	April 1998

Age and Vision Loss:

Peer Support Groups, What We Say

By John Sutton, Ph.D. and Joan Fobbs, Ph.D.

Dr. John Sutton is a retired psychologist living on Maryland's Eastern Shore. Dr. Sutton is a member of MDTAP's Advisory Committee. Dr. Sutton has partial vision and partial hearing, and uses the internet and computers via speech synthesis.

Dr. Joan Fobbs is a college professor and Director of a rehabilitation program at the University of Maryland Eastern Shore (UMES). She oversees the operation of MDTAP's Eastern Shore Regional Services Program.

The Age and Vision Loss: Peer Support Groups, What We Say project is an outgrowth of two years of data collection from recorded and non-recorded discussions among members of several blind peer support groups. Many quotes represent the uninhibited thoughts and expressions of the members of three characteristically different groups located in the Delmarva area. The age range of the participants is from the mid forties to ninety years old. The stories and quotes recount experiences with various stages of blindness and the themes span a lifetime. The value of these expressions has sustained the groups who come seeking a very different way to share intimate and sometimes personal conversations about a lifestyle and related experiences which they feel can best be understood by individuals who themselves are adjusting to varying degrees of vision loss. The members of the groups have a range of vision loss diagnosis. For some of them the blindness resulted from a genetic predisposition which lead to childhood onset of progressive vision loss. There are members who have either low or no vision due to glaucoma, cataracts, diabetes related blindness, macular degeneration, and other causes. The data collection project began several years ago and for the past two years has focused on three specific groups. Dr. John Sutton, a retired psychologist, has been an active participant in each of the three peer support groups. Dr. Joan Fobbs, a college professor and director of a rehabilitation program was invited to join the project two years ago. This is an ongoing and inspiring project for which the end is not in view.

To describe a small group is hard. Trying to catch the engaging spirit for description is about like trying to hold a cup of water in the palm of your hand without a cup. Trying to study it freezes it and kills the flavor. Recording it brings out the ham. Filming brings to blossom the would-be actor. Analyzing sparks to life the egghead in us. How then to tell about our groups as we know them? Here is a try at it -- written by presenting quotations that are pretty close to what was actually said, spontaneously. Permission to quote was obtained after the fact. No intent to record was present beforehand. Much of the intimacy and spontaneity is retained. Most of the meaning certainly is. So -- here is a peep at our groups. All are quotes from one or another of us.

We are the first generation to live this long. We have to teach ourselves how to do it. What to do? What's important? Won't those decisions give me a nervous breakdown? The IRS tables say I have a fifteen year life expectancy. Nice that I won't have to pay taxes after that. I count my years backward now. I've been counting my sight down since I was a teenager. Now I'm mostly blind. Every three to five years I realized I've lost a significant amount, changing my level of functioning. I seem to realize it all at once, though, and I feel alarm and panic -- clumsy, sad. I suddenly reach out to socialize frantically, instinctively, feeling I need to survive. I desperately reach out to something new to accomplish. Learned online computing -- to bring brightness into the gloom.

I notice that my shame is less as an older person. Somehow I feel it's less shameful for an old man to be blind than a youngster. I wonder that the shock of this kind of blindness doesn't saddle me with a silent screen of sadness that keeps me from feeling real joy.

I know that my life expectancy increases each year that I live. Seventy-eight is far more wonderful than twenty-nine. I always planned for my later years.

Those talk show hosts sounded so knowledgeable that it came as a big surprise to me that they actually thought that the idea of sexuality in a seventy-year old was humorous.

With retirement, I found I was free to get myself back -- more time to myself -- more passion -- awareness of the passage of time.

I notice that wealthy elders were more able to, often, maintain their position.

Now is the time to do all the things I've wanted to. When I can let myself talk about it, I find that my new body image reminds me of that of persons who were blinder that I in the past. At first, I find it alarming -- then I remind myself how much I liked that person at the time. That seems to reassure me a little.

With this new freedom, what am I going to do now if I just let myself? Every day can be like Saturday.

Getting used to death notices is sobering. I find that going to Perkins is no guarantee of immortality. At fifty-one, I am more healthy and active than ever and have a joyous sex life. I do a lot of physical activity. This is definitely the best period of my life.

In my sixties, I still have a great deal of interest in sex and a great desire for it. But what makes it so poignant is that I am capable of giving now to a degree that I never achieved when I was younger.

At sixty, I am more vigorous and healthy than I was twenty years ago.

At seventy, I am experiencing a unity impossible to put into words that goes beyond space and time. I am enjoying a personal growth not possible in my earlier and busier years.

At sixty-five, I'm a lot more interesting than I was at twenty-five or thirty-five, but it's a lot harder to get anyone to pay attention.

When searching for a new partner, I often felt discouraged about my looking older, as well, maybe not a feeling, but once I was in a relationship the years I've lived became a plus. I felt proud of my experience and skill as a lover, something I did not have as a younger person. The more I do it, the better it gets -- in my late fifties.

At seventy-five, it's a constant process of growing sexually, helped on by friends and lovers.

At sixty, we are like two kids playing in a sandbox, sexual equals, a chance to play.

I can't see when I go to shows. At one place the dancer came and sat on my lap. I want to go to a gentleman's club. Generally they allow me to sit very close to the stage, about 18 inches.

I went to a retirement party and the belly dancer came over and placed her veil over my head and danced up to me.

I want to be included in the party.

For me, retirement was like a change in careers.

I grew up with shame and secrecy; not at seventy, I feel mostly sadness about my blindness. Now at seventy, I'm extremely proud of my accomplishments. I was always so alone and lonely, and so super-alert about how to fit in with the sighted world. All my life I had nightmares from the age of about twenty, about when I began to lose my vision significantly.

I have never discussed some of my feelings with family, I have a doctor for a son, several relatives who are medical. Can't share with them but I can share with the group.

I do not share many of my feelings with my wife because she is so close and I do not want her to panic, so I keep my misery to myself.

Whom do you call when you begin to experience vision loss. I raised seven children, have 16 grandchildren, use to climb trees, and use to be fiercely independent, suddenly overnight I have to depend on everybody else. My counselor was like a ray of sunshine, I couldn't read my watch until she gave me another one. Everything you said I relate to, that is what the group is for, the encouragement.

Forty years ago a peer told me that being blind doesn't mean you have to like it and I hate it but you make the best of it.

I have found that information shared by the group has helped. I have seen faces, stars, things that only the support group members would understand.

[When I meet people] I call everybody bud or hun, that way I can't go wrong [if I do not actually see them.]

I have gotten so, I take some things for granted [that people know I can't see]. I am afraid that I will offend people by not speaking to them, but I probably do not see them, for example, the Barber was offended and telling people that I was stuck up, but I had just moved to town and did not know him.

I have had nightmares all my life, and at age seventy, I practically never have a pleasant dream and still have nightmares. At seventy, my barber treats me with courtesy and respect that feels genuine -- much different that the envy and competitiveness and pain that I felt as a youngster, including that I couldn't make eyes at bars and at church socials and flirt like normal people do.

In the course of sixty days, my vision went and I thought okay, my life is over. There is nothing left for me. I'll give myself a couple of weeks to kick and scream and then get up and do something about it. I was a very angry lady. I made changes in my life when I finally made my adjustment to visual loss. I filed for divorce. I discovered there was life after blindness. Connecting with other blind persons -- I need a place to go once a month or so to be a blind person among other blind people. Organizations and activities saved my life. At age sixty-three, I still can't seem to conquer my anger and I'm angry with myself, though I'm ashamed to admit it.

I practically never dream, suppose that is a sign of depression?

I have macular degeneration and at times I have illusions. During these illusions I see red spots which turn into visual images.

[When I dream] I see cars as I last remember them, about forty years ago, and not in terms of how they might look today since I cannot see them. Also, I hardly see faces anymore.

Sometimes I see faces, crude looking, annoying and unnerving. Can blink it away momentarily.

I see things which appear to be perfect vision although I am totally blind. Dreams are from memory of vision - I see perfectly in dreams and trying to explain this.

I dream in perfect vision and awaken thinking that I am cured but realize that I cannot see.

I see black balls and sometimes they are as big as basketballs, wreathes are feathery and I see them in the ceiling. I close my eyes and try to go to sleep.

Having seen so much before blindness occurred is important. I am happy to have had a chance to see people's faces and to see so much, the trees, flowers, and the environment. I cannot imagine what it would be like to be blind and not have seen much of anything. It must be worse for people without a spouse.

I am concerned about matching my clothes, for example, what color are my trousers? I am having difficulty matching clothes.

If something is not where it should be the panic starts and I get sweaty.

A couple weeks ago I put my shorts on backward and panicked and thought that I had lost it all.

The day before the group meeting I was dressing and while putting on my shorts I put both legs in the same hole.

I don't think it's harder for me to age as a blind person than otherwise. When I first lost my vision, I was saying don't help me, I can do it all myself. Now I accept every bit of help within reason.

I don't know what I need, but I know what I want. I want the remaining years I have. I want to be more tolerant, more forgiving, more vigorous.

I treasure the remaining vision I still have.

I have a sadness because I can't do things my cousins do and feel good about doing things I have done, but that does not keep me from feeling sad about not being able to do certain things.

It seems to come over me all at once, about every three to five years, that I've lost really significant amounts of vision, like when I couldn't play ping pong anymore. Then I feel clumsy, sad, and hopeless, secretive and ashamed.

I see images of my friends who were that blind when I was not so blind, and I say oh, I'm that blind now -- sadly, painfully, and with some kind of reverence -- and I say to myself, oh, I've always liked that person with his blindness.

I cheated my way into the service. Saw enough to see in one eye, memorized enough to say what would be seen in the right eye when reading the eye chart. Went overseas before it was found out that I was blind.

I feel bad that my brother did not want to go, but was drafted, I wanted to go, but no duties for blind people.

The thing I miss most about losing my central vision is that I can't see the emotions and expressions on people's faces, such as the love of my children. I feel cut off in that sense. It's been so long now that I forget that people are telling me things with their face. I'm so frantically searching for it in their voices.

At fifty, within one week, I was rendered without central vision. I've always been a motivational type of person. It's nothing that should slow you down. There are unlimited possibilities. I'm starting to grow up and it feels good. I don't recognize people as well as I used to.

I became blind four years ago. I have streamlined my life so there is no stress, i.e., bill paying by credit cards. My friends and family have gotten me out and about. My religious philosophy: I do not look on my vision loss as negative but positive. There is life after fifty and there is life after blindness.

I see myself in you so much I felt so useless, I had to do something, so I volunteered. It really made me feel needed again. I became blind overnight with asthmatic anoxia. The orientation center made the difference. I'm so busy now. I'm a much happier person with so much courage to move on with my life. It wasn't until I met a blind person that I began to see a life.

As I've gotten older, I'm nowhere near as tolerant as I used to be, dealing with this stuff, eyestrain. If I fall now, I pay a hell of a price for it for three days. I've been the leader. Now I can't find things the way I used to. It puts a lot of pressure on me, now, doing for others. I didn't count on problems with my sight as I got older -- more problems, that is.

I've got hearing problems now, too. I get ornery with people. I need to be more up front with people about my problems. It seems very hard for me.

I was born with visual impairment. Within the past nine months, my remaining vision has been going very quickly. I've known for a long time that I was going to lose what I had. It's pretty hard when you've been used to doing for other people and you can't anymore.

I do at this point what I want to do; that's the big change in me as a female, at this age. It took me a year to adjust to the loss of that tiny little last bit of vision. Lot of depression. Lot of anger. I expected myself to be able to do things in the same way -- a lot of hardship on myself. I need new skills at this point -- in time, to go back to work. Mine were out of date by then, so I went to computer school. Been teaching WordPerfect for four years. Remarried. As I get older, I want to learn more. I'm more easily able to deal with things now.

I have a very supportive family, plus Perkins School for the Blind -- low vision -- sight got worse over the years. Hard to bear the thought of loss of more vision with age. Bearing up okay.

Tony and Ed say that people come in three categories -- naturals, educables, and creeps. Then there are those who are pretty much okay, but forgetful. They want to know about our categories of people.

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