Whenever I am with a group of people with hearing loss, as I was last week at the annual convention of the Hearing Loss Association of America, I am impressed by the hurdles so many have overcome. Sudden or severe hearing loss is an ever-present challenge all on its own. So many at Convention, however, also have complicating factors: vision loss or blindness, tinnitus, vertigo or dizziness. Many have hearing dogs to assist them, some use motorized wheelchairs. All of them, if they have made it to Convention, also have strength and resilience. They wouldn’t be there unless they did. Many also have another crucial asset: a sense of humor.
This year’s keynote speaker was Rebecca Alexander, author of “Not Fade Away: A Memoir of Senses Lost and Found.” She has Usher Syndrome Type 3, which results in blindness and deafness. I first came upon Rebecca when I reviewed her book in the New York Times in February 2014. She is an inspiring speaker (with a sense of humor) and if you have a chance to hear her speak, don’t miss it. In the meantime, read her book. And soon you’ll be able to see the movie, starring Emily Blunt. Here’s a link to her website.
Rebecca began to lose her vision at age 12. By the time she was 19, her deafness had been diagnosed. Her trials seem, in retrospect, Biblical. She developed a severe eating disorder. Her twin brother, Daniel, was diagnosed with bipolar disorder that was resistant to treatment. Her boyfriend got cancer. She had tinnitus, with auditory hallucinations: a woman screaming at night, a jackhammer.
In spite of all this — or maybe because of it — she was driven to succeed. As a teenager at summer camp, she set off at 3 a.m. for a five-mile swim across a lake. In her early 20s, (by then well into deafness and blindness) she trained for a weeklong AIDS-benefit bike ride from San Francisco to Los Angeles. She ran extreme-athlete events and taught spin classes. She swam from Alcatraz to shore. She climbed Mt. Kilimanjaro with her sister. She climbed the treacherous Inca Trail at Machu Picchu: “My lack of peripheral vision made it easy to block out the deadly fall that you could take on either side,” she dryly comments in the book.
She pushed herself professionally as well. She has a double M.A. from Columbia in psychology and public health and has a successful private psychotherapy practice. As one friend wrote in an interview about Rebecca, “I think she keeps going 100 miles an hour to not have to process it all.”
Maybe, but as Rebecca wrote in her memoir: “If there’s one thing you absolutely need with a disability like mine, it’s resilience. I’m not talking about strong will and zest for life, either — but pure physical resilience. When you are going blind and deaf you are basically an accident waiting to happen.”
And happen they did. Just before she left for college, she fell out of her second-story bedroom window, mistaking it in the dark — and a drunken stupor — for the door to the bathroom. She broke virtually every bone in her body in the 27-foot fall onto a flagstone terrace, except for her neck and her head. The accident — and her recovery, which left her with a limp — taught her “something integral to who I am today,” she writes, “the perseverance I would need every day of my life.”
Today she has some vision and can focus on a speaker well enough to read lips. She has two cochlear implants and hears well with them. The Rebecca of the 2014 book was an astonishing person, but I worried that it all might come crashing down on her. Seeing her strong and beautiful and telling her story at Convention was clear evidence that she has overcome adversity that most of us can barely imagine. But her audience too was made up of people who have overcome adversity that many of us can barely imagine.
As Rebecca says in her book, what choice is there? “People often tell me I’m an inspiration. I’m never sure what to say.” She short-changes herself. She is an inspiration, as are so many with disabilities.
This post is partly adapted from my review in The New York Times: “Young, Stricken and Determined to Fight.”
For more about living with hearing loss, read my books, available and Amazon.com and Barnes and Noble, and maybe at your favorite bookstore or library.