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.

July 15, 2014
One woman's story of gradually losing her sight and hearing.From the age of 12, Alexander knew her life was going to change. Born with two recessive genes that cause type-III Usher syndrome, the author was told she would experience the gradual loss of her hearing and sight until she would be completely blind and deaf. With honesty and compassion, she details the slow, steady progression of her disease even as she tried to hide her disabilities from her friends, boyfriends and co-workers. Realizing that her world was narrowing, Alexander excelled in school, played soccer and delivered meals to HIV/AIDs patients. However, she continued to deny she had any physical ailments. Then, just after high school graduation, calamity struck. Drunk and nearly blind in the dark, Alexander stumbled off her balcony, landing 27 feet below on a stone patio; she broke every limb in her body except her right foot and leg. Multiple surgeries and months of physical therapy forced Alexander to make conscious decisions about her future. After attending the University of Michigan, she moved to New York City and attended Columbia, double majoring in social work and public health. She became a spin instructor, fell in and out of love, and continued to assess the pros and cons of her disabilities. She could shut out the never-ending sounds of the city by removing her hearing aids, but then she could no longer hear a person whisper in her ear. She couldn't really see the stars, but she loved the feel of a person signing into her hands in the dark. As she steadily accepted her fate, Alexander emphasized the importance of embracing the here and now, of being present and grateful for the gift of life, in whatever shape it might take.An honest and eloquent look at life from someone who has lost two of her senses.

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