Self-Acceptance | Own the Equinox, Day 24, Part II

September 17, 2015

By Rebecca Alexander

California native Rebecca Alexander was born with Usher syndrome type III. Rebecca is a psychotherapist, keynote speaker, author, fitness instructor and athlete who holds two master’s degrees from Columbia University in Public Health and Clinical Social Work. Rebecca currently sits on the Disability Rights Advocates (DRA) New York Board of Advisors. The DRA is one of the leading nonprofit disability rights legal centers in the nation with the mission of advancing equal rights and opportunity for people with all types of disabilities nationwide. Rebecca’s memoir, Not Fade Away: A Memoir of Senses Lost and Found (Avery) was published in September 2014. Rebecca has been featured on many media outlets including The Today Show, The Meredith Vieira Show, The Dr Oz Show, Morning Joe, the New York Times, the New York Post, Fitness magazine and Glamour UK magazine. She maintains her psychotherapy practice in New York City and lives with her mini goldendoodle Olive. Rebecca recently returned from hiking mount Kilimanjaro in July. The paperback version of her book released Tuesday September 15th!

Rebecca and Olive
Rebecca and Olive

I vividly remember watching television many years ago when I heard a man being interviewed. He had been paralyzed in a terrible car accident 20 years earlier and therefore used a wheelchair.

I remember him telling the interviewer that despite the many challenges he’d faced and the adjustments he’d had to make over the last 20 years, his life was much fuller and richer than it had been when he was fully able-bodied.

I couldn’t believe it. I mean, I wanted to believe it. I wanted to agree with him and feel comfortable telling anyone openly that not only was I both visually and hearing impaired; my life was better for it. But I didn’t believe it.

I spent years doing my best to appear as able-bodied as everyone else. I exercised rigorously and studied as hard as I could so that nobody would know that there was something“wrong” with me. And, I was fighting back. I believed that if I did all of these things I would somehow be able to overcome Usher syndrome before it overcame me.

I could never have imagined that I would have to lose a lot more vision and hearing to fully understand what the man in the interview meant.

I had to lose the ability to do many of my favorite activities--playing soccer, listening to music without the distorted sound hearing aids and a cochlear implant created, driving a car, or hearing a whisper.

I had to experience my emotions and all of the sadness, anger, fear, frustration, and uncertainty that came with each loss.

I had to do this because trying to avoid feeling my emotions wasn’t working. More importantly, I was making my life even more difficult for myself by avoiding my emotions.

In the past I'd rather people thought I was drunk or spacey than visually and hearing impaired. It sounds silly when I think back on it, especially because of how much extra effort and energy it took to pretend to be something I wasn’t.

I started using my cane slowly—mostly at night at first and then during the day when I was in particularly busy places, like the airport or a train station. I must have cried the first 5-6 times I used my cane in public. I can only imagine what I looked like but it didn’t matter. I had to go through this process, even if it meant crying while using my cane in public. I felt so exposed, so vulnerable, and just sad. Sad that the diagnosis I had been given many years earlier was real.

I remember at the age of 15 my mom wanted me to meet a woman who had RP (retinitis pigmentosa-the condition that causes vision loss for people with Usher syndrome). The woman came to my house to visit with me so that I could ask her questions or speak to her about what it was like to go blind. She was 36 years old-the same age I am now. I didn’t want to ask her questions and I didn’t really even want to meet with her. I was a teenager and being an adult seemed light-years away. I couldn’t imagine myself being like this woman and I certainly didn’t want to.

Now, at 36, I am likely much like this woman in terms of my visual needs—I feel much safer and walk much faster when I use my cane and I’m not ashamed of it. In fact, my life is so much richer, fuller, and more interesting than I ever could have imagined it to be. I am much more comfortable with myself now with 10 degrees of vision, a hearing aid, and a cochlear implant than I ever was when I had so much more of these two senses. But there was only one way for me to get to this place and it had to come from facing my own discomfort and feelings about what was happening to me.

I am still on this path towards self-acceptance, like everybody else. Having Usher syndrome humbles me not just every day but often every hour and sometimes even by the minute. I am so grateful for what I still have and hopeful for what may be in my future (treatment, a cure, or simply doing my best to live with what I do have).

I could never have imagined myself understanding or even relating to the man in the interview I’d watched many years ago. And yet, here I am. As fulfilled and at peace as I’ve ever been—doing the best I can to live my life to the best of my ability.

I will celebrate Owning the Equinox this Saturday by taking my dog Olive to Central Park with my best friend. 

I’m so proud to be a part of this monumental day and I am psyched to get back on the road for my national speaking and book tour next week. As the newest member of the Disability Rights Advocates (DRA) advisory board, I am really looking forward to improving and normalizing the needs of the deaf/blind community and people with disabilities in general.

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.

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