A Little Like Going Bankrupt: Coping with Macular Degeneration

When my eye doctor first told me (some 20 years ago) that I was developing macular degeneration, I didn’t think much of it. My life went on pretty normally.  

But that’s the thing about this disease. It progresses slowly over time, a little like going bankrupt. First you have $100,000, but you take out $100 every month. You don’t miss the $100, until you realize that you’re down to $1,000 and still falling.  

I kept going to my eye appointments, and my doctor kept increasing my prescription. After several years, strengthening my prescription no longer made a difference. My doctor eventually referred me to a retinologist. I noticed that the check-ins with my new doctor went from yearly, to every six months, to every three months.  

Then, 2023 happened, and things started to progress fast. A blind spot appeared in my right eye, and my dry macular degeneration became wet. I learned that I have geographic atrophy in my left eye— a condition that could leave me blind in that eye. My brain now must work pretty hard to combine the mixed signals from my eyes.  

Grieving the Loss of My Old Normal 

For years, I have taught a graduate class on organizational change. I should be an “expert” on change. When my sight loss advanced last year, I was devastated. But, with time, I thought to myself that I need to start using the very concepts I teach my students.  

What do I tell them, and now myself? Grieving a loss is okay. Divorce, death, or eyesight— you face it head on and accept what you’re feeling. You start to move through it.  

With any major change in life, you need to negotiate, make adaptations, and move on. It’s time to let go of the life-long identity that is now slipping away, and time to re-define yourself. Do so without the judgement of others or judgement of yourself. Feel confident that who you are today is fine, and that’s good for now.    

Part of this coping process has meant facing my fears. Thinking about what I fear most with what’s happening. If it does come to pass, what are my goals and what will make my life worthwhile? If my eyesight gets to a point where I can’t read, what will still bring me joy? 

There were a lot of changes this past year. I had to give up teaching that class because of the overwhelming adaptations that would be required to continue. I can still drive, but only to familiar places along routes I know. I will miss my students, but I will take with me all I have learned into this next phase of my life.  

What Comes Next After Diagnosis 

There are three kinds of doctors. Those who tell you what to do, those who give you choices, and those who sit with you in that moment and the moments that will come. The last one is pretty rare.  

You may need to decide the next steps for yourself, using your fears and goals to guide what you want in the next phase of your life.  

If I can impart anything to you, it is to get yourself a good retinologist (preferably the empathetic kind), don’t be afraid to grieve (and then move on), learn about the adaptations available to you, and deeply enjoy the vision that you have. I take a moment to enjoy mine every day, and I’ll never take it for granted again. 
 

About BrightFocus Foundation  

BrightFocus Foundation is a premier global nonprofit funder of research to defeat Alzheimer’s, macular degeneration, and glaucoma. Through its flagship research programs — Alzheimer’s Disease Research, Macular Degeneration Research, and National Glaucoma Research — the Foundation has awarded nearly $290 million in groundbreaking research funding over the past 50 years and shares the latest research findings, expert information, and resources to empower the millions impacted by these devastating diseases. Learn more at brightfocus.org. 

The information provided in this section is a public service of BrightFocus Foundation, should not in any way substitute for the advice of a qualified healthcare professional, and is not intended to constitute medical advice. Although we make efforts to keep the medical information on our website updated, we cannot guarantee that the information on our website reflects the most up-to-date research. Please consult your physician for personalized medical advice; all medications and supplements should only be taken under medical supervision. BrightFocus Foundation does not endorse any medical product or therapy.  

Some of the content in this section is adapted from other sources, which are clearly identified within each individual item of information.