By Patricia Barbe, as told to Rachel Reiff Ellis
A generation ago, my mother had macular degeneration. Although I was around her then, I didn’t fully appreciate what it was like for her to live with low vision. The only time I was aware of her struggle was when she could no longer read. She was an avid reader, and losing that bothered her terribly.
Now that I live with geographic atrophy (GA), I’m amazed how little she complained. Things like cooking, or knowing if you’re holding shampoo or conditioner in the store, or being able to read a book to your granddaughter – all are more difficult when your central vision is impaired.
You have to learn how to navigate things in a new way. As you do, you’ll be under the care of doctors who’ll give you medical help and guidance. You’ll have friends and family who want to offer advice. Some of it will be helpful, some of it won’t.
I often think about a book I read about a blind man who made it out of one of the Twin Towers on September 11, 2001. The stairwell he was in lost power and everything went pitch black. He said to everyone there, “Don’t worry, I’ve got this.” He was used to navigating the dark. In that situation, he was the best one to take the lead.
Ultimately, you’re the one living with GA. A lot of what you know about your needs and abilities are learned through lived daily experience. You find out over time what serves you and what may not.
Advocating for Yourself
My late husband and my father were doctors, so I’m perhaps less intimidated by medical experts than some. It can be easy to feel like you’re just there to listen and do what you’re told. But your voice matters, too.
Always have your list of questions with you at your doctor’s visits. Try to find a doctor you connect with. Consult them and keep them in the loop about anything that’s going on. Make informed decisions for yourself once you do.
For example, I decided I wanted to take part in a program run by a macular specialist. It focuses on nutritional supplements and vision. So I talked to my optometrist and retina specialist about it, and their stance was, “These vitamins aren’t going to cause you any harm, but we don’t know if they’re going to help you.”
So I considered the information I had and decided to try them. Then, my retinal specialist was reluctant when I asked him to send my medical records to the clinic where I’d get the supplements. But instead of wavering on my decision, I said, “I'm the patient, and you've told me that what I’ll be taking will not hurt me in any way, shape or form. This is what I’d like to do.”
This led to a good chat about my decision, and an understanding that we were working together on what was best for me.
Well-Meaning Advice
Ironically, one piece of advice I held onto for a long time, that turned out not to be helpful, was from my mom. She’d always told me glasses couldn’t help if you lost your central vision.
As it turns out, I started having trouble seeing things like street signs when I was driving. In hindsight, I should’ve asked about glasses earlier. My optometrist prescribed me glasses two years ago. They made a big difference in the part of my vision I still had.
Not everyone you encounter on a daily basis will understand what GA is, or how it affects your vision. Because I have glasses, sometimes people assume they’re the answer when I can’t see something.
Recently, I went out to a fancy tea with a woman and her daughter. I had trouble seeing the menu. I asked the daughter if she could tell me what teas they had. She said, “Well, you could put on your glasses, they're on your head.” I was embarrassed that she thought I just forgot my glasses were on my head.
In reality, the issue was that even though the menu was quite lovely, I’m sure, it didn’t work for me and my GA. I can usually read fine, but words have to be plain type, not in colored ink.
Accepting Help
I'm someone who gives others a lot of help, but I'm not very good at asking for help myself. I’m used to being the helper. I enjoy doing it. Receiving it is a different story.
Sometimes, it’s good to know when to accept advice or suggestions. I often walk home from my retinal specialist appointments after getting my eyes dilated. To me, it makes sense. I can’t drive with dilated eyes, so I’ll just walk. I’m careful. I walk a block over from the main street so I’m not near lots of traffic. But when I told a friend I did this, she got mad: “You can ask for a ride!”
It wasn’t that I hadn’t thought of that. I didn’t like to ask for that kind of thing from others. What I’m learning is that when you’re honest with your people – your friends, family, co-workers, and doctors – it lightens your load.
Once you open up, you may feel more comfortable asking for what you need. In my experience, people are happy to help. We don't know if we’ll see for five years or five weeks, so take advantage of everything you can.
Show Sources
Photo Credit: iStock/Getty Images
SOURCE:
Patricia Barbe.
