One of my favorite parts of the annual HLAA Convention is the inspiring speakers. This year was no exception. Rebecca Alexander, a psychotherapist and author, was the keynote. She has Usher syndrome, which means that she is progressively going deaf and blind. Her vision problems presented in childhood, but when she began having trouble hearing in college, she received her diagnosis. Both senses would be taken from her over time. This is a crushing blow, particularly at age 19. The way she has dealt with such a huge loss is inspiring.
It is impossible to imagine the terror of losing two senses simultaneously, but I felt myself in her shoes as she shared her journey of acceptance and empowerment. I could relate to the stories she told about her struggles and the silly and brave things she did along the way. One story particularly resonated with me — the moment she realized she could no longer trust her senses.
Learning to Love Your Hearing Aids
By then, Rebecca was 28 years old, living in NYC and working as a psychotherapist. She was feeling quite sure of herself. She easily navigated the path from her apartment to and from her office each day and did not typically use her cane along this route. But one day, she walked full speed into a pole. She just didn’t see it. She realized that she could no longer trust her senses. She would need to use her cane all the time, even on routes where she had previously felt comfortable.
As Rebecca tells the story, the first five times she used her cane after this event, she had tears streaming down her cheeks, mourning the loss of her hard fought self-reliance. But then one day, she wasn’t crying. She was walking better as she began to learn how to use her cane and regain her independence. She used to hate that cane, but now she loves it because it gives her the freedom to live her life as she chooses.
I teared up thinking of the feelings of loss she must have felt at only 28 years of age. It brought me back to the first time I got my ear molds taken, around that same age. My audiologist was gentle, yet I still remember the pain of the cotton being inserted deep into my ear canal and the mounting feeling of pressure and silence as the gel hardened. Then came the realization that I would always need to wear something in my ears to help me hear. At the time, the thought was devastating.
When Rebecca spoke about her love/hate relationship with her cane, I knew exactly what she meant, because that is how I felt about my hearing aids. At first, I hated them. I don’t think I openly cried the first five times I used them — that would have drawn too much attention to them in my still-hiding-my-hearing-loss-stigmatized state — but I certainly was not happy about it.
Over time, I began to appreciate them, warts and all, for giving me back the ability to communicate. Like Rebecca, I had to go through my own process of acceptance. It took me many years, but I am incredibly grateful for my hearing aids today. Sometimes, I even love them.
Help Yourself Through Helping Others
Now at age 40, Rebecca continues to live in NYC and work as a psychotherapist, group fitness instructor and extreme athlete. She is the author of Not Fade Away: A Memoir of Senses Lost and Found, which will soon be made into a major motion picture. She is also an ardent advocate for people with disabilities.
Rebecca loves her advocacy work. Not only is she inspiring others to live engaging and rewarding lives despite physical challenges, she is also helping herself. I believe this is true for many advocates. I love writing this blog and interacting with my readers. When I help someone feel more comfortable with their struggles, it allows me to live better with my own.
That is the power of advocacy. We all benefit from the strength and resilience of each other in ways big and small. We feel less alone and more empowered to lead our best lives. Thank you to all of you for being the advocates that you are. We are stronger for it.
Readers, when did you first feel like your senses were failing you?
Shari,
What an inspiring article about this amazing woman.
Yes, advocacy is so amazing, because it gives one a feeling of power and grace.
Helping others is not just selfless; it is also a very healthy thing to do for oneself, because it opens the heart.
Thanks for sharing this story.
So glad you enjoyed it! If you ever have a chance to hear her speak, I highly recommend it. Thanks for sharing your comment.
Yes Rebecca Alexander is awesome- very nice person. Her book is inspiring. I was more social This time around. We Deefies ( my word for hearing challenged) sure know how to have fun. Letting us loose in New Orleans next year- uh oh time. Watch out And Shari. Let’s meet next year or if in Philly this year or near.
Absolutely! Looking forward to it! Thanks for your comment.
I was fortunate to be at the HLAA convention also and to hear Rebecca speak. She was a wonderful speaker and what especially struck me about her is her infectious sense of humor. I don’t doubt that it has contributed a lot to her remarkable resilience. I just finished reading her memoir which I highly recommend. It struck me that in addition to her wonderful sense of humor she has devoted friends and family, a team of supporters.who are with her every step of the way. One of the hardest things for Rebecca was learning to ask for and accept help and I think that is true for a lot of us. Is it pride or shame or some of both that gets in our way?
Good points and an excellent question. Thank you for sharing your thoughts.