Your Macular Degeneration Isn't Your Mother's, Sibling's, or Friend's

You're not your mother, father, aunt, uncle, sibling, or friend who had macular degeneration.

A big hole many of us fall into is thinking the personal experience someone else had with macular degeneration is what we, too, can expect. But you are not your mother, father, aunt, uncle, sibling or friend. Each experience is uniquely different; there are so many variables. Plus, medicine has advanced dramatically.

I have personally experienced this phenomenon with my mother who was legally blind with macular degeneration.

Mom and me: 2 peas in a pod, except...

Like mom, I was diagnosed with dry age-related macular degeneration (AMD) in my 60s, but that’s literally where our similarities ended. Had I made different choices and followed in her footsteps, I likely would have been on the same path. I’m so glad I didn’t!

Mom was legally blind and quite depressed with the loss of central vision. In her defense, she was diagnosed over 40 years ago. We have advanced far beyond what was known then, such as ways to slow the progression. Thankfully, we are aware of so much more now.

At the time, for her, it all seemed pretty hopeless. Additionally, and probably more importantly, her fatalistic attitude eroded any chance of finding joy in her life once her vision impairment advanced.

Mom was depressed and isolated

I have to admit, I didn’t realize the magnitude of her condition. I do now! I would try to show her photos she couldn’t see or ask her to crochet items she could no longer do.

What I COULD see clearly is how reclusive and depressed she had became. When a friendly neighbor would stop by to take her to an event, she refused to go because she "couldn’t see people’s faces." I would try to encourage her and tell her she could hear them and have a conversation even if she couldn’t see. Nothing worked, and she sunk deeper into depression. It was very sad to witness. I vividly recall how she gave up and isolated at home until her death.

Would I become like my mother?

Of 5 siblings, I was the only one diagnosed with macular degeneration, shortly after my 65th birthday. At first, I noticed little difference, so it didn’t concern me.

However, once I progressed to the intermediate stage, the reality set in and I was not happy. I was involved in many different special interest groups and very active. I couldn’t help but recall how despondent Mom became, and I knew I didn’t want to go that route. But how was I going to turn around the negativity that was creeping in?

Seeing a therapist

When I couldn’t pull myself out of a long funk, I didn’t hesitate to start therapy with a professional to sort things out. It turns out my biggest fear was not macular degeneration, but that I would become like my mother and lose all the joy of living.

My counselor informed me, "You are not your mother," explaining that because my approach was entirely different, my outcome would also be different. My mother was a great role model for how I did not want to live with this progressive, incurable condition. There had to be a better way.

Finding community and publishing a book

One of the first things I did was become involved with a strong, nurturing support group I found on the internet: MacularDegeneration.net. It was here I found answers to my questions and a community of people with similar conditions and concerns. It was amazing how comforting it was knowing I wasn’t alone and that others live productive, happy lives with the same condition. I started writing articles for the community. I then wrote a book titled "Co-Creating a Meaningful Life With Macular Degeneration."

Soon after, I organized a support group in our community, the V.I.P. (Visually Impaired People) Group. We meet quarterly to share information and resources. Guest speakers are scheduled for each meeting. I’m now talking with the city about duplicating and extending this forum city-wide.

I am not my mother

It is far different than it was 40 years ago, and I feel deep gratitude for all that is known today to slow the progression while feeling deep sadness that Mom did not have all those options. Unlike my mother, I am far more hopeful with all the high-tech assistance we have today, the advancements they have made, and the extensive research being done. I will continue to make the best of the sight I still have by "paying it forward."

Macular degeneration may steal our central vision, but it does NOT have to steal our joy!