Reversing the Negativity of Macular Degeneration

Of course, a diagnosis of macular degeneration can bring you down. Realizing it’s an incurable, progressive disease that could leave you only with peripheral vision can look pretty bleak. A timeline is difficult to know when every case is different, which makes planning for the future tenuous. We can choose to live the rest of our lives in the dark shadows of macular degeneration, or we can choose again — I chose again! Here’s what happened to change my perspective and how I found joy again.

What motivated me to shift to a positive perspective

Sadly, I witnessed the negativity and depression experienced by my mother as her vision deteriorated with age-related macular degeneration (AMD). In her defense, there weren’t the options we have today like advanced technology, support groups, and websites like MacularDegeneration.net. She was left to her own devices as her AMD advanced, leaving her legally blind. She isolated and became depressed, connecting only with those who came to her home.

The good thing that came of this experience is I knew that was NOT how I wanted to live. I did it differently — I became an advocate for AMD.

Advocacy made a huge difference for me

When I finally got tired of feeling sorry for myself, I got busy educating myself and searching for a support group. I knew I did NOT want to fall into the same trap as my mother. That’s when I found MacularDegeneration.net and began actively participating. It was a good place to ask questions, learn from other people’s experiences, and get educated. Many people start and stop here, which is fine, but I felt inspired to keep going.

After 6 months on the site, I became a contributor. I have always enjoyed writing, both personally and as part of my career. Little did I know that in the process of writing these articles about my AMD experience, it also helped me. By sharing my stories and perspectives, my outlook lightened and brightened. "Paying it forward" was a powerful tool. I felt nurtured, supported, and more knowledgeable. It didn’t stop there.

Next, I wrote a book on macular degeneration

Although I have always enjoyed writing, I never considered writing a book on macular degeneration until the idea literally dropped into my lap. It’s funny how that happens when you’re open and accepting!

A neighbor — who happens to be a self-published author — mentioned her recently published book on Facebook. I commented how I always felt there was a book in me, but I was overwhelmed by the process. She volunteered to start a book publishing group in our community, and less than 6 months later, I had my first published book: Co-Creating A Meaningful Life With Macular Degeneration. My neighbor suggested I write about my AMD journey. I am so glad I did. Hopefully it will help others as much as it has helped me! Once again, I benefitted from my advocacy. But there’s more!

Creating and leading a group for visually impaired people

Another instance of "accidental advocacy" occurred when several residents who live in the same 55+ community told me they wished they had somewhere to go to learn more about AMD, get support, and share resources. We are now meeting quarterly with featured speakers and topics for VIPs (visually impaired people). Many valuable tips and tools are being shared.

We average 30 participants per meeting. A few of our topics have included traveling as a VIP, a presentation by a local low vision organization about all the services and products they offer, and personal stories on how those with substantial vision loss are living independently and remaining active. It has been a huge success and much needed. Once again, I am reaping the benefits of my advocacy.

Yes, you can be an advocate, too!

All it takes is a desire to see things differently. Once you are open to a new way of thinking, opportunities will find you and/or you will magically start seeing things you didn’t see before.

Being an advocate is truly a win-win situation. Not only do you help others, you yourself are helped. Maybe your advocacy isn’t in AMD. That’s fine. There are plenty of other causes that need advocates. Pick one and FEEL THE JOY. Please give it a shot, and SOON!