Learning Through the Tough Stuff

Living with my wet AMD (age-related macular degeneration) has been a time of adjustment and acceptance. The shock of the diagnosis. The acceptance of the reality of the injections. The need to find ways to compensate for the changes: adding more light in work areas, wearing heavy-duty sunglasses, and dealing with changes in depth perception.

Adapting to AMD

Over the past 2-plus years I have worked at developing a positive attitude: accept, adjust, adapt. “Just because you can’t do X the way you once did does not mean that your life is over,” I have said to myself more than once. Change happens. I repeat the words of Dylan Thomas in his famous poem, 'Do not go gentle into that good night':

Do not go gently into that good night
Old age should burn and rave at the close of day;
Rage, rage against the dying of the light.

Thomas was talking to his father about old age and dying. I read into his work aging and the loss of vision.

But then... Something happens that is more difficult to accept. For me, it was at church about 6 weeks ago.

Losing confidence

I had volunteered to read a lesson. It was something I was good at before, and I thought that if I copied the material into large type (the text of church bulletins rarely comes in large type) and practiced, I would be okay.

But when I stood up to read, I stumbled, missed words, and misread a phrase. Nothing is worse than silence when you are trying to get back on track.

When I finished, I went back to my seat and cried.

Self-image and AMD

Now, no one said anything to me about how I had read. It was my standards that I had failed to meet. It was my ego and self-image that had been damaged.

Comparing myself

Since that morning, I have been there when other people, fully-sighted people, stumbled in their readings. Some could be actors, they read so well. Others could barely be heard and seemed afraid of the microphone.

It has taken me a good long time to write this. And it is a good thing it did.

Taking cues from unexpected sources

As I typed those last words, I remember the story I wrote about the actor Dame Judi Dench and how she dealt with her AMD. She has friends who help her with her lines. She makes accommodations. BUT, and that is the big BUT, she has not let the disease keep her from doing what she loves and that earned her the honor of being Dame Judi Dench.

Movie actors like Dame Judi have the luxury of multiple takes, of course. When you’re reading at church and it is being live-streamed around the world, it feels different.

What can I learn from this?

The question is, what will I do with my experience? Will I continue to cower in a wardrobe and never try again, afraid of making mistakes, afraid of embarrassing myself in public, of feeling like a fool?

To be honest, living with AMD can be, and often is, tough. We live with lots of challenges, some of them more difficult than others.

I have learned several things from this experience. At the top of the list is that writing about my feelings helps to put the event in perspective. The second is that next time I will work even harder to be prepared. Practice, practice, practice. Third, there’s a community of people who are dealing with similar issues and experiences and to whom I can turn for support and understanding.

Most important of all, it was not and is not the end of the world.