said. “I have a feeling of gratitude for all I can do because I just don’t know when I can do it again.”
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