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A Personal Story on Living with Vision Loss

Shirley, a client with age-related macular degeneration, shares her story about vision loss and how she coped. As devastating as it was to lose her sight, today she does more now than ever before.

:  The first thing I want to ask you is how you found out about your vision loss?

Shirley:  I didn’t even know that I had a problem with my left eye until I was mowing the lawn, and I poked my eye with a bush. When I went in to see what was happening, I could see there was this blind spot everywhere I’d look, the blind spot went there.

I quick called the eye doctor and the gal said, “That’s just floaters.” I said, “No, this is not a floater. There’s something really wrong.” When I went in and the doctor examined me and told me I had the wet macular degeneration. He said, “I am not letting you leave this office until we make an appointment with a retinal specialist.” That was really scary.

I remember going to the doctor and he said, “Down the road, Shirley. You’re not going to be able to read and you’re not going to be able to drive.”

I said, “Can you tell me how long?”

He said, “No, I really can’t.”

I told him I was in the process of buying a new car and he said, “Stick with the old.”

That was really scary, but then my daughter was with me and we said, “Where can we go to get help with this?”

He said, “I don’t know.”

We asked at the desk and they said, “We don’t know.” To my daughter and me this was so devastating because here I am, not going to be able to read or drive. We didn’t know how I was going to cope with this.

Then my daughter discovered Vision Loss Resources in the yellow pages, and we called and scheduled an appointment. Someone came out with a magnifying glass, and they set me up with Metro Mobility, but I have to tell you, I guess forgot this, it was really devastating. For a while, my friends were afraid to even call me because if I talked about it, all I did was cry. It was just really…How am I going to handle this?

It’s the first time in my life that I’ve really allowed myself to really breathe. Because of that, it helped me accept it. It’s so important that you do have that grieving process because it is a big loss.

I did think my life was over until…Thank goodness, Frank did not give up on me. He has an independent living skills here at Vision Loss Resources. It’s a class that you take once a week for five weeks, and it teaches you all kinds of coping skills.

I got in this class and there were five other ladies in the same situation I was. It was just so helpful. We became very close friends. We started going to lunches and things together. It was just nice being with someone that was in the same situation that I was.

Interviewer:  When this was first happening to you, did you feel like you were losing your independence?

Shirley:  Yes. That was so hard because I’ve always been an independent person. When I thought I was going to have to be dependent totally on other people, it was really hard. I remember that Christmas I wasn’t able to read my Christmas cards because they would write them in red and green ink. At that time, I could read a little bit. I remember that they had gone shopping and then bought a teddy bear.

That night, I was so frustrated, and I sat in a rocking chair and hugged the teddy bear and cried. That helped to get some of the frustration out.

Interviewer:  I’m sure. Have you found that it’s been hard, especially in the beginning, that people were treating you differently when you lost your vision?

Shirley:  Yes, most people were real [laughs] …My children, I have six children, and they were wonderful. Unfortunately, I was angry and I’m afraid I did take some of my anger on them, but they did accept me.

They kept bringing me different kinds of pens to write with. I would need a bold black pen. My son wanted to get me a miner’s hat that had a light. If I wanted to read it all, I would had to have this really bright light, and so he was going to get me a miner’s cap but it was really fun because they kept coming up with all these ideas, trying to help me cope with it.

Interviewer:  That’s good. What about strangers, people that you are meeting, or if they weren’t your immediate family? Did you feel they were treating you differently?

Shirley:  Friends were, some were. In fact, they almost wanted to take too good care of me. I didn’t need help, I’d say no. If I need help, I’d ask for it. Some were very condescending and they would say, “It’s right there. It’s right there.”

I’d say, “I can’t see it.”

Then other times, I would check something in my peripheral eye and they would say, “She can see a lot more than she says she could see.”

Interviewer:  [laughs]

Shirley:  It’s so hard to explain. You can see and you can’t see.

Interviewer:  You’re in between, in a way.

Shirley:  Yeah.

Interviewer:  When you came here, what did you do with the shared experiences you had with other people?

Shirley:  When you would say, “I can’t see this” or “I can no longer do this” they would know. Sometimes, they would give you helpful hand, something that might help you. Also, through Vision Loss Resources, a peer counselor would call me and she would talk to me if I had questions or problems. Then she would tell me how she handled that or she had suggestions for how to do it. That was very helpful.

Interviewer:  It sounds like that would be really useful.

Shirley:  It really was, and we had someone to talk to that knew where you’re coming from. Your friends and family, they know something is happening, but until it happens to you, you really don’t know how devastating it can be.

I started doing crafts again and my children were thrilled because they knew I love doing crafts. I remember my son calling me and he said, “Mom, what are you doing?” I sad, “I’m having a nervous breakdown.”

Interviewer:  [laughs]

Shirley:  He said, “What do you mean a nervous breakdown?”

I said, “When I was in nurse’s training, people had a nervous breakdown, they’d go to hospital, make baskets.”

Interviewer:  [laughs]

Shirley:  Every time he’d call, he’d say, “How’s your nervous breakdown coming, Mom?” [laughs]

Interviewer:  [laughs] That’s sweet. Is that something that’s easier to do with vision loss because it’s about texture, or how is it that basket weaving is a good art form?

Shirley:  For one thing, you can feel. In our class, we have totally blind people and they make beautiful baskets. In fact, I would have problems because I can kind of see but I can’t and it’s better.

Frank [the instructor] would keep saying, “Feel, Shirley, feel rather than trying to see it.”

Not only do you lose that central vision but your depth perception is off. You see things differently. You have to really be careful going down steps or anything, because you can’t see just exactly how deep the step is.

Interviewer:  Are there other things, other art forms that you picked up?

Shirley:  We did some beading, and I was doing dolls. That’s really fun. You feel creative, you’re making something. In Frank’s class, he did teach us how to thread a needle. There are many different ways and he showed us ways to do it. Being short, I have to hem all my slacks. I do it.

I said, “If my Home Ec. teacher could see what I’ve done, she’d turn over in her grave.”

I have this feeling, “I did it myself.” In fact, I’d say to my friends many times they want to do things for me, and I’d say, “No. I feel like a two year old. I want to do it myself.” That, to me, was taking some control. I want to do whatever I can. I appreciate their help but, “Let me do it if I can.”

At first, when this happened, I had given up cooking. I can remember when I moved into a condo, Frank’s class gave me enough confidence and I said, “Hey, I can do this.”

Interviewer:  I can imagine the small details and that being really, really useful.

Shirley:  Also, he taught us so many things, like pouring a glass of water. You can’t really see that, but he taught us how you put the glass up to the rim and pour it. You can also hear if the glass is full. You learn to use your other senses.

Also, at home, it’s very helpful to use contrast. If you’re serving white rice, serve it in a dark bowl. If you’re pouring coffee, don’t pour it in a brown cup because you can’t see it. Contrast is really important for us.

Interviewer:  That’s interesting. Those skills must have been really great.

Shirley:  It was so helpful. Like I say, it’s just all of a sudden, “Hey, I can do this.”

Interviewer:  How long was it before you found Vision Loss Resources, what was the time period for you. 

Shirley:  I found it right away, but we’re in the process of moving and everything. Then I really hadn’t started coming down here. I don’t know why. I just said, “Thank goodness, Frank did not give up on me.” Because he’d call and offer the class, and I’d say, “I can’t do it now.”

He’d say, “OK, I’ll call you later.”

Finally, I said yes and I was so thankful because it’s just so wonderful.

Interviewer:  Were you living by yourself at this time?

Shirley:  Yes, I’ve been a widow for quite few years, ten at the time. I decided I didn’t want to stay in my home if I could no longer mow the yard, which I loved doing.

Interviewer:  In terms of getting around, you use Metro Mobility. Is that what you’re saying?

Shirley:  I love Metro Mobility. I don’t know what I’d do without it. Many people complain about it. Yes, sometimes they’re late and sometimes you get on the bus and you go all over town. I see parts of Minneapolis I didn’t even know existed. It’s just such a wonderful way to get around. There’s no way I could expect my children to leave their jobs and take me all these places that I want to go, because we do go quite frequently.

Down here at Vision Loss Resources, there is a community center, we have what we call a supper club and a lunch bunch. We play cards and there are just some kind of activities going on all the time. We’ll go to Godfrey and they have what they call audio‑described performances. It’s wonderful.

They also have what they call a sensory tour before the play. We come early and we go down by the stage. The describer will tell you what the play is all about but then you can go up on the stage and examine, touch the furniture, touch the costumes. It just brings a play alive for you.

Interviewer:  I can imagine.

Shirley:  There are so many services. This might sound kind of silly, but having this happen to me is devastating as it was, there are so many things that have happened in my life that I’m doing now than I ever did before.

A lot of it has been because of as you can tell, I love Vision Loss Resources. There have been so many things going on, and they offer so many things that you can go to. Like I said, I’m doing things that I just never done before.

Interviewer:  There is a silver lining in the cloud.

Shirley:  Yeah. It happens and it’s very devastating at the time, but then once you accept it and go on, there are a lot of opportunities out there for us. People tell me how much they admire me for the way I have accepted what has happened to me and continue doing all these things, which, to me, “Why wouldn’t you? I’m certainly not going to sit home and just throttle my thumbs or what have you?”

Interviewer:  Are there things that you would want to tell somebody who is at the beginning stages or just starting to lose their eyesight? Anything that you would offer them?

Shirley:  To say there is hope and I know how you feel. It’s okay to feel bad and it’s okay to cry. Every once in a while, I have a good cry. You get so frustrated. Sometimes people say very hurtful things. If I just have a good cry, then I’m okay again. I let go.

There is hope. Ellen [a grief counselor at Vision Loss Resources] says, “You think your life is over and it is, in a way, as you used to know it, but there is a new way out there. You have to be willing to take it and to do it…”

Interviewer:  Take the risk.

Shirley:  Yeah.

Interviewer:  I get it, and do it. It sounds like you’ve been really successful at. Thank you.

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