By Marilyn Gentile, as told to Keri Wiginton
My introduction to age-related macular degeneration (AMD) was a day of hell.
I’m 76 now, but I had cataract surgery when I was 70. About 4 days after the procedure, I had what’s called a central retinal occlusion, which is like an eye stroke. They also found macular fluid leaking into my eye.
They rushed me to a retinal specialist after that. The doctor immediately told me it looked like I had wet macular degeneration and I’d need a shot in my eye to control these thick blood vessels. Because when those form, they create scar tissue. And I might lose my sight if they didn’t stop the process.
I followed up with the retinal specialist about a week later. That’s when he told me I had dry macular degeneration in my right eye and wet in my left.
At first, I was flabbergasted. No one in my family had ever had this disease. I knew nothing about it. Nothing. And I wondered what I was going to do. I was frightened and became very depressed. Everyday life started to feel very heavy.
But I’ve since learned not to worry too much about my future with AMD. Do you know how hard that is? When I go to bed at night, I shut my eyes and I’m thankful and I’m grateful. And I think going to therapy taught me that.
Asking for Mental Health Help
Once I learned I had AMD, I made an appointment with my family doctor right away. I talked a little about my feelings during the visit. And the physician assistant mentioned that she was in counseling to manage her own depression related to chronic illness.
When she told me what she was going through, that’s when I opened up.
I talked about how I cried all the time and didn’t want to be around other people. I said I felt like no one understood what was happening to me. At the same time, I didn’t want to talk about what was going on with my eyes because I was so uncomfortable with my diagnosis.
I left the doctor’s office that day with a psychologist’s phone number. But I waited about 2 weeks to call. I was hesitant because I didn’t know if I wanted a stranger to know personal details about me.
But one day my husband heard me crying in our spare room. He came over and asked me what was wrong. I told him I didn’t know. Because I really didn’t know. I just said, “I’m miserable and I’m scared. And I don’t know what’s going to happen next.”
Finally, I got up the courage to pick up the phone.
Finding My Way Out of Depression
During the first visit, my therapist asked how I felt about what was happening. And I found it very hard to express myself. But she kept pulling stuff out of me. Then one day I just started crying. And I didn’t stop for about a half hour.
I told her I couldn’t fall asleep at night because all I could think about was waking up blind. And I felt like my life was over. Because here I was, newly retired, and all of a sudden everything came to a screeching halt.
But she helped me realize that I’m one of the almost million and a half people living with this. And I didn’t get AMD so I could learn a lesson or grow stronger. It’s just something that happened.
Though, now I’d have to figure out how to handle life with this disease. And some weeks she’d have me write a list of challenges in my life. Then she’d ask me what I was going to do to adapt or make things better. In other words, I had to work.
She also taught me breathing techniques that helped me get to sleep at night. Specifically, I learned to focus on the sound of my own breath. At the same time, I started a low-dose antidepressant. For me, the medication worked miracles and I still take it.
During the early days of my diagnosis, I kept going back to therapy to get a grip on what was happening. It was a journey and a process. But once I got treatment for my depression and anxiety, that made everyday life a little easier.
Support and My AMD Community
My therapist urged me to learn everything I could from people in the world of retinal diseases. She also encouraged me to meet other people walking a similar path.
That’s when I turned to Facebook in search of something to do with macular diseases. And I found this wonderful, comforting group called Our Macular Degeneration Journey. After that, I really started to learn a lot about my disease.
And it’s amazing to connect with other people who are going through what you’re going through.
Adjusting to Life With AMD
My husband and I love to walk an hour every day. And I can still do that. Though, now I need to wear amber-tinted sunglasses. Because if I get a really dark pair, I can’t see the cracks in the ground. And I might go ass over tea kettle, to say the least.
Another issue is that while I’ve always worn glasses, everything was clear as a bell before AMD. But now certain things can get a little blurry and confusing.
For example, when I go out for a walk, I’ll see something and it’s not what I think it is. Say there’s a pile of leaves on the ground under a tree. That might look like a squirrel to me.
One time, I thought I saw a dead cat in the middle of the road. But it was just somebody’s hat.
And when it’s still dark in my bedroom — before I go to sleep at night and when I first wake up in the morning — I’ll look up and see a grey, round shadow. It goes away, but it’s pretty spooky.
I also go to bed earlier at night because my eyes get really tired. And I read on a Kindle or a big computer monitor. I can see things easier if I can change the contrast or make the text bigger. Even the fonts on my cell phone are much larger than normal.
Each time I lose a little bit more sight, I still consider myself lucky. Because I’m 6 years into this disease, and I still have great vision in my right eye. And my left eye has remained stable thanks to the shots I get every 14 weeks.
In general, I’m much more appreciative of everything I see. I’ve also learned to live in the moment. Because if you keep worrying about what’s going to happen with your eyes tomorrow, you’re never going to experience what you can see today.