by Karen and Dan Leonetti – from an episode of Hadley Presents

My wife was diagnosed with wet AMD in one eye about 4 years ago. She crumbled after the diagnosis. She expected her right eye to go the same way almost immediately and began to grieve for her lost sight even before it actually happened. I didn’t go to pieces immediately, but over the course of the next few months I coped less and less well with the idea of having a “blind” spouse. Even though I read about all the reading aids, etc., I could see how difficult our life was going to be and for a long time could concentrate only on the down side.

Eventually, I was coping so badly that a friend of mine suggested I ask for counseling at the university where I worked. This was a confidential service which he spoke highly of, having used it himself when he suffered a bereavement. What I was going through was also a bereavement of sorts: the loss of a secure future, how bad this could be on our marriage, the many losses to come, etc. The counseling came through, and I slipped away from my office desk for an hour.

I sat down with my counselor and poured my heart out about how low I felt, how bad our situation was. At the start of the second session, my counselor told me that she had Stargardt’s disease. She said she had no central vision and relied on special binoculars to travel to work. However, once at work she got around nicely, thank you. She had studied for her counseling diploma with everyone else, but had her text books transcribed onto audio tapes. She was married and had three children and some grandchildren. She and her husband had just come back from a holiday in Europe, which they had thoroughly enjoyed.

Wake up call! I had no idea from the first session that there was anything different about her at all. I realized this was not a death sentence and not about living in dark rooms and doing nothing with your life. It was about making the most of things, being glad you were alive, and getting on with it.

I can’t say I have fully managed to take all this on board and I know that my wife still has her low days. She has been doing all the right things (anti-VEGF injections, supplements, leafy green vegetables, losing weight) – she does it all, thanks mostly to things we have read and subsequently researched on MDSupport.org. We have totally remodeled our apartment and built in as many vision-friendly changes as we could. Lots of contrast where needed, good and appropriate lighting, etc. We do expect that one day those wavy lines might appear in her right eye. But this time we are armed with lots of education and support. And when the time comes, we will be ready. Most important, we still have each other.