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 name is Stephanie Fineout. I am 36 years old. 12 years ago, I was diagnosed with a rare eye disease known as retinitis pigmentosa. I started noticing slow changes in my night vision and needing others hands in the dark in the beginning years of high school around 2001. Then during my senior year, 2003-04, is when I started noticing more of a decline, especially with depth perception and my peripheral vision. It became quite noticeable during volleyball season while that white ball that was once so clear to me had suddenly vanished . But, I just assumed I needed contacts and went about my life.
As time went on, my family began to notice I was a tad clumsier — running into things right in front of me, dropping things and not being able to find them, not being able to walk unassisted in the dark. So, my dad finally said it was time to go to the eye doctor towards the end of summer in 2010. I recall that appointment as if I had just went yesterday. It was Thursday, August 5, 2010, that I walked into an eye appointment thinking I just needed glasses and walked out with a diagnosis that would change my life forever. After taking the vision field test about 5 times during that appointment and failing it each time, the nurse gave up and in walked the doctor. He took a look inside my eyes and asked if I had ever heard of retinitis pigmentosa. I left that appointment feeling very confused, scared, and alone — not knowing much except what I had googled about the disease. He referred me to a retina specialist at the local hospital who confirmed in November of 2010 that I did in fact have retinitis pigmentosa.
I did not know much about the disease at that time, just that it “leads to blindness”, so with my emotions all over the place, I recall many nights of crying in fear of my future. At that point, I had a 4 year old daughter and all I could think about was her. I spent years learning more and more about this incurable disease. I traveled to numerous eye institutes around the US in search for hope. I became a mother of 2 in 2012, along with becoming legally blind and having to give up my license and a huge part of my independence.
Fast forward to today, 2022, 12 years later — this disease has taken a lot from me. I have no peripheral vision, I cannot see in dim, low lit areas, total night blindness, photophobia has taken over so bright lights have become an enemy to my eyes as my light receptors are all damaged and can no longer process the light, and my cones are becoming more damaged causing my vision to be fog-like. I found out at my last apt in Dallas that my left eye acuity took a major dip in 2 years going from 20/220 to 20/500 and that my tunnel vision has declined to about 1° which has been very hard for my family and I to process. I visited Lighthouse of Louisiana this past year and received some amazing insight on tools available for the visually impaired. It was so encouraging leaving that appointment knowing how many things were available to me so that I am able to live my life fully despite my disability. And, I recently finished my white mobility cane training through the Lighthouse of Louisiana in hopes to regain some of my independence back, which is a big step and something that will continue to push me out of my comfort zones.
Acceptance is hard. And I can’t say if I’ve honestly accepted this fully. I have really hard days. More often than I let on. Days where my eyes are so tired from straining to see and all I want to do is close them and it all just go away. Days I break down and cry at how unfair life is. The heartache that comes with not knowing if I’ll see my daughters graduate, walk down the aisle, or my grand babies faces. I’m furious at the things I cannot do — easy things like going to the bathroom safely during a movie in the theater or going to check my sick daughter out of school. I have days where I ask why me. But. This is my life and I cannot change this broken road I’m walking down. So I refuse to feel sorry for myself, not when there are so many out there suffering in real physical pain. I want to set an example for my girls, that no matter how hard life gets, we never give up.
The only thing I really want to make aware is that I would not be where I am today or as strong as I am without my amazing support system. Every single person in my life who has not allowed me to give up and has been there to catch me (literally), even the ones no longer here, they are my heroes. This is not something you can get through alone. It takes help and it takes asking for help and accepting help. It takes teamwork and it takes understating and patience. I continue to be incredibly grateful for the beautiful things I have seen so far in this life and am still able to see every morning that I wake up. This disease does not define me and it does not get to control my life. Life with RP has been full of tears, bumps, bruises, fear, anger, questions, and uncertainty. But above all of that, it's been 12 years of love, support, guidance, help, strength, bravery, and faith. I will continue to look for the light in the dark and no matter what — I will walk by faith, not by sight.
Treatments and cures for blinding retinal diseases, like the one I have, are right around the corner! The science is here. All that's lacking is the funding. I believe that the Foundation for Fighting Blindness is at the forefront of this hope. Join the cause. Please donate today.