I never knew why I was born deaf. Until receiving my first cochlear implant at age 3, all I knew was silence. I never experienced the sense of loss of my hearing. When I was fifteen years old, I found out that I had Usher Syndrome Type 1F. It explained why, for years, I was struggling to see in dark places and straining to see peripherally. It also meant that my vision would get worse. I initially feared that I would be denied the life of a normal teenager. Did this mean that I would not get to have a driver’s license and drive around like I had planned? Learning this was earth shattering. I was angry and resentful. I felt that I had worked hard to learn how to speak and listen. I rely on lip reading and listening skills to understand conversations. Would this mean I would no longer be able to see faces and read lips...so vital to my communication skills? Many questions went through my mind without clear answers. Thankfully, I had supportive parents who trusted me to share with them my feelings and the true state of my vision.
I made the tough decision halfway through my senior of college to give up driving altogether. I asked my Dad to sell the car during winter break so I would be spared seeing the car leave, taking my independence with it.
Initially, I felt shame for having Usher 1F. I didn’t want my friends to feel burdened to guide me and shield me in dark settings. I worried needlessly since my college friends welcomed the opportunity to help and automatically took my arm to ensure I didn’t trip or bump into things.
Realistically though, I had to plan my future and career choices on living where I could live independently. It meant moving away from Arizona and my home and family because of this disease. I focused on San Francisco because I knew that it was close to home. I had many college friends that lived there already. Most importantly, it offered great public transportation! I moved out there six years ago...best decision I ever made. It took me some time to get used to those hills, but thanks to those, I have strong calves!
I became part of this amazing community at a gym earlier this year, Project 13. When I told them about my balance limitations and struggles, they refused to let that deter me from participating. They created a safe community for me to work out. Earlier this year, when I asked if they would consider letting me host a workout fundraiser there for Usher 1F research, they said “yes” without hesitation! They shared my story with all the members, and we had over 50 people join us raising over $6000! I was so grateful to have such a great support system in San Francisco. It boosted my optimism for a bright future.
Despite maintaining a positive outlook that a cure for Usher 1F will be found, I was hiding something earlier this year from myself, my family, and my friends. I knew that my eyes were getting worse but was too scared to face the truth. I did not know if I should visit my retinal specialist, Dr. Stone in Iowa, to confirm my fears or just suffer silently and hope for the best. For the past six months, I knew that I was feeling more uncomfortable in my workplace, my home, my daily walks, and evenings out with friends. I just didn’t feel safe anymore. Now I dread going out at nighttime or being in dark settings. I struggle reading books even with glasses, reading the close captioning on television, or even reading emails and text messages on my phone.
Imagine trying to look through smog or haze...that is what I am experiencing right now. Last month, I received my annual eye exam and learned my cataract condition is really bad. My eye doctor confirmed that my central vision has deteriorated so badly...it’s like looking through a snowstorm.
So another shoe drops...another setback. I understand that cataract surgery will restore my central vision to its former clarity. However, this early onset of cataracts was caused by having Usher 1F. Sometimes all these setbacks shake my confidence that I will be able to continue living a happy productive life. It also feels like a wake-up call to what my vision will become without a cure. It’s frightening! This realization motivates me to continue to fight to find a cure not only for myself, but for all affected by Usher 1F and the future generations that will inherit this condition. No baby, child, or adult should have to be burdened with deafness and blindness. I invite you to help me find a cure for Usher Syndrome Type 1F. Please join our crusade to end this disease that robs us of both sight and hearing.