In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.
My vision loss is due to retinitis pigmentosa (RP), which causes decreased vision in low light as well as the loss of side vision, also known as tunnel vision.
Since I was diagnosed with retinitis pigmentosa at a young age, I had time to prepare for vision loss, but did I really? No! You can never prepare losing something until it is gone. Even if I try to prepare, my vision will get worse continuously. It's hard to explain to people that three months ago, it was okay for me to ride a bike at night but now it's hard to even walk at night. Or that you could read a book all day and now you're not able to recognize any text at all. The hardest part is accepting all these losses. Have I accepted it at all? No! I'm not telling my story to show everyone how strong this disease has made me or how great life is despite all the drawbacks. It is hard to lose your vision and it's hard to accept that you're losing your independence but there is a way to deal with it. There's help out there, and there are techniques to push away the dark thoughts. My way to deal with vision loss is to be grateful not necessarily for what I can see, but for what I have. I don't pin my happiness on just one thing. If being able to see was the only thing that made us happy, then everyone in the world would be happy, despite those who can't see, but that's not true, is it? Learn to be grateful for the scents of flowers in spring, the soft beaches in summer, the colorful leaves in fall, and the delicious Christmas cookies in winter. Also, try to put your mind or negative thoughts to sleep and find things to distract you. Try yoga, go for a walk or listen to an audiobook. Just don't stay alone with your negative thoughts for too long because that will cause you to overthink and worry, which may not even be rational. Last but not least, take it one step at a time. That's the first thing my friend said when I told him how overwhelmed I was with losing my vision and, in a way, with myself. One step at a time means not looking to the future. Not trying to figure out when I will lose my sight or how I will get around when I can no longer see. Of course, it may be necessary to think about career changes, but I'll cross that bridge when I get there. Anyone would be overwhelmed if they had to learn how to use a white cane, learn Braille, and worry about inheriting a disease — all in one day. For me taking a breath and taking a step back is the key to dealing with all of this. It's still hard, and sometimes I get sad, but there are ways to combat all of this so you can continue to be happy despite all the pain.
I would be deeply grateful should you consider making a donation to fund pathbreaking research to treat and cure blinding retinal diseases like mine. Please give to Foundation Fighting Blindness to advance this important mission.