Health

Not Fade Away – Gig-Ed Expert – Medium

by Rebecca Alexander

She is beautiful, intelligent, young and active. She is also gradually losing her visual and auditory connections to the world. What must this be like? Rebecca Alexander tells her story in Not Fade Away, an inspirational walk through her challenging days, months and years of diminishing sight and hearing.

Her childhood and adolescence, while not exactly typical, will still ring familiar to many. There is her parent’s divorce, her inability to perform as well as her twin brother, and other details of petty blunders common to teens. But the stage is set differently for Ms. Alexander. The leitmotif of Usher Syndrome Type III, rare and without a cure, is like an intensity filter on the whole scene.

My heart went out to her most when she finally internalized the truth of her diagnosis, which wasn’t until she was at University of Michigan as an undergraduate student. She knew but she did not really know. So many can connect to this slow-awakening to a very difficult truth, which, when acknowledged and accepted, does not feel gradual at all. It falls upon one like a thunderclap in that one moment of crystalline understanding. When you finally know. She impressed me throughout this book but so, so much in this section.

I love her mantra: Breath in peace, breath out fear. I have used it every day since I read the words in her book, and I’ve shared it with my own four kids.

This book is not just about Rebecca; it is also about the many lives which crossed hers and the ways that people have helped and cared along the way. It makes the reader feel hopeful for humanity.

Rebecca became a woman of depth, character and destiny because she had to silence the sound of her own ego in order to solve the practical problems of her rare genetic disorder. She has done some hard, hard work to defeat her own weaknesses and these weaknesses are not her loss of sight and hearing. She has to daily struggle against her own nature in order to maximize her effectiveness in life and her sense of agency. These things are the qualities which enable and ennoble her and others like her — people who have some glacier-like difference (disability) which cannot be minimized, erased or ignored.

You will fall in love with her page by page, as you witness her battle against frailty. She wins. She totally wins.


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