by Dan Spoone
There is a very large range of people living with vision loss. Personally, I feel like my life has spanned the entire spectrum. I have retinitis pigmentosa (RP), which is a degenerative retinal disease. It travels through vision loss at different rates for each individual. My grandparents took me to a retinal specialist at the age of 6, and his diagnosis began my journey. My parents knew that I needed glasses, but this diagnosis threw them for a loop.
My father shared with me just a few years ago about learning of my diagnosis. It was very hard to find much information on RP in the early 1960s, but he found an article in our family encyclopedia. For those of you who are under the age of 40, encyclopedias were where you looked up information before Google and the Internet. The article said RP was a degenerative retinal eye condition that could lead to blindness by your early 50s. My dad reasoned that this was almost 50 years away and that’s a really long time. Unfortunately, the encyclopedia did not properly explain that the journey to blindness would travel down the path of increasing vision loss along the way.
So, low vision has meant different things to me along my vision journey. In kindergarten and first grade, before the days of Individualized Education Plans (IEPs), it meant my mother meeting with my teachers the first day of school to explain that I needed to sit on the front row and might need some extra help with subjects like reading, writing and art. In those early days, this always made me feel embarrassed. Now, I realize what a huge advocate my mother was to fight for educational rights for her son.
The hitter was in the batter’s box at my first Little League game in the fourth grade and I was playing left field. The batter hit a soaring fly ball into the clouds. I looked up into the sky and all I saw was bright blue light. The ball hit the ground several feet away from me and I never saw it. This was my first memory of vision loss permanently changing my life. My vision had progressed to the point where I could no longer see a baseball in the sky. This meant no more baseball, no more Little League and the first time I remember my low vision keeping me from doing something I really wanted to do. This is the challenge with low vision and a degenerative eye disease. It requires continuous adjustment, while still trying to hold on to the strong desire to be “normal.” Looking back on my childhood, I wish someone would have let me in on the little secret that no one is “normal.” We all want to fit in with our peers, our families, our classmates, our community.
The key to surviving my middle school and high school years was a great group of friends. Dan and Tom Weidl, Calvin and Gerry Ray Lingelbach and Barney Balderossi (Bubbles) and Lou Nostro (Brains) were my lifeline to freedom and social independence. We did everything together. We played basketball with a red, white and blue ball, so I could see it. We played poker with jumbo cards. We took road trips to the beach, ate lunch together in the school cafeteria and they never gave me a break for being visually impaired.
In fact, they loved to give me the business. Our first out of town road trip was to Atlanta to see the Braves. We borrowed Mr. Lingelbach’s red Pontiac Bonneville and we all piled in for the 500-mile journey to Atlanta. We drove all night, so we would only have to pay for one night at the hotel. We stopped in Lake City at McDonald’s and I was the last one headed back to the car. Of course, when I got back to the car, all the doors were locked. So, I’m getting more and more upset. “OK, the joke’s up, let me back in the car,” I shout, as I’m banging on the windows and doors. “Come on, let me in.” Finally, I hear laughter from three parking spots away. “Spoone, we are over here.” It was a different red car. What made it so much worse was the fact that there was a family of four in the car and they were quite alarmed. “Thanks, you jerks,” I said. “Why didn’t you tell me I was at the wrong car?” “Sorry, we were laughing too hard,” they howled.
The low vision journey continued throughout the stepping stones of my life. I received a “B” in driver’s ed, but never got a driver’s license. I became a client of the Florida Division of Blind Services (DBS) and they supplied a reader in college. I worked as a character at Disney World and needed special defogger on my prescription sunglasses to see the guests. I walked off four-foot walls, fell down stairs, and fell into fountains. Finally, I bought my first white cane. Of course, at first, it was strictly an identification cane. There was no orientation and mobility training. I moved from a handheld magnifier to 4X magnifying glasses, then to an electronic magnifier and 10X magnifying glasses. First, I wanted large print, then larger print, then smaller print because I was using my CCTV. I always preferred white letters on a black background. My favorite times of the day were dusk and dawn. Bright light really blinded me and at one time I carried three pairs of sunglasses for different intensities of light. Next came the puffy dots on my appliances, the large print checks, the talking watches from Radio Shack and the micro-cassette recorder. Right, it’s a lifetime journey.
Dating was another challenge. How much did you share about your vision and when? I remember one time after a first date. I bought a new shirt to make a good impression. She leaned over for what I hoped was a good-night kiss. Instead, she reached out to my chest and pulled off a size sticker from my shirt. She placed the sticker in my hand and said, “good night.” There was no second date.
On the other hand, the experience of attending my first FCB convention with others with low vision was liberating. Both men and women were accepting of your vision loss. It was a comfortable environment where you could share stories and not feel you needed to explain your eye condition. This initial experience led to other events, where I met my wife, Leslie. Our first ACB convention was in Orlando in 1998. We attended social mixers with CCLVI and RSVA. Everyone was laughing, joking and having a great time.
My low vision journey has come to an end. My RP has progressed to the point of barely light perception. My friends within ACB have helped me through this journey. The transition to total blindness was interesting. I have fewer accidents. You can’t trust that low vision for mobility. I do miss the Christmas lights in December and the orientation that comes from the outline of buildings and landscapes. I miss seeing Leslie’s face in the elevator light at Sam’s Town Casino in Las Vegas — the best contrast on the planet.
However, we consider this the best time in our lives. We are comfortable with who we are. This is the best time in the history of the world to be blind. Accessible technology has exploded. We use JAWS to navigate our computers. The iPhone with VoiceOver built into the iOS platform. We have smart TVs with voice-activated remote controls and smart appliances. Uber and Lyft provide better access to transportation, and our Victor Reader Stream allows for easy access to BARD books and the latest podcasts. ACB has played a significant role in these advancements with our advocacy work with these business partners.
It is truly a wonderful life. We are active members of our community. We go for walks, enjoy our time vacationing in Key West, and the tremendous purpose of service that ACB brings our lives each day. You know, Dad, the encyclopedia was right. Fifty years later I did lose all my sight, but my low-vision journey was worth the trip. As we used to say at Disney, it has been a magic ticket ride.