As most of you probably know, Usher 1F Collaborative raises money to help support and directly fund research for cures for the disease that I have – Usher Syndrome Type 1F. My goal is very simple: make a huge impact to raise money for a cure for Ushers Type 1F. I know that many of you do not know me personally and wonder, what does this have to do with me? I know that we are all supportive of each other’s philanthropies and I just wanted to share my story with you.
Unfortunately, I was born with Usher Syndrome Type 1F. However, my family and I were unaware of it until I was fifteen years old when we all read a news article that highlighted some of the symptoms of Usher Syndrome Type 1F that I was experiencing at the time, including ailments of my eyesight. Subsequently, we went to a retinal specialist, and he confirmed our worst nightmare: in addition to being born profoundly deaf, I also had this devastating syndrome that causes significant amounts of eyesight loss.
Since then, my life has been very different. However, after conquering my deafness with my cochlear implant, I felt I could cope with this as well. And that is exactly what I have been doing for the past 17 years. However, I made a promise to myself and to my family that if I noticed further deterioration to my vision, I would be honest about it.
Eleven years ago, I decided to give up driving at night because it was getting really hard for me to see at night. Luckily, due to my most amazing support system, including my parents, my brother David, sorority sisters, and my friends, I did not have to give up my social life. I got rides to friends’ houses and other places at night without any issues. In addition, my family and friends have been amazingly supportive, always offering their arm to help me walk in the dark as well as cruise through crowds at parties and bars.
Unfortunately, more recently, my peripheral vision has gotten worse, and I cannot see things like I used to. Nine years ago, I officially gave up driving altogether because I knew it was the best decision I could make for my safety and for the safety of others. While I know it is no longer safe for me to drive, I continue to struggle to accept the fact that I have given up such an important facet of my independence.
Six years ago, I made the ultimate choice to move to San Francisco after realizing that I could not live independently in Scottsdale, AZ, where my family resides, whereas in San Francisco, I knew I could regain some of my independence back with the ability to walk around the city, unlimited bus routes, and endless supply of ride-sharing cars as needed. It would be ideal to be able to decide where to live based off my family, career, and next life choices, but I had to weigh the biggest factor that many others do not have to, would I be able to get around easily without depending on another driver or see at night when I am walking these sidewalks, etc?
A year ago, one of my worst fears came to life as I had to get cataract surgery as my vision had completed clouded to the point that I was struggling even during daylight at work or hanging with my friends. The cataract surgery did help clear up my blurriness, but it did not help preserve my vision.
Every several years, I do notice more of a difference in my eyesight loss than I’d like to admit, not being able to see who walked into the room and I would have to move my eyes around to scan the room, tripping over my friends’ and family’s dogs, and most importantly, my nephews. My heart breaks when I walk into them accidentally and they start crying because they do not understand truly why I did not see them.
Let me explain in simpler terms in reality of what my vision currently looks like to me. Imagine, suddenly, the peephole gets smaller and smaller. You see everything in front of you, but everything above, below, and around you goes black. It's like you're looking through a narrow tube or a tunnel. This is how it feels to have “tunnel vision” -- a loss of your peripheral vision.
I am exhausted every day because I am using every ounce of my energy to move my eyes around to scan the room upwards, sideways, and downwards to ensure I do not trip over a toy, a speed bump, or an opened cabinet.
Without a doubt, my greatest fear is that I do not know what the future holds for me and for my ability to see. It is this fear that drives my determination and conviction to try and preserve my remaining vision. Therefore, I respectfully ask all of you, to join me in fighting Usher 1F.
