By Sue LaBar Yohey, as told to Rachel Reiff Ellis
It was over 20 years ago that a doctor told me I had deposits called drusen in my eye. They were a sign I was developing macular degeneration. At the time, I didn’t know what that was or what it meant for my life and sight.
Then some years later, I was driving and something got in my right eye. When I closed that eye to try to get it out, the car in front of me completely disappeared. My left eye couldn’t see it. I called the doctor and he seemed nonplussed. It felt as if the message was that I had another perfectly good eye, so I’d be just fine.
But my macular degeneration progression marched on at a fast clip, and soon I couldn’t see much at all — at least not very well. I called the retina specialist and he was shocked that my condition had moved that quickly. He told me my lesions had grown together, and so my brain was no longer able to fill in the blank spots in my vision. I had geographic atrophy and was now legally blind.
Take Time to Get Oriented
Macular degeneration is a progressive disease, so I knew things were going to change. I had accepted it as the way things were going to be. But this was quicker than I anticipated.
What I needed in that moment was time to take stock of my life and get myself together. I stopped driving and I took a leave from my job. I also needed a pause to feel the emotions that were coming up as a result of this sudden shift in my life. I was upset. I was waking up three or four times in the middle of the night having panic attacks.
My antidote was action. I went to my general practitioner and they started me on an anti-anxiety medication. In addition to that, I decided to find services that could help me.
I was a school psychologist for 40 years, so I knew some of the available resources for my specific needs. I called the Bureau of Blindness and Visual Services. They were wonderful. They got me a closed circuit TV magnifier, apps for my tablet — anything I thought I could use, they helped me get.
At the time, I was 62 years old. I was a professional with a job. And I had every intention of going back to that job — and I did. I knew I wasn't going to be able to do it the same way I always did. I would constantly ask my supervisor to tell me if and when my limitations were a problem. But that message never came. Being legally blind turned out not to be a barrier to me working full-time.
Reflections on My Journey
It’s been really helpful on this geographic atrophy journey that I have a background in dialectic behavioral therapy (DBT). What DBT has taught me is that you have to be adaptable. There are four ways to handle a problem: Solve it, change how you feel about it, learn how to tolerate and adapt, or stay miserable. It would be so easy to — and so many people do — go directly to the last option.
But options two and three are so powerful. Learning to adapt can change your life. If you can't go through it, you can go around it, you can go under it, you can go over it. Get there.
When my doctor told me there was no treatment for geographic atrophy (because at the time there wasn’t) and no cure, it seemed like he was saying, “Just go home and quietly go blind.” I could have let that be my message, but that’s not who I am. Instead, my diagnosis motivated me to do more.
I started doing my own research and found a doctor from the Wills Eye Institute who was only an hour and a half from me. Then I started asking about studies. Eventually they found one I qualified for, and that turned out to be the groundwork for pegcetacoplan (Syfovre), which is now FDA-approved to treat geographic atrophy and slow progression.
It took some persistence on my part to be offered that opportunity. But it also takes patience and acceptance. Treatments aren’t meant to reverse progression of the disease, only slow it. So it’s hard to tell how well it’s working. When you’re losing your sight at 100 miles an hour, how can you tell if you’ve slowed that to 70 miles an hour?
Message to My Past Self
What I’d tell my past self, now that I’ve lived with geographic atrophy for some years, is that you’re really going to be OK. Luckily, I figured that out pretty early on, and I’ve known it for a while now.
I would also tell myself that I’ll be amazed at how kind people can be. People offer me rides. They make sure I'm safe. They make sure my stuff is safe. They watch out for me. Sometimes these are people I know, and sometimes they’re total strangers. People are wonderful.
The truth is, if I had to choose a condition to have, this is what I’d pick. Most people don't know I’m legally blind unless I tell them. What I used to think of as blind and what I am now are two different things. Being legally blind doesn’t mean you’re walking around in total darkness. It just means you meet the criteria for legal blindness: having a corrected central visual acuity of 20/200 or less in your best eye, or having a restricted visual field.
Being legally blind with geographic atrophy for me means I simply have a hole in the middle of my vision (I always say you can drive a Mack truck through the hole in my vision). But every day I get up, I get dressed, I make my breakfast, and I take the bus to work. When I see clients, I tell them I am legally blind and can’t see faces, so they’ll have to let me know they're there. And then we get to work.
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SOURCE:
Sue Labar Yohey.
