Grateful for Macular Degeneration

I have geographic atrophy and I am centrally blind. That’s about it. Phew! Thank goodness!

Thank goodness!

I’m serious. Since my 50th high school reunion, I have had this gratitude thing going about having dry AMD. Being centrally blind is a proverbial walk in the park compared to what could be wrong. I am so lucky.

My ride home from yoga took a minute to look at our group photo from the reunion. I told her several of my old classmates are not doing that well. The group has members who have had close calls with COVID-19, cancer, and heart disease leading to quadruple bypasses. One of us is dealing with neurodegenerative disease. 18 of us did not attend for a very good reason: they are all dead.

My macular degeneration

My claim to fame? Oh, I have a medium-sized fuzzy spot in my vision. I cannot drive. I cannot read regular print and if someone is too far away from me, he looks like he doesn’t have a head. So? That’s it? Thankfully, that IS it.

I am not in pain, thank God. I get whiny when I am in pain. I have not had to endure weeks in a medically induced coma with a tube down my throat. I have not been poisoned with chemotherapy or radiation. I have not had my chest opened with some sort of rib spreader while they rooted my blood vessels and rerouted the flow.

The emotional pain

How about emotional pain? I had TONS of that at the beginning. Panic attacks are not fun. Now I am an old hand at the game of coping and adapting. And since dry AMD is a pretty slow-moving disease, lots of life is SSDD - same stuff, different day. Oh sure, I can rile myself up pretty well when I have a new challenge, but many of those new challenges are of my own making... you know, Manhattan really was fun. Do you think...?

It can't compare

I don’t think that can hold a candle to the pain of loss with a disease that slowly robs you of all functioning; do you? How can that compare to having a disease that is pretty much guaranteed to rob you of life in only a year or two? A disease in which the progression is apparent week to week, not year to year. Shudder.

Bringing up the last point of comparison I want to make. Geographic atrophy can be tragic and annoying as crap, but it won’t KILL you! We live with it and, to steal an old saying, where there is life, there is hope.

Everyone's different

This is not all to shame or put a guilt trip on anyone. You feel what you feel. My perspective, through the lenses of my experiences and privileges, is my own. Going to that reunion and seeing what my classmates are enduring was, for me, a big lesson in gratitude. A fuzzy spot in my vision suddenly seemed a whole less important than it had been.

And FYI: To put on my therapist cap for a minute, the comparison skill in DBT is one of the distress tolerance skills. It really does work.

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).