Jon’s Story

Jon has Retinitis Pigmentosa. He says, “I’ve experienced night blindness my entire life. When I was a kid, I thought that was normal. It wasn’t until years later when I realized other people could see in the dark and that I couldn’t.”

One day, during a run-of-the-mill screening with an optometrist, a retinal scan revealed that Jon had Retinitis Pigmentosa. Like many eye diseases, he wasn’t experiencing symptoms at the time besides night blindness. And then, his peripheral vision gradually shrunk, and life became a little more difficult every year. Finally, he decided he had to do something about it.

Jon reached out to the organization Prevent Blindness, and they introduced him to the Eye2Eye program at Rutgers University. He found an ophthalmologist, and from there, he had a visual field test, retinal scans, and a genetic test. Jon received an official diagnosis of Retinitis Pigmentosa, and a plan of action was developed. As it stands now, he has less than ten degrees of central vision remaining. He is considered legally blind by the New York State Commissioner for the Blind.

Connecting with Lighthouse Guild
The New York State Commission for the Blind connected Jon with Lighthouse Guild, and that’s when the ball really started rolling. They helped coordinate the programs and services that he had been receiving at Lighthouse Guild. Jon says, “My coordinator put me in touch with Outreach and Referral Coordinator Lisa Miller at Lighthouse Guild, and Lisa arranged for me to take keyboard training.”

Rehabilitation Teacher Dennis Farro provided Jon with keyboard training. He says, “[It] was actually pretty fun. It’s kind of like playing a video game.”

Following the keyboard training, Jon began to receive Orientation & Mobility (O&M) training. “It’s been a very educational experience,” he shares. “My orientation & mobility instructor, Diane Formoso, is amazing.” Jon feels all the training has been invaluable. He had been using a cane for about nine months but found out there was a correct way to use it. He says Diane has been great in teaching him the tricks and techniques that he never knew about, like ensuring that you’re swinging the cane the right way, changing the tip on the end of the cane, and navigating the subway stairs.

Jon says, “What I’ve gained from working with the Lighthouse Guild has been fantastic. Honestly, it’s been a lifesaver for me. I’m still able to maintain my independence, I can still go to work, and I can still walk my daughter to school every morning. The work I’ve been able to do at Lighthouse Guild has been immeasurable in maintaining that independence.”

Jon says he is lucky because he lives in the country’s most user-friendly city for someone experiencing visual impairment. The subway system is a godsend because he can’t drive anymore. He feels his days are the same as they were before his diagnosis. Nothing has changed except that he uses a white cane. He shares, “And now that I’ve been taught how to use it correctly, my lifestyle and day-to-day haven’t changed at all.”

Jon reflects that he was at a standstill when his vision loss started happening. He says, “When this kind of thing happens to you, the first reaction is denial. So, I spent the first couple of years pretending I could see when I couldn’t.” This caused more problems for Jon, and his life became just one hurdle of embarrassing episode after another. He finally got over that hump, which was hard. Still, it only happened once he started to experience diminished returns from pretending that he could see.

“Things got so bad,” Jon said. “It finally occurred to me that if I just accepted it, and if I took the proper steps to take care of this problem, it would over-shoot whatever minuscule gains I was getting by pretending that I could see.” Once he accepted the situation and started taking proactive steps to take care of himself, whether buying that first cane, speaking with a counselor, receiving keyboard training and Orientation & Mobility training, every step he took improved his life incrementally.

Writing a Novel While Experiencing Vision Loss
Jon is a magazine editor and has been teaching fiction writing for more than ten years. He’s also an author — publishing short stories for about twelve years and recently a novel entitled The Appetite Factory. He started writing the book a number of years ago, incidentally, around the time that he was diagnosed with Retinitis Pigmentosa.

The novel is about a man who works in crisis management. He helps take care of people’s secrets, the business leaders, and celebrities who find themselves besmeared by reputational scandal. But the man is experiencing a crisis of his own. He has a deep, dark secret, which he’s been hiding his entire life, and then someone discovers his secret and threatens to blackmail him.

Jon shares, “What I didn’t realize at the time that I was writing the book is that there are very distinct parallels between what the character was experiencing and what I was experiencing. I didn’t want anyone to know that I was going blind. I even managed to sell the book and get it published. My publisher had absolutely no idea they were publishing a book by a blind guy, which looking back, was a terrible decision, but that was just my way of handling it at the time. As silly as it sounds, I think that’s a completely reasonable response to be embarrassed about having a disability.”

Advice for Others Experiencing Vision Loss
Jon says, “For someone experiencing eyesight loss, I understand that it can be embarrassing, but taking care of the problem is paramount. You really have two choices: You can either put your head in the sand and watch your life get progressively worse, or you can take positive steps to improve things. Some of us take that step sooner than others, but the dividends begin paying out quickly once you do.”

He continues, “Lighthouse Guild is an incredible resource for anybody who has vision loss, low vision, or blindness. I consider myself incredibly lucky to live in a city where I can access a resource like this. I’m incredibly grateful that I’ve been able to work with Lighthouse Guild, and I can’t wait to continue my journey with them going forward.”

What’s Next?
Because of his work, Jon is writing all the time, and the writing is more challenging now, but he’s found ways of working for the time being. Jon says, “My next big step, and hopefully, that will be soon, is to begin adaptive technology training. That’s something I’m really looking forward to.”

Jon’s book, The Appetite Factory, is available on Amazon.