IN CELEBRATION OF MY BIRTHDAY
‘The Foundation Fighting Blindness is a nonprofit organization that funds research for discovering treatments for inherited retinal diseases, like the retinitis pigmentosa that my husband, Dave lived with. Darkened of sight but not vision. Our future descendants are at risk for having this disease passed down to them. A legacy donation brings Dave’s dream closer to the edge of a cure. The light of the world is ever arriving.
For 21-years, I have made annual donations to the FFB, funding groundbreaking research in their mission to slow and eventually stop the progression of vision loss, develop state-of-the-art technology to improve mobility and independance, and provide resources for individuals and families.
October is also my birthday month, and I’m asking you to join me in this month’s campaign by making a donation to the Foundation Fighting Blindness.
Through the month of October, the FFB is running a campaign for those affected by retinal diseases to share their journey with vision loss through story. Blindness is not a complete blackout for everyone; it’s a spectrum.
So, I am sharing pieces of Dave’s story on his behalf, through reportage and excerpts from letters he wrote to me when he was in his twenties.
In 1972, David’s mother noticed he couldn’t see her in an airport terminal. She’d felt that it didn’t warrant significant attention at the time. He was 11-years-old. Two-years later, when David was 13, his brother noticed that he was having trouble seeing in the dark. “If we were outside in dusk and I threw David a ball, he’d miss it! I noticed he’d walk into things, even in daylight. I didn’t think much of it, so I didn’t tell mom and dad right away.” Then a neighbor noticed. She said to Stan and Hiro, “something is wrong with David’s eyes”, advising them to take him to a doctor.
“So I took him to my eye doctor, said Hiro (Mitzi), and he said, if you want a second opinion, go to Montefiore Hospital in New York City. After evaluating him, they referred us to the Massachusetts Eye and Ear Infirmary in Boston, Massachusettes. That was it. David was diagnosed with Retinitis Pigmentosa (RP), recessive form.”
It was at this time that Dave was classified as legally blind, with less than 20% peripheral vision, aka tunnel vision, and night blindness.” Retinitis Pigmentosa is a progressive disease in which blood flow is restricted to the retina, and rods and cones disintegrate, resulting in night blindness and progressive loss of peripheral vision. He was given a projection for complete blindness by 40-years-of-age. There were no treatments or corrective lenses available to help him, only palliative devices, such as a white cane, a tape recorder, a therapist and a recommendation by the New York State Commission for the Blind and Visually Handicapped to learn Braille. “Things began to make more sense, says Hiro. He had been bumping into things that were not too high, he just hadn’t seen it. We just thought he was clumsy.”
“I have had quite a problem with transportation. In high school, I was hurt a couple times by girls who broke up with me shortly after they found out I couldn’t drive (legally). So for the longest time I didn’t care, I’d have occasional, meaningless encounters and be satisfied. That was all I needed, all I wanted. Life keeps changing. Now I do want a little more.”
“I’m listening to a rather rare tune by Triumph off the first album called “Blinding Light Show/Moonchild”. It’s kind of two songs they combined. It’s real sweet yet powerful, something you should get your ears on if you can. “A naked heart is quickly torn apart and the burning grows… and the blind shall lead the sighted as we lose the candle glow…and no one knows tomorrow in the blinding light show…”.
From childhood opthalmologist, October, 2001
“I was always struck by David’s optimism in the face of his retinitis pigmentosa. Every time that I examined him, I left the room feeling that his illness bothered me and, of course, his parents, more than it worried him. I will never know whether deep inside, he considered his visual problems merely an unfortunate inconvenience, but nevertheless, his interactions with others was reflective of his ability to put aside this major adversity and move on with his life. This was an effort that not many people can achieve. It was always uplifting to speak with Stan and Mitzi about David’s continuing accomplishments – his education, his growing consulting business, his love of the outdoors and most importantly, his marriage, his own home and his growing family. Although the shock of his death is overpowering, I know that his good deeds and our fine memories shall always be there.”