Living With Geographic Atrophy
I am not a victim. I have had geographic atrophy (an advanced form of dry age-related macular degeneration) for over five years but it has not destroyed my life. It has not destroyed me. Nothing is in ruins and I am not suffering.
My life is, in fact, full
Not everything in my life is rosy, but how many people can say they have totally rosy lives? I can think of nothing in the Universe that is 100% good or, conversely, 100% bad. Being legally blind included.
I make this point because people keep saying I am suffering. And if I am not suffering, I should be. I must be lying about being alright. I must be deluded. My life must be bleak.
While there may be some justification for saying I am deluded, my life is not bleak. My life is, in fact, full and generally satisfying. I have a job I enjoy. I have a comfortable, cluttered home. I have friends and a husband who care about me and for me. I also have my dogs, Etta and Maggie, who brighten every day.
I was able to listen to the music
Over the weekend, as a post-COVID treat (fingers crossed, toes crossed, eyes crossed!), I attended a dance recital. It was outside at a local winery. I will admit I was not able to see the stage even with my Max TV glasses. By the time we got there, there was a crowd. However, I was able to listen to the music.
The sun was warm. The grass was comfortable. The wine was good and the gourmet food truck was on the scene. Yummy. Trust me: this legally blind, slightly older chick was not suffering. There was no “devastation”...I had only two glasses of wine to avoid that!
Projecting their beliefs and fears on me
Thinking about those who tell me I am suffering, I have come to realize they are all either fully sighted or just beginning this macular degeneration journey. They seem to be projecting their beliefs and fears on me. Thinking of my situation, they are the ones who are suffering.
Don't borrow trouble from the future
As some of you may know, I am now working as a therapist and my school of therapy is DBT(Dialectical behavioral therapy). DBT has recently become a hot property on one cable news network. All last week, plugging a new best-seller on DBT, the hosts would say “Don’t suffer twice”. I usually tell clients not to borrow trouble from the future. Don’t ruin now by thinking about every, horrible thing you think might happen in the future. And that was a might, not a will. Note that.
Confirmation bias
Also as of late, I have been listening to a podcast about, essentially, making our lives more fulfilling. On this podcast, the narrator - a delightful Scandinavian who cannot say “th” - talks about confirmation bias. In a nutshell, confirmation bias involves accepting data that fit with our preconceived notions and rejecting data that do not.
In short, I have decided confirmation bias is why people think I am either lying or I am delusional about my life. How can I be fine when everything they believe says I should be miserable? Reject that! That datum does not fit our paradigm. Outlier alert!
Look at your life and check the facts
So, my challenge to you is this: look at your life and check the facts. Right now, at this moment, how horrible is your life due to AMD? Do you still have good things happening but you ignore them because they do not fit what you think being visually impaired “should” be? What are you doing to increase your feeling satisfied and fulfilled?
Start noticing and expanding the positive in your life with a visual impairment. Remember: you are not a victim of AMD either.
Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).
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