I’ve lost something that was such a core part of who I am and the primary way that I cope with this terrible disease I have. How To Deal With Disappointment During COVID-19Īll of that being said, one of my mentors has also reminded me that it is okay to give myself permission to grieve my own loss in the midst of novel coronavirus. I broke down crying when I finally saw the lights dancing across the sky just outside of Reykjavik. I spent four hours searching for the lights, unsure if my vision had deteriorated so much that it was too late for me to see them. In early 2016, I went to Iceland on a mission to see the northern lights. When I’m not working as a marketing manager and pursuing my MBA at Vanderbilt University, I spend at least 30 minutes every day, if not more, researching all of the places I want to go and planning overly detailed itineraries. Up until recently, I was traveling the world as much as I could to create visual memories before I run out of time. I haven't mastered how to start that difficult conversation. But to this day, many people in my life still don’t know. I’ve had to learn how to tell both old and new friends what was happening to me. Knowing there is presently no cure for Usher syndrome is another emotional burden. A silver lining: My vision won’t be completely gone in a matter of months or anything. Regardless, I will likely lose most of my vision over the next five, 10, maybe 15 years. Some lose their vision sooner, while others get a few extra years. However, I know several members of the Usher syndrome community that fall outside of this parameter. In the evening, I’m always fumbling around my apartment in order to locate things like my phone, the light switch, or the doorway.ĭoctors can’t tell me exactly when I won't be able to see at all, but the general guidance from the medical community is that those with my type of Usher syndrome will have very little vision left in their 30s and 40s. In the last eight years, I’ve had to rely heavily on friends, family, and, if I have spare money, ride-sharing apps. I can no longer drive at night, so every day I look up the sunset time in order to schedule my activities accordingly. My night vision, on the other hand, has significantly deteriorated. It’s a little unnerving, to say the least. Unlike with Usher syndrome types 1 and 3, which always lead to profound or total deafness, the doctors still don’t know if or when my hearing could start to worsen with type 2. Today, eight years after my diagnosis, my hearing loss remains moderately severe. View full post on Instagram I was devastated upon receiving my diagnosis, but I also felt a strange sense of relief.Įven though I had just found out I would eventually go blind and potentially deaf, I still had time to do something about it, time to live my life as fully as I could during the years that I still had my daytime vision. Since my brother and I have Usher syndrome type 2, the doctors don’t know if we will go completely deaf, but it is certain that we will continue to lose our vision until there is nothing left. There are three clinical types of Usher syndrome, which are defined by the severity of the symptoms as well as the age in which the person starts experiencing hearing and vision loss. Usher syndrome is rooted in a genetic mutation that causes retinitis pigmentosa (RP), a disease that progressively destroys the cells in your eye’s retina, and interferes with the development of crucial sound receptor cells in your inner ear. Around the world, only about three to 10 in 100,000 people have this disease, according to the National Organization for Rare Disorders (NORD). Our diagnosis came as a complete shock to my family. And shortly after my diagnosis, my 15-year-old brother Tyler received the same one via genetic testing, but he had yet to experience any symptoms of vision loss. Usher syndrome is a rare genetic condition that causes combined and progressive deafness and blindness. At 17 years old, I was officially diagnosed with Usher syndrome. After several different eye doctor appointments, my parents eventually brought me to Massachusetts Eye & Ear in Boston to get checked out. The next clear night, I went outside and sure enough, I could no longer see the stars at all.Īs most people do when something’s wrong with their health, I Googled every terrifying explanation for why I couldn’t see at night. The breaking point for me, finally, was when it occurred to me that I hadn’t seen the stars in a really long time. After that, I started to become more aware, noticing that my eyes didn't even adjust to the diminished light as the sun began to set. That was the first time I realized that my eyes didn't seem to adjust well to the darkness of the night.
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