Imagine being told as a teenager that, due to a rare genetic disorder, you will lose your vision and the ability to hear by the time you are 30. Rebecca Alexander details this exact scenario in her memoir Not Fade Away: A Memoir of Senses Lost and Found. Alexander’s reaction to this devastating diagnosis of Usher Syndrome Type III was to spring into action, seeking multiple avenues of empowerment. She made the decision to pursue social work in graduate school so that she could help others, and she trained for an HIV/AIDS bicycle ride, became a spin instructor, and engaged in other extreme, high-endurance sports. In her pursuit of personal perfection to thwart concerns about becoming dependent on people, she also developed an eating disorder.
Now, at 35, with only a fraction of her former ability to see and with significantly deteriorated hearing, Alexander is a psychotherapist with two master’s degrees from Columbia University. Not Fade Away tells her extraordinary story, at times harrowing, but often funny and exceptionally inspiring. Alexander meditates on what she has lost—from the sound of a whisper to seeing a sky full of stars—and what she gained in return—an exquisite sense of intimacy with those she is closest to, a profound gratitude for everything she still has, and a joy in simple pleasures that most of us forget to notice.