Lately, I’ve been hearing a lot of people in the RP community discussing the fear of going blind, also known as Scotomaphobia. A phobia implies an irrational fear, but what do you call it when you are going blind? It is not irrational, it is a legitimate fear of the future and how blindness will inevitably change your life.
I’m not sure when the fear first sets in. When you are first diagnosed with a degenerative eye disease, you can live in denial for quite some time. Then changes start to set in, and the debilitating part of the disease begins to show. First, there is the embarrassment of tripping over things or thinking you see something that just isn’t there. You lose your license. You try not to use the cane because that means you accept your fate. Then the questions about what you will do when you can no longer see. Will I be a burden on my family? Will I be able to cope? How will I feed myself? Do I have any right to force my fate on my significant other, my children? Do I consider having children when I could pass the disease on to them? If single, what are my prospects of meeting someone who will want to share their life with a blind person?
So many questions, so few good answers. With RP, each case is different – we hear that a lot, but it is true. As for each of us as human beings, we are all different and must cope with our personal circumstances in our own way. Each day is a new experience, each week a new discovery, and then things settle down again until the next major jump in the deterioration. We don’t know when each loss will happen, so we hope that it won’t be for a long while and we hold on to what we’ve got with an iron grip, knowing in the back of our minds that it will slip again. Knowledge is power, it gives stability, but with RP there is limited knowledge, with so many different genes that can be affected and each on manifesting the disease in a different way, the details of each is impossible to curate in an easily accessible way.
This constant fear, the sense of loss that accompanies our daily lives is the hardest thing to cope with. We adapt, physically and mentally to the degeneration, but emotionally, that is another story altogether. It can be like a dark cloud hanging over our heads, torturing us in moments of weakness. We all handle that differently too, but we all experience it. That is why having support groups is so vital. Knowing that we are not alone eases at least some of the pain.
The other thing that we must appreciate is that we know that we will go blind. We have the opportunity to feast on the beauty of the world and build a library of visual memories we can revisit for the rest of our lives. It’s hard to recognize just how lucky we are that we have such a long period of time to adjust to the blindness and to take in everything we can before the inevitable hits. Some people go blind literally overnight and don’t have the opportunities that we have. RP is not a death sentence and being blind is something we can adjust to. The build-up is often worse than the actual outcome. Our fear is founded on the reality that it will happen, but our hope is that before it can happen there will be a cure. While we wait we must take the time to look around, drink in the beauty that surrounds us – our loved ones faces, the gorgeous flowers, beaches, forests, architecture, animals everything….drink it in and enjoy every moment of the vision you have, and once it goes remember fondly those images you’ve taken the time to capture in your imagination. Be grateful for what you have now, it is a gift.