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Living with Age-Related Macular Degeneration

Another interview from our Living with Vision Loss series offers hope, inspiration and insight from a client who has age‑related macular degeneration, a condition that results in the loss of the central portion of one’s vision. 

Client:  All of a sudden I decided that if I wanted to fix my life, I had to do it myself. I’ve been independent for many, many years — all of my life practically. I decided that I would have to find a way of life, that this was not the way I want to live. If I want to live, I would have to be more productive and I would have to have some meaning to my life. I would have to be around people that understood and to whom I would not have to explain every move that I made, which is very difficult. I found that once I stopped driving and became legally blind, my sighted friends, whom I’ve had for 50, 60, 70 years, decided that I was contagious.

Interviewer: Oh, my word.

Client:  So, I saw very little of them. I made a life here.

Interviewer:  That must have been very hurtful.

Client:  It is still. At my age, you lose so many people in your life. I’ve lost all of my very dearest friends. I don’t know how they would have reacted because they died before this all happened. That’s my story‑able.

Interviewer:  You think they were afraid to see you, that that might happen to them, or…

Client:  When they told me that I was going to be blind…

Of course the doctor didn’t explain that I would have peripheral vision. Frankly, he didn’t explain anything. I thought, “Oh, blind is blind.” I didn’t realize that I would still have some vision and it was not a dead end. When I finally went to a few seminars and did some studying of my own, I found that I could live on. I could be very productive, and I am.

Interviewer:  So that self‑education really seemed to be a big step for you.

Client:  Yes, but I am also a peer counselor.

Interviewer:  Oh, here at Vision Loss Resources? Really?

Client:  Yes, and I’m a peer facilitator for support groups. I have two support groups. I am on the advocacy committee. I belong to United Blind. I am one of the vice people for finance, so I have quite a life.

Interviewer: So it seems like in some ways…

Client: With metro mobility…

Interviewer:  It seems that you have been able to find meaning, almost, through this negative thing that happened to you.

Client:  Yes, I took the lemons and made lemonade, as they say. I really feel that I’m a success story. I really do.

Interviewer:  Sounds like it.

Client:  I really do.

Interviewer:  It sounds like almost, your second life in a way.

Client:  It is. It’s a whole different way of life. As a matter of fact, you know, in a way, living alone, it’s very…Well, the last 10 years I’ve lived alone, but I’ve never really in my life before have really been alone. I’ve always had companionship until the last four years. My life has been, you know, rather full. I have two children, two grandchildren. I worked 27 years of my married life.

Interviewer:  Do you find just getting around through day‑to‑day life that people respond to you differently?

Client:  Yes, but I do things a lot alone, but when I’m alone I use my cane. When I grocery shop, I take Metro. I go right up to the counter and I get help. They take me around and they’re just lovely people that help. It makes life much happier, makes it happier and much more comfortable. I do find that being in a large group is very stressful because I don’t know who I’m talking to and this is true for all of us. We find that being with a lot of people can be very stressful because somebody will talk to you and you have to say, “I’m sorry, who are you?” That can be kind of trying at times. “What do you mean? I’ve known you for 50 years. What do you mean you don’t know who I am?”  It can be very trying, but it happens and you just deal with it like every day. [laughs]

Interviewer:  What advice would you give to somebody that’s just discovering they are losing their sight?

Client:  You have to go through all the stages. You go through shock and anger and fright and loss. They are all of the things you go through and there’s nobody that can shield you from that because that’s part of the process. That’s part of the healing. If you talk, you have a much better chance of healing. This is a progressive disease. Each day I wake up and I see something I don’t see any more. In my own home I don’t think about it when in my own environment. When I leave my house and I don’t know what direction I’m going in, then I know what’s happened to me.

Interviewer:  Thank you.


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