By Margret Krakauer, told to Keri Wiginton
My introduction to Age Related Macular Degeneration (AMD) was one hell of a day.
I’m 79 now, but I had cataract surgery when I was 70. About 4 days after the procedure, I had what is called central retinal occlusion, which feels like a stroke. They also found macular fluid leaking into my eye.
They rushed me to a retina specialist after that. The doctor immediately told me that I looked like I had wet macular degeneration and that I would need an injection in my eye to control those thick blood vessels. Because when these form, they create scar tissue. And I could lose my sight if they don’t stop the process.
I followed up with the retina 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 eye.
At first, I was blown away. No one in my family had ever had this disease. I didn’t know anything about that. Nothing. And I wondered what I was going to do. I was scared and became very depressed. Daily life began to become very heavy.
But I’ve since learned not to worry too much about my future with AMD. Do you know how difficult it is? When I go to bed at night, I close my eyes and I’m grateful and grateful. And I think going to therapy taught me that.
Asking for mental health help
As soon as I found out I had AMD, I immediately made an appointment with my family doctor. I talked a bit about my feelings during the visit. And the physician assistant mentioned that she was in consultation to manage her own chronic illness-related depression.
When she told me what she was going through, that’s when I opened up.
I said I cried all the time and didn’t want to be with other people. I said that I felt like no one understood what was happening to me. At the same time, I didn’t want to talk about what was happening 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 hesitated 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 guest room. He came and asked me what was wrong. I told him that I didn’t know. Because I really didn’t know. I just said, “I’m miserable and scared. And I don’t know what will happen next.
Finally, I had the courage to pick up the phone.
Find my way out of depression
During the first visit, my therapist asked me how I felt about what was going on. And I had a hard time expressing myself. But she kept pulling stuff at me. Then one day I started crying. And I didn’t stop for about half an hour.
I told her that 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 I was there, newly retired, and all of a sudden everything came to a screeching halt.
But she helped me realize that I’m one of the million and a half people who live with it. And I didn’t have AMD so I could learn a lesson or get stronger. It’s just something that happened.
Although, now I should figure out how to manage life with this disease. And some weeks she would ask me to write down a list of challenges in my life. Then she would 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 fall asleep at night. Specifically, I learned to focus on the sound of my own breathing. At the same time, I started a low dose antidepressant. For me, the drugs worked wonders and I still take them.
During the first days of my diagnosis, I continued to undergo therapy to understand what was happening. It was a journey and a process. But once I got treatment for my depression and anxiety, it made everyday life a little easier.
Support and My AMD Community
My therapist pushed me to learn everything I could from people in the world of retinal disease. She also encouraged me to meet others who are following a similar path.
That’s when I turned to Facebook looking for something to do with macular disease. And I found this wonderful and heartwarming 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.
Adapting to life with AMD
My husband and I like to walk an hour a day. And I can still do it. However, now I have to wear amber tinted sunglasses. Because if I get a really dark pair, I can’t see the cracks in the ground. And I could go ass on the kettle, to say the least.
Another issue is that although I always wore glasses, everything was crystal clear before AMD. But now some things can get a little blurry and confusing.
For example, when I go out for a walk, I see something and it’s not what I think. Let’s say there is a pile of leaves on the ground under a tree. It might look like a squirrel to me.
Once I thought I saw a dead cat in the middle of the road. But it was just someone’s hat.
And when it’s still dark in my room — before I go to sleep at night and when I wake up in the morning — I look up and see a round, gray shadow. It’s going away, but it’s pretty scary.
I also go to bed earlier at night because my eyes are really tired. And I read on a Kindle or a large computer screen. I can see things more easily if I can change the contrast or enlarge the text. Even the fonts on my cell phone are much larger than normal.
Every time I lose my sight a little more, I always consider myself lucky. Because I have been in this disease for 6 years and I still have excellent vision in my right eye. And my left eye has remained stable thanks to the injections I receive every 14 weeks.
In general, I appreciate much more everything that I see. I also learned to live in the moment. Because if you keep worrying about what will happen to your eyes tomorrow, you will never experience what you can see today.