Our eyes and ears are vital to guiding us through life to see and hear the world around us, but the keynote speaker for the upcoming Books & Boutiques fundraiser for the Saint Luke’s Foundation is learning to navigate through life without the help of either sense. In the process, she is assuring others they are not alone in their struggles.
Rebecca Alexander was born with Usher Syndrome Type III, a rare genetic disorder that is causing her to go both blind and deaf. Additionally, she was in a serious accident at the age of 18, broke most of the bones in her body and still experiences chronic pain from the experience.
Rebecca first went to the eye doctor at the age of 12 when she struggled to see the blackboard at school. While doctors told her then that she would be completely blind by early adulthood, 10 to 15 degrees of her central vision remains today. One day she will lose even that extremely limited vision. She first began noticing significant ringing in her ears at the age of 19, and her hearing began diminishing from there. While she is now naturally deaf, she hears with the assistance of cochlear implants.
Through it all, she lives a full and active life as an author, psychotherapist, group fitness instructor and extreme athlete who has climbed Mt. Kilimanjaro and has swum from Alcatraz to shore in the San Francisco Bay. She also devotes much time as an advocate for those with disabilities and works to raise awareness and funding to support research for Usher Syndrome, the leading genetic cause of deaf-blindness.
Whatever challenge or diagnosis a person faces, Rebecca wants them to know they are not alone. She says a tremendous sense of isolation and loneliness often comes with a diagnosis or disability, and she encourages others to find a sense of community to develop more human connections.
While she lives a full life and has come to terms with her disability, she gives herself the opportunity to process what she is experiencing.
“I allow myself to experience the loss, and I allow myself to cry,” Rebecca says. “I allow myself to express the emotions that come with a condition that causes you to go deaf and blind.”
As she has learned to accept assistance from others, she also encourages others to develop comfort with the discomfort of asking for help.
“Everyone needs help – able-bodied or disabled,” Rebecca says. “When you ask someone for help, you are not asking them to do something for you. You are asking them to help you be successful in whatever you are working towards.”
Rebecca loves connecting with others through her story and says part of her ability to own her experiences and her disability is to tell others about it. She wants people to take something from her story and be encouraged to do something differently in their lives.
“It’s an absolute privilege to be able to have what we have,” Rebecca says. “When we don’t use it, the disservice is not to anyone but ourselves.”
For more insights from Rebecca, plan to attend Books & Boutiques on May 1 at the Overland Park Convention Center. All guests will receive a signed copy of her book, Not Fade Away: A Memoir of Senses Lost and Found, which is also currently being made into a movie.
Every year Books & Boutiques supports women’s health initiatives at Saint Luke’s South Hospital, and this year’s funds will be used for enhancements at the maternity unit.
For more information and to register for the event, go to saintlukeskc.org/saint-lukes-foundation/books-boutiques.