Not Fade Away: A Memoir of Senses Lost and Found by Rebecca Alexander, Sascha Alper

groups rallied together. My father, a corporate lawyer at a big firm at the time, took on the case, pro bono, and, leading a team of lawyers, got a stay of execution granted, ultimately going all the way to the Supreme Court to have it upheld. When his law firm had a conflict of interest with the case, he chose to leave it and pursue justice.
    I wanted to be like my father and to reach out to help others. When I was fifteen, in the early nineties, after being extraordinarily moved by a young HIV-positive man named Scott Fried who came to speak at my synagogue, I began volunteering for Project Open Hand, a nonprofit organization delivering meals to people living with HIV/AIDS throughout the Bay Area. I wantedto know that I was making a real, tangible difference in people’s lives, and I learned at an early age that knowing that I was helping someone else gave me great pleasure and a sense of purpose. I don’t know whether or not my disabilities contributed to that feeling, whether I knew on some level that I was going to be someone who would need help more and more as my life went on, but it was something that was really important to me.
    When I first started delivering meals, I didn’t know what to expect. Perhaps that I would go in, chat, help in any way I could. Most people I delivered to, though, would talk to me through the door and ask me to leave the food on their doorstep, or they would open the door just wide enough so they could take the food we delivered to them. They generally didn’t show their faces or want to be seen. It was in the early nineties, and there was still a terrible stigma around the disease, even in the Bay Area, and many of them may have been too sick to want anyone inside. It broke my heart to think of them alone with their pain and illness, feeling shut out from the rest of the world.
    When I was seventeen, my father nominated me to run with the Olympic torch as a “community hero,” and he submitted an application through
Sports Illustrated
to the Olympic committee about my work with Project Open Hand and my disabilities. I had no idea, and when they called I thought it was a prank. At first I was embarrassed. I wanted to be known as someone who helped others, but I didn’t want to be known as someone who did this “even though she was disabled.” I got over it quickly though, because how often do you get to run with the Olympic torch? There was a story about it in our local paper, and I ran holding the torch for almost a mile (it’s heavier than it looks), my escort runner beside me, a motorcade behind me, crowds of friends and strangers lining the route and cheering me on.

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    T here were things that I could do like any other normal teenager, that I didn’t have to feel insecure or different about, and my absolute favorite was driving. When I was sixteen my sight was good enough to take the driving test, and my ophthalmologist assured me that it was all right for now, as long as I didn’t drive at night.
    I have always loved driving, and I was always excellent at it, as I still tell everyone who will listen, repeatedly. Though it’s been years since I’ve been behind the wheel, I want them to know. Because of all the things I’ve lost, it was, in many ways, the hardest. As a teenager, there was nothing I was more excited about than getting my license, the ultimate ticket to independence. My dad was with me the morning I went to the DMV to take my test (which I passed with flying colors), then I dropped him off at the BART station and drove to school for the very first time by myself. I promised him that I wouldn’t turn the radio on, and I was true to my word, completely focused and hyperaware of everything around me, so thrilled to finally be the one behind the wheel.
    Sometimes I’d take the long route home from school to pass by as many after-school hangouts as I could, so that kids who knew me would see me driving. At school, I’d walk onto campus in the mornings, trying