Not Fade Away

August 4, 2014
In her profoundly inspiring account of life with a disease that is steadily stealing her vision and hearing and has been since childhood, Alexander offers an optimist’s take on how to live with meaning and not succumb to pity or fear. It isn’t until Alexander, a soccer-loving girl who likes to run around with her brothers, reaches adolescence that her family discovers an explanation for her falls and lack of balance: an inherited rare genetic mutation called Usher syndrome type III. Her version of events, which is less severe, makes her feel “comparatively lucky... and grateful” because she was able to enjoy years of blissful normalcy and her eyes and ears had the chance to take in countless memories absent later worries and heartbreak. During the summer after high school, she has a catastrophic accident after falling out a window, breaking or fracturing nearly every bone save for her right leg and foot. Having to delay college while recovering, she learns lasting lessons about how much pain she can endure, the lack of control on which she can’t waste time dwelling, and the appreciation of her body as something to cherish. Relocating to New York, she becomes an advocate for herself and others with disabilities, earning a double master’s degree to work as a psychotherapist. Her ability to find so much to be grateful for after being dealt such an unfair hand challenges those of us with far fewer hardships to treat each day as a gift.