Spent: A Memoir

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Would I be able to support myself?

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In light of this, the smart thing to do, I concluded, was to make the most of my vision, while I had it. My aunt threw herself into fundraising efforts. My grandmother prayed. And my father, a doctor, hit his medical books in an attempt to understand my disease and possible treatments.

I kept myself at a safe distance from all these coping strategies, having found a very effective one myself, which was Cross That Bridge When I Come To It. I used my remaining vision to do the things I loved—reading, acting in plays, traveling.

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A Son's Memoir

Later, that involved taking in the sight of the man I loved and would marry, and soaking in every detail of the three children whom I treasure more than anything. It was vision well spent. My field of vision shrank; I developed color blindness, lost depth perception; I developed cataracts. I was declared legally blind and registered with the New York State Commission for the Blind, which provided me with services like cane training and adaptive technology instruction.

I was, very belatedly, building an effective coping strategy, but I was still missing something critical, and that was emotional support. Finally, I summoned the courage to attend a local meeting of my Foundation Fighting Blindness networking group.

Memoir of time spent with Grandma reveals old truths, young wisdom - The Globe and Mail

At first, I was terrified; there were blind people there, fully blind folks, with canes and guide dogs. But then they started talking about the challenges they faced, their fears and hopes, and it sounded so familiar. The urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, age-related macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases.


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