THOUGHT PROVOKER 56
Older and Blind
Last Updated July 14, 2002
To Provoke Thought Is The First Step To Beyond
"I never thought I would have to face my retirement years with bad sight." The white haired man said. "When I was a young man, working two jobs to make a good life for me and my family, I didn't spend much time thinking of getting old, retiring. But as the years passed, as I got to be one of the older guys on my crew and my family grew and went out on their own, then you bet I did start looking ahead. By that point I was old enough to recognize I was not immortal, that one day I'd have to slow down and I even began thinking that I had earned the right to someday call it quits to work and take a vacation for the rest of my life; that's how I came to look at retirement. My wife has always been a hard worker too and together we saved and planned, looking forward to that time when we could kick back and enjoy doing things our own way without any time clock. I mean, we had dreams of doing some things we hadn't had time to do much of when we were bringing up our kids. Oh, like traveling, fishing, reading, taking painting lessons, visiting steam engine shows, maybe put in a butterfly garden around the bird feeder. and when we felt like it, just do nothing. Now all I've got is too much of 'nothing.' I feel like everyone I know is rushing around and I'm left behind. Another thing, my wife is the best, but she has to feel frustrated--this is her retirement too."
His chin went up and his eyes began to tear. "I've always taken care of myself and mine. Didn’t ever take on anything I couldn't handle, seldom had a reason to ask for help. Now I'm having problems with everything! Every time I want to do some little thing by myself, there's some part of it that stops me. It's crazy how it's complicating every phase of my life, even the simplest things like drive a car, read a mystery novel, eat at the table, put a screwdriver into a slot in a screw, mow the lawn, clear the leaves out of the gutters, things I just DID in the past""
"Then there is my family." He gave a great sigh, "They don't seem to understand what I can do, either. And, my friends are leery of me ... half of them help me too much so I avoid them and looks like the other half are avoiding me. So I'm asking you--you've seen other people my age, like this? How do they make it? What do I do now? Isn't this the worst time of life to go blind?"
e-mail responses to email@example.com
**1. “This one describes my becoming disabled to a T! I worked hard had a wonderful able-bodied working life at 45 That part of my life was over I was lucky to have been able to have "seen". Now retired on OAP I'm mobility impaired and legally blind. I had a good life to look back on I went through the "why mes" but so what Why not me? It's just another fork in the road. Except it and get on with what you can do You'll be surprised at how good life can be when you just stop feeling sorry for yourself and get on with living! Set your own perimeters of what those around you can do take control of your life. Smile and enjoy what you have.”
Diane Dobson (Victoria, BC, Canada)
**2. “this comments by the gentleman about losing his eyesight caught my attention. I lost my eyesight at age 54. since those traumatizing days of coping with blindness I have progressed significantly. my experience has revealed to me that time does offer an opportunity to learn a new way of living. I live alone and take
my basic living skills. I attended living skill training sponsored by the state of Virginia. skills are not enough. one needs the determination and will to take challenge of being blind. blindness is to me is a parallel world to the sighted. one's attitude must be positive! these are words from my world just to say that I had some plans for activities retirement. I try daily to create a new world for myself. my friends support me.”
Joel Cosby (Alexandria, Virginia USA)
**3. “A couple months ago, I probably wouldn't have been able to identify as much with the gentleman in this provoker, as much. But, since March, my husband and I have been helping our neighbor, who suddenly lost most of his sight. He's adjusting extremely well, but says that a big part of it is because he knows us. He has seen, over the years, that a good attitude and getting out there and doing what you want to can be done. So, almost immediately after
losing his sight, he asked about learning Braille. He expressed an interest in getting a cane, and I'm teaching him to use it. He's learned to dial the phone, cut food, do a little cooking; all these things on his own. So, with the help of his wife, and us, he's adjusting very well.
But, there are also the problems of friends and relatives to overcome.
That's a little harder. Bills friends and family have known him all his
life. He's attended the same church for at least 30 years, and now, in the last two months, people have been treating him differently. This is hard for him, and only time and education from him, will help to change that. But, people feel uncomfortable around him. They don't know what to do or how to help. So, this is another thing he has to learn and may not come as easily as some other things he's picked up. But, with a good attitude, as
my neighbor, Bill, has, it can be done.
All the things outlined in the provoker can still be done by this gentleman. His appreciation of them will be different, but he doesn't have to give them up. Yes, it's hard as an older person, but, no matter how old you are when you lose your sight, it can either be made to be an insurmountable obstacle,
and days will be filled with nothing. Or, it can be accepted and overcome. It's all attitude.”
Cindy Handel (Willow Street, PA
FROM ME: “How much of what the gentleman from next door learned from modeling? Remember that old saying, ‘Seeing is believing?’”
**4. “I was not diagnosed with RP until I was 60. However I had been diagnosed with stationary night blindness 10 years earlier and told it would not progress. I was teaching full time at the time and continued to do so until I retired at age 57 in 1992. I guess I had never thought much about what I wanted to do after retirement since my husband still had several more years to work. After I retired my vision began to decline. I was sent to another
Dr. He would watch me carefully for a year before sending me to yet another specialist who diagnosed me with RP. I also had to have major surgery and not long after all this my husband was diagnosed with Diabetes. He also started having some other health problems which ultimately caused him to retire on disability. I began to wonder why this was happening to me and still do to this day. At that time I was barely into my 60s and he was in his mid 50s.
Later years in life bring many health problems which are difficult
enough to deal with without having to deal with losing vision. However I am a great believer that things happen for a reason. I really struggle now at age 67 with many health concerns(some quite serious) and my husband's health issues, plus his inability to be able to fully understand that because I get out of bed every day and try to do the same things I have always done, I am not the woman he can expect to take dancing on a Saturday night anymore or to the movies. Going out to dinner is a real challenge and I am sure not much fun for either of us anymore but we do not have a choice. Life goes on
and we either go on with it or we don't.
I really do believe losing ones vision in later years is the worst
time to lose it since it is too easy to give up and give in at a time when
we have to keep on top of all the changes that are taking place in our
bodies. We are also at a time in our lives when we may be called on to care for aging parents and at a time when we should be able to enjoy grandchildren(if we have them),travel or just do what we want. We hear a great deal about how stress weakens the immune system and I personally believe stress is the worst enemy of those losing their vision.
One good thing which has come out of this for me is that my husband HAS to help. If he didn't there would be no way we could keep our home. I used to do all the outside work as well as taking care of the inside, the children ,and doing all the rest. My vision loss has forced him to do dishes, all the outside work and some shopping and many other chores which he never did before. I think in many ways it has brought us closer together. It is much more fun to work as a team than to do the job alone.”
Rose Jennings (USA)
**5. “About 80% of the people I work with are like this man. Mostly people in their 70's to 90's. They have lost there vision from AMD or glaucoma. They can't drive or read and their is very little government funding for their rehabilitation. Most sit around waiting to die. I feel sad for them. I think it is the worst time to loose ones vision.”
Charlie Web (Blindfam, )
FROM ME: “This gentleman says a lot of the older people he works with are like the one in the PROVOKER story, but do they stay there? Will the character in the PROVOKER story progress, adjust, is this possible? How?
As for government funding for the older blind, that must vary from state to state. In Nebraska we spend the time and the dime to assist an older person; for home maker or employment. How about in other states?”
**6. “Yes, I agree. That's the worst time to lose one's vision. People don't have the energy they once did to find out new ways to do things. They feel less able. I worked in our Partial Vision Center at Scripps Memorial Hospital for three years. Some people would come in with their families with no motivation
at all. Some had lots of motivation. Some would just love everything we had for them and they could hardly wait to use the closed circuit TV's, ETC. With others, nothing worked and they'd go away so discouraged. If there is any hope for returning sight, people are less motivated to use appliances because
they think their sight will improve. Dad uses those wrap-around sunglasses and he needs them even though his sight is lots better now. It's really a tremendous adjustment for an older person to lose his sight. I wonder what's harder, losing your hearing and getting used to a hearing aid or losing your
sight and having to adapt to all those new skills. I feel I've been one of the lucky ones because I've never had sight and therefore don't miss it. I think I'd rather be blind and have my hearing than be deaf. Of course I don't know what it is to have sight, but I think deafness must be harder because of the lack of communication. What do you think? He didn't seem to want to use the skills I was trying to teach him when his sight was pretty bad.”
Leslie Miller (Blindfam)
FROM ME: “Question- In terms of assisting someone to adjust to vision loss, if visual aids like magnifiers, CCTV (Close Circuit television) won’t help, do you stop there? what must be tried next? Or not, necessarily next if the one fails, but what must also go along with visual aids?”
**7. “Older and Blind? That's me but it doesn’t mean to me what I
thought it was when I was much younger. There are good
lessons I learned along the path of life and I'm still in
the "old ball game"!!!”
Dorothy Stiefel (RPlist)
**8. “I know exactly how you feel but mine is in reverse. I worked very hard to support one child alone then married. For 15 years, I worked a full-time job, a part-time job, and went to college while still finding time to be on the PTA board as well as taking my oldest daughter to dance lessons twice a week. When my vision got so bad I had to give up driving, a lot of that went away. My second husband works in another county so he couldn't be home in time to keep up the dance lessons. Now we do parent-teacher
meetings via instant messenger, phone conference, or by fax. I also have another child which was a surprise rather than planned. No regrets there though. We love her completely and are both glad she is a part of our lives. I only wish I could give her what I gave my oldest daughter for those few brief years. Now we are stuck learning what we can over the internet, raising butterflies from caterpillars in a box in the house, and letting her daddy and older sister teach her to ride a bike.
It's hard. Lord knows it is hard. I feel that I should be spending every
waking moment at work or at the school house being a parent but I am limited by my own body. I even had to give up the part-time job I was able to retrain for because of nerve damage and arthritis.
Just like you, I feel many days that it is unfair to my husband. He
shouldn't have to work so hard to keep the family finances caught up. We should have more time together as a family. But, somehow we manage. As for those friends, I hope you find that there are at least a few that you can count on to just be there. I have three wonderful ones that no matter how upset and moody and depressed I get they listen. I sent one of them a card many years ago that said, "A friend is one that turns to you when the rest of the world turns away." Several years ago, not long after I was diagnosed, she sent me the same card. All I could do was cry. It meant
the world to me.
I wish you the best. All each of us can do is struggle through. I have to keep reminding myself that things could be worse. I have a disease that will only take my vision. There are far too many people out there with disease that will take their lives.
Have a wonderful day.”
Samantha Thomas (RPlist)
**9. “I am 56 years old and have been diagnosed with RP within the last six months. I don't feel "old" but I'm certainly not as young as I used to be. My first reaction was to find all the information I could and hopefully discover that there is a cure or treatment. I finally came to grips with the fact that there is neither.
I bragged to my friends that I was going to get a guide dog named Killer or Fang and keep on doing all the things I had always done -- working, gardening, cooking, reading, canoeing, camping, biking, walking, swimming and joking.
After six months of living with diminishing visual fields, I feel as if my
world is shrinking along with my vision. I feel the constant frustration of not
being able to do the things I love without a great deal of difficulty. I've heard that people with RP learn to adjust. But my vision seems to be shrinking so quickly there is little time for adjustment. Just frustration as I knock things over, trip up stairs, and generally make a mess. Worst of all I seem to be losing my sense of humor.
Intellectually, I know I should be grateful that I have had great vision for 55 years and have been able to do all the things I ever wanted to do. As I whine, I realize that I am better off than someone who has lost their vision at an early age and has no memories of colors and plants and mountains and loved ones' faces.
My husband and I have been planning our retirement home for 3 years now. My friends are telling me not to move to a new town but stay where they are. This just further depresses me. They imply that I can't make new friends because
I am blind. I feel so cheated. My boss asked me a few days ago how long I thought I could keep this up. I am still doing my job just as I always did so such a comment is demoralizing. She didn't mean to be hurtful. She suggested that I might want to start playing the piano. I've never played the piano so that would really be a trick.
My friends and family tell me how brave I am. I don't feel brave. I feel scared and lonely even when lots of people are around.
Whine, whine, whine. I think I'll go get some cheese to go with it (LOL)”
Diann Hall (RPlist)
FROM ME: “So, in respect to adjusting, what kinds of measures could a person take who is losing their vision fast?”
**10. “Hi Diann,
I also was diagnosed later in life. My Dr. started noticing something
was wrong when I was 50. I was a school teacher and had only noticed subtle changes in my vision which I thought was normal. I was sent to a specialist who did all the necessary tests and was diagnosed with stationary night-blindness. I was sent back in another four years and received the same diagnosis. However my Ophthalmologist was not buying that diagnosis so he sent me to someone else who took over my care and watched me carefully for a year. He finally sent me to a specialist in a teaching hospital and there I was diagnosed with RP at age 60.
My biggest fear my entire life has been going blind. Even as a small child I obsessed about it, I suppose because we had a woman in our community who went blind from a brain tumor and my mother used to have her over for lunch. Watching her try to get food to her mouth was so very scary and in those days they did not offer the help which we can get today.
For the past six years my vision has really gone down hill. I think
the biggest problem I have with it is just the loss of visual stimulation. I have had all the training I am entitled to and am learning how to do things in a different way. I am not adjusting very well to not being able to tell who is speaking to me in a group of people and feel that the most difficult part of this whole ordeal is the stress vision loss causes. Since being diagnosed I have fallen and suffered a broken ankle, spent an entire year dealing with surgery, chemo and radiation for breast cancer, had some bouts of no balance at all, had cataract surgery, am now dealing with stasis dermatitis which is caused by pooling of the blood in the lower legs. I also
am having recent problems with heart arrhythmia and sometimes feel like I am self destructing.
I strongly feel that most of the health problems I am dealing with are the result of the stress caused by the loss of vision. For whatever reason people who do not understand vision loss seem to think that because I do not look blind I can carry on and do all the things I have always done. My husband's expectations of me sometimes make me so angry I could scream. There does not seem to be a way to make people understand that losing vision forces one to slow down and what one could do in 15 minutes may take some of
us an hour. I do not like depending on others and have a tendency to push myself to prove to myself I can do whatever the task is. My biggest point here is that I feel being older and going blind is so stressful it brings on many health problems which otherwise might not have occurred.”
Rose Jennings (67) (RPlist)
**11. “I have always been blind because of ROP and I think it would be way harder to go blind if you were older. Actually, my grandma lost much of her vision later and it was very difficult for her. The only thing I can equate it to, and this could be controversial, but I think it
would be like me suddenly seeing. I would be traumatized because I
would have become used to living as a blind person. I think it takes
people who are older longer to adjust to blindness or any disability
for that matter.
Anyway, just my two cents worth. Relating it to education, its more
challenging for older adults to learn Braille than what it is for
younger children. Good thought provoker.”
Michelle (NFB Educators List)
**12. “First, I don't think there is any "good" time to go blind. Parents of congenitally blind kids say "If they just could have seen." Others of any age say "It's such an adjustment, and it takes so much adapting and learning, and patience!" And there is the age-old process of adjusting to a disability that is, unfortunately, way too much like dealing with a death. but, there is hope. most of the tasks are clearly doable as a blind person -- I do most of them. As I have grown older -- nearing 50 -- I have chosen to let someone else do some of them. Cleaning gutters? I did that for the last time last year. Let someone who likes to do it get paid a small amount of rit. Or, the neighbor, or .... Driving and the independence it represents is the biggest life-long oddity for blind people, I have found. It isn't
that you can't get a ride -- taxi, bus, friend, wife -- it's that you can't go exactly when you want, on the route you want, and without some sort of compromise or cost. As for the issue of educating the friends and making them comfortable, as you learn, brag about the accomplishment then, you get reinforced by their praise,
and they grasp what you can do.
the last thing I want to say is that the key to adjusting or adapting is the way in which we react to the task presenting the challenge or pain in the rear. How can I ... is way more fun than I can't the way I used to. I find myself using my mouth for way more things than most sighted people would accept --
tracking the end of the fishing line through the eye of the hook or in the knot tying process, figuring out whether the head of the screw is an Alan, Phillips or straight edge, etc. I haven't died of poisoning or serious illness yet from what some would call contaminated objects. our best resource for answering the question "how do I" are other competent blind people doing what you want to do -- wood working, tying flies, .... The first one you ask may not know.
Keep looking. Some one knows.”
Davey Hulse (Salem, Oregon USA firstname.lastname@example.org)
**13. “This is not a rare case today. Many older individuals do lose a great deal of their sight and sometimes become blind as a result of macular degeneration, glaucoma, or diabetic retinopathy. As baby boomers become senior citizens, the number of those needing help to adapt to vision loss will multiply. This
is a fact of life and there is nothing to be done medically, at least not for the time being.
There are measures, though, that can be taken by society to deal with this age related situation. State and private agencies are already providing services for the rehabilitation of senior citizens experiencing vision loss.
As a rehabilitation Specialist, I would suggest to the individual in question to apply for rehabilitation services in his state. Through such services, he will learn alternative techniques to accomplish tasks he was comfortable doing in the past when he had normal vision. The only thing that he will not be able to do himself now is driving. If willing, he will learn, however, to take the bus or, call a cab, or use volunteer/paid drivers for transportation
needs. He can learn orientation and mobility skills to travel independently, learn to make use of talking book services, become literate again through Braille, Use Newsline to keep up to date with current affairs, use low vision aids to accomplish tasks requiring vision - assuming he has residual vision-
and the list can go on.
The trick is to learn new ways to do things without sight and to have a positive philosophy on blindness. Such a philosophy can be acquired by meeting successful blind persons or joining an organization of the blind with a positive outlook of blindness.”
Nevzat Adil Rehabilitation Specialist (Wausau, Wisconsin USA)
**14. “My life is a little different. I had vision in one eye all my life, and lazy eye in the other eye. I lost sight in my good eye about four years ago, and even though I can't drive, or read, I can do just about anything else. I am 58 now and will add another year before the end of this one. I am involved with several groups. I belong to ACB, The Insight Low Vision Support group, the Blind Computers group, I am very active in Church. I am not bragging, I feel like I need to be doing something. I am constantly on the phone, and the computer. I really do enjoy my life, yes, I would love to see again, but, as I tell everyone.....between God and Prozac, I'm
doing just great.
Joe Otts (ACB-L)
**15. “Sounds like the older blind man needs a referral to his state commission for the blind and let them get him some rehab training so he can once again use a screwdriver to turn a screw, eat with dignity and get around the neighborhood independently and safely, even if mostly he just hikes down to the bus stop on the corner or to the mailbox on the other corner or to the donut shop.”
Brian Linger (USA)
**16. “This is another of the interesting situations for us to comment on. I can understand where the older person is coming from and have spoken with many people who are losing their vision when older. In some ways, he has a point, "...worst time of life to go blind". However, this can be said by any person of any age. There isn't a good time to lose
one's vision. I spend much time on the phone and with consumer groups, speaking with blind or visually impaired customers/patrons, many of whom are older, and a common complaint is that they can't do things. The three points that I think of while reading this are:
1. People who lose there vision or acquire another disability later in life, have had a life of learning negative attitudes about disability and getting use to independence based on no disability. In other words, many have acquired a certain mindset and are unwilling to change easily.
2. Regardless of age at onset, there are negative and not-so negative conditions that may effect adjustment. Being blind from birth or losing vision early in life is a problem of learning and socialization, given that most of what is normally learned is based on what is seen and is dramatically effected by family members and others. However, children tend to be more flexible and willing to learn. Also, if given appropriate support and freedom from prejudice,
children will cope with almost any situation.
On the other hand, people who become disabled when much older, have had years to learn that disability is bad, a loss of life as it is known. "Blind people can't do anything." Again, the reactions of acquaintances and family members can help or cause more problems. However, the mindset of the individual
is more difficult to alter. A second problem is that many people may not be willing to learn new and adaptive skills.
3. In many parts of the country, adjustment services for people who lose vision later in life, are not available or are inadequate. Few rehabilitation programs work with people who lose vision after retirement or, in many cases, just prior to that age. Lucky are those people who live in an area that
is served by an agency that does.”
Doug Hall (Daytona Beach, FL USA
**17. “Look old timer, Life, no one ever said was fair. You can stand there feeling sorry for yourself as you probably feel you have a right to do, or start to use your god given abilities. Blindness or bad sight is no fun at any age, but you are fortunate, you had a life time to gain experience, where others has not. So if you are in good health outside of your eye sight, get off that dam rocking chair and do what you know you can do and ask for help for the things you know dam well you can't.
A old timer of 65”
R. J. Fugagli (Franklin, Pennsylvania USA)
**18. “I would like to respond to this thought provoker. There is a lot I could tell this older man who is losing his vision. I could tell him that older people who are losing their vision can still do a lot of things with a few alternative techniques. He says that he wouldn't be able to read anymore, and there are plenty of books on tape from the public library and his state library for the blind, and he could lean some basic cane travel, and he could learn to use public transportation to get around. He could also maybe get some instruction from his state agency for the blind on basic techniques and then he wouldn't
feel so out of touch. Also, he could get in contact with the National Federation of the Blind and learn from those who are in the Federation who are older and losing their vision. I feel that if he meets some people of his age who have already lost their vision, he would not feel so alone.”
John TeBockhorst (Davenport, Iowa USA
**19. “I think I need to limit my discussion to the last question: "Isn't this the worst time of life to go blind?" Having said that, I can only state an opinion since I've always been blind.
It seems to me that there's no ideal time in life to go suddenly blind, except possibly if you're rather young--say anywhere from infancy to mid-teens. Having said this, it seems that the younger you are, there is less likelihood you'll suffer from the shock, confusion and helplessness you might experience when you've gone blind as an adult. If you've been blind since birth, you become literally wired to live the life of a blind person. You have the skills (or ideally you have the skills) that it would take to live as a fully functioning blind person. Ideally you know Braille, can travel independently, use
your hearing and sense of touch to compensate for not having been able to see. There are things you won't be able to do, like drive, fly a plane or look through an electron microscope, but frankly I myself don't much care to do any of those things. On the other hand, if you lose your sight relatively late in life, you've been wired as a sighted person for so long that it's going to be difficult
for you to adjust. And with the negative stereotypes most sighted people have about blindness, well, you have added bullshit onto the stuff you already have to deal with. I don't think adjusting to blindness as an elderly adult is impossible, but I do think it's harder. At the same time, I think the blinded adult can mitigate the difficulty if he/she has known other functioning blind people who don't give a second thought to living without sight.
I think it's up to those of us who are in the rehab field to treat the situation with compassion (and without pity or scorn or lowered expectations), so that the newly blinded person can know that he/she can have a rich and fulfilling life without sight. Of course this thought PROVOKER brings to mind some of the THOUGHT PROVOKERS provokers, particularly those which focused on a "cure" for blindness. Right now I'm sitting in my office early in the morning of Memorial Day, staring up at the ceiling as I'm typing. I wonder how difficult it would be for me to adjust to sight if it were suddenly thrust upon
me? I don't have the skills of a sighted person, so I wonder if sighted people would expect me to just automatically adjust to sight and become frustrated when I did not adjust so easily? Also, is the opposite true--do some blind people, or may some of us, treat the newly blinded as outcasts, being afraid that associating with them might detract from ourselves somehow? Just a few random thoughts that may or may not have anything to do with anything. Cheers!”
John D. Coveleski, New York, New York email@example.com )
**20. “I started life as a print reader. My great grandfather taught me to read when I was three. When I was six and should be starting school, I was no longer able to see print clearly. Two years of surgery failed to help and I finally started first grade at age eight as a totally blind child. I think that
since the world is so much of a mystery to a child, they are more flexible in adjustment. They don't have years of engrained ideas about what a blind person can or can not do. I learned to read Braille quickly and easily because to me, it was just another way to reenter the world of the written word that I had so enjoyed at my great grandfather's knee. I didn't know that blind children weren't supposed to run, skip rope, climb trees or stand up to
pump a swing, so I did those things too. The older people I know that make a good adjustment to blindness are those who refuse to allow others to define what blindness means and challenge stereotypes. They approach it as something to be met head on and explored like any other life change. Instead of always
looking back to what they have lost, they look forward with an attitude of how can I do this thing I want to do? They explore new techniques and get a sense of accomplishment at each gain in a new skill or technique. Yes, they get frustrated, feel sad, angry or grieve, but they don't allow themselves to wallow in those feelings and use that frustration as energy to look for answers or even create them themselves. I remember a seminar put on by the
ACB called Vision Loss and Aging ain't for sissies and it isn't. It means challenging those things that frighten and frustrate you. Some times the fear is actually a greater handicap than the vision loss. The fear of getting hurt, the fear of looking foolish, the fear of being treated as an object of pity all keep people from getting out there and learning the skills that can lead to a richer more fulfilling lifestyle.”
DeAnna (Quietwater) Noriega (Colorado USA firstname.lastname@example.org )
**21. “People like this gentleman makes up most of my caseload. I guess one of the first things I do is concentrate on what the person can do. I hook the reader up with library services for the blind and discuss eating problems with him. As a professional I like to have the family member, the wife in this case with me and the client to do some adjustment counseling. I feel it is important the couples know it is all right and normal to grieve. I also try to
hook the family up with other families experiencing the same problems.”
Angela Farmer (Dothan, Alabama USA(
**22. “Oh, this is just about every sighted middle-aged person's worse nightmare! Once you hit that magical age where what once was perky is now droopy, what once was sexy is now sloppy and what once was clear and now requires glasses or bifocals, we realize that we are immortal and start trying to reverse things. We start to exercise, watch our cholesterol intake, cut back on
drinking, try to quit smoking, and it's almost like watching a puppy sliding across a smooth floor trying to put the brakes on before hitting the wall. We make jokes about it: "My teeth and I no longer sleep together", or "My back goes out more than I do", and everyone laughs. Then we start hearing about age-related visual impairments, and find that there's not much to be done to prevent them. Cataracts used to be a major cause of adult blindness, and now the process of removing them is relatively minor. You're in, you're out, would you like fries with that? How about better vision than you had
prior to the cataract surgery? It's almost miraculous, so we hope that other defects like glaucoma or macular degeneration will also be repairable in our time. Going blind is just not an option, it is not in the plan titled "how I want to spend my golden years". It's a visual world, and that's how we like it. We spend our lives, we hope, getting better and wiser and more in control of ourselves, and losing one's eyes would be losing a certain amount of the independence that we've had for eons, like being able to drive, and
even though there are other ways of getting around, we don't want to make that change or give up the privilege and pleasure of driving through a hilly countryside and being in control of the journey. We hope to be able to walk from one place to another independently, without any assistance, like a walker or a wheelchair and especially not with a guide to lead us or a cane to probe with. We finally have the time to sit and enjoy a good book, and expect to be able to read it, although, personally, I think it would be
relaxing to listen to audio books, but I don't know from experience. It all boils down to having to be dependent in any small way, and even the most competent blind person will admit that there comes a time when asking for assistance is necessary, so I'm not knocking it but just stating it. The thing is, though, everyone needs a helping hand at some point, especially as age sets in and body parts start to go, so I think once someone gets over the initial panic of whatever it is that is happening to them, they can at least realize that there's nothing wrong with learning alternative ways of doing
things and can then get back a whole lot of the independence that seemed to have been lost. This would be true, I would think, of just about every aspect of aging, because some people have internal organ limitations, or dietary limitations, or mobility limitations, mental and emotional limitations, visual limitations, they lose their hair, they lose their teeth, they lose their hearing, some even lose their senses of humor. Let's face it, aging sucks, and even those who treated their bodies like temples in youth are looking like archaeological digs in elder years. Even Dick Clark
has to be held up once in a while with invisible wires. It's the old case of finally getting your head together and the body falls apart, but it's better than the alternative, so even though the person in the story is despondent about losing his sight, he will find his way back to independence if he takes advantage of the services that are available these days to elderly people and
learns what he needs to know, just as he's done all his life. Sometimes, the more things seem to change, the more they actually are the same.”
K (Florida USA)
**23. “This is a very big, and important topic. The story suggests that blindness is a problem for sighted people who lose their sight as they age. Lots of people are in this situation, in fact the majority of people classified as blind probably got that way as adults, if not as senior citizens. They have their own unique challenges, and I don't mean to minimize them.
I, however, have had low vision for as long as I can remember. As a young adult, I don't ever remember being afraid of loneliness. There were always lots of people around me. Since it was the sixties, we had the social glue to make community a movement. As I got married and had a son, there were young families around. I met lots of people through my son, and we met at each other's houses for formal and informal play groups. As my son grew
older, the need to be with other families diminished, but by then I was
working full time.
In recent years, I've been retired, working part-time, and volunteering. My son has a girlfriend, and we get together occasionally. It IS harder to make new friends. People's lives are complicated, even though at my age, they are supposed to be simplified. I still meet people through my various activities, but it's much harder to get together outside of our common meeting places than it used to be. It's not a unique problem for blind people. Blindness just magnifies the issue.
I forgot to ask, when are you considered old? There are probably a few people on this list who'd consider me a young wipper-snapper, so I better not get too negative about being older than I used to be. It's also hard to keep body and soul together. A lot of my time is spent exercising for salvage, and going to doctors.
Another issue for me is, it's harder to stay focused. I don't have a child to raise, one job to go to, career goals. I raised my kid, I own my home free and clear, I have an IRA, I have reasonably good health, so what next?
I am involved in several disability rights activities, as I'm sure lots of
you are. I don't know if this is a temporary, necessary life-style until we achieve social justice...something like Erma Brombach's interim Moms, or is it my career? Maybe someday I'll blend into the rest of the world, and take senior citizen yoga classes. The thing is, I'm getting hooked on disability rights activism. I should be allowed to be self-absorbed, but It's a struggle to give myself permission to read a novel.”
Abby Vincent (Culver City, California USA email@example.com )
**24. “As I am in this same age group, I will make the following comments.
I would suggest to our friend that he stop feeling sorry for himself, and get off his tail and do something. Stop looking at the things you can't do and look at what you can. For example, vacuum the house, do the washing, peg out the clothes, wash the car, join a service club, do some volunteer work in the
communities etc. Why not do all of the above. You could grow some veggies or fruit trees in the back yard. Have as full a life as you can. Don't just sit there expecting someone else to wait on you hand and foot. None of us is completely sure, but this may be the only life we have and you are a long time dead. Don't just sit there expecting the next visitor to be the undertaker to measure you for that wooden overcoat. Get up and get going and you will be amazed just where the great and grateful people will come from. Strive for a happy and fulfilled life and enjoy all of it.
Have a happy day,”
Alan McClintock (Cairns Queensland Australia)
**25. “I recently met with a gentleman whose situation was not unlike the gentleman in the short story below. Mr.. brown (the name has been changed) had owned his own Architectural
Firm for 40 years before losing his vision to Diabetic Retinopathy. when Mr.. brown first came to the job readiness group he was convinced that his days of productive participation in both work and recreational activities were over. the day-to-day details of his life were not too different from the man
in the thought provoker.
As we explored his past work history, I noted how well versed he was in his profession. Conversationally he spoke with confidence and pride as he recounted his past accomplishments; however; the tone turned to one of hopelessness when he spoke of his future. "You need vision to be an Architect." He said.
We continued to talk about his assets and how he could apply such a depth of knowledge to his current situation. As we explored his tone perked back up when it was suggested that his knowledge might be better applied now in the classroom. Whether as a college level professor or as a private consultant
to others in his field, he could not allow years of experience to be lost in the past. Armed with a new vision, Mr.. brown changed his occupational goal from Architect to consultant. A couple of months later I spoke with him again and, though
he had not yet found a consulting job, he had contacted the Pastor of a local church that had burned down and he was confident that he would be involved in some capacity in the re-building project.
The moral of the story is: People who lose their vision in later years have no idea of their vocational and social potential. they have only known one way throughout their entire lives and require an ear to listen and innovative ideas for re-entry into an active life. Be creative and listen to people's dreams and passions. Chances are, they could follow those dreams even with their eyes closed!”
David Ondich (Dallas Texas USA)
**26. “Boy is this a subject that hits the mark for me. I have RP and have known since I was in my mid 30s that I would eventually lose my eyesight. But between around 40 to age 55 the changes were so gradual and for about a 5 year period from 50 to 55 there was almost no change at all. When I retired at age 56 I really thought I would have partial vision for another 10 years or so. what a nasty surprise when 2 1/2 years later I am totally blind except for some
light/dark perception. Right before retirement we bought a new motor home and planned to do some traveling. The first winter we spent in Arizona, we bought a lot at an RV resort. Don't get me wrong, I can still travel of course, but it is not quite what I expected to say the least. Do I feel sorry for myself? You bet I do and for my husband also who looked forward to our retirement. I know I have many things to be grateful for but that does not keep me from
feeling cheated out of something that I worked very hard to get and that was a comfortable retirement and time to do some fun things. I am trying to learn to do as much as I can without sight but there was still so much I wanted to see of this country. Now I must try to see it through someone else's eyes. and learning new things at my age is not as easy as when you are younger. The other side of the coin is that I had some vision for a lot of my life and I can still remember how things looked so I can use my imagination to fill in the blanks. I also love books and am fortunate that audio books are so easily obtained for my enjoyment. I also enjoy the technology that allows me to sit here and read and write email on my computer. There are many assistive products and technologies which were not available to us a few years ago. So my life is not what I would like it to be but it could be much worse. I am pretty healthy for my age and that is a bonus. so I will do my best to dwell the good thing and not on the bad. wish me luck!”
Marie (Vancouver Washington USA .
**27. “I am responding to what seemed like limiting assumptions some older blind people have made in this thought provoker.
One person wrote: One good thing which has come out of this for me is that my husband HAS to help. If he didn't there would be no way we could keep our home. I used
to do all the outside work as well as taking care of the inside, the
children ,and doing all the rest. My vision loss has forced him to do
dishes, all the outside work and some shopping and many other chores which he never did before. I think in many ways it has brought us closer together.
I think that being closer and working as a team is good, however, that could have been going on before the vision loss. The things that seem to have been decided as things the sighted husband "has" to do, are not necessarily so.
My former husband and I were both totally blind since birth; so were others I know. We had our own homes, raised our families etc.
I did the dishes, took care of stuff; he did the lawn (sometimes after dark when it was cooler and sometimes barefoot so he could feel his way) and worked on the roof, cleaning it off and such. He grilled outdoors, put our porch swing together, set up our daughter's swing set, occasionally fixed the plumbing and he didn't see. Often, I helped him. (Not the roof, sorry;
but not because of blindness.)
I did some of the plant stuff, dishes, we shared on cooking and housecleaning; I did much of our daughter's early care, though we both took part.
She had dance lessons, swimming lessons and gymnastic lessons--not as many as some of her friends, because we didn't happen to afford them, but we made sure she got there, by friends' families, cab, bus or whatever, depending on her age.
Some of her friends enjoyed taking bus rides, walking to the park, and other things their sighted parents hadn't done with them.
When my former husband and I worked as a team it was much better; it didn't always happen, but that was not at all related to blindness.
I don't think it is fair for the husband to be in the situation of "having"
to do those things because of vision loss; but to want to do them out of love and caring. The wife could relearn the things she did before so she could know she could still do them, and then they could still do teamwork.
Now we are stuck learning what we can over the internet, raising
butterflies from caterpillars in a box in the house, and letting her daddy and older sister teach her to ride a bike.
I don't feel "stuck" on the Internet; it has opened a whole new world for me. I can finally read more than I want to about a given subject, satisfy my curiosity; do shopping, though I still like to do regular shopping, too, and keep in touch with family and friends, though I can also do that via the phone, Braille, tape, sending pictures, or typing on my old clunker.
Oh yeah, I helped teach my daughter to ride her bike. Her dad, blind from birth, learned when he was very young and knew his way all around Lincoln, NE, and now, probably much of the world. Hard to get him lost. But I was the one who leaned the bike up against the fence, she got on and I held on until she was ready for me to let go; she went on the training wheels, and then wanted to let them up. She fell over a couple times and neighbors were gawking and gasping (I heard them and she saw them) and I told her not to
pay attention and just do her thing, or we could try later. I said, if you
can get to the next driveway you'll be able to learn to turn around and it will get better.
It was less than an hour before she was off, on hills and everything. We had a rule that she wait at the next corner until I caught up with her and if she disobeyed that one, no bike. She knew that I needed to know where she was so we would both know that she was okay. She seemed to understand this.
But I gave her as much freedom as she could handle. I did not want her thinking that, poor little girl; how awful, she can't do anything or go anywhere because her parents are blind. Blindness was our characteristic, not hers. Of course she was affected by the social implications of it; people talking to her instead of us and otherwise trying to reverse the roles of parent and child. But we explained that too, whenever we could.
No, we weren't perfect parents and no, we didn't do every single thing that every blind person has ever done; no one can do and be all of that. But we did all we could and did not assume we couldn't do anything because of blindness.
I know this may sound braggy to some; that is not my intention. I am
wanting to let those who may not know that we can and do do normal things. My former husband and I are not at all alone in this. Many have done lots more.
It doesn't matter how much one does as much as why one is or is not doing something. If we try something until we can do it, and then decide we don't want to, that's different from saying, well, I can't see, I can't do that anymore when we might not really know.
I know of a guy whose "loving protection" as he calls it, of his wife has
caused her to be almost bedridden and filled with shame for all that she believes she cannot do; and what would she do without her husband? Yes, what would she do?
I know of a blind woman who is still living at home with her mother and she's my age. What will she do when her mother is gone? Her mom must be nearing 80 by now.
Laurie Merryfield (Washington USA )
FROM ME: “Also in relation to the lady who thought having her husband doing more around the house, doing what she once did- Might the ‘have too” feeling part of it get old then what do you have? Might it develop into resentment and/or frustration due to more stress and/or pity for the one who can no longer do ‘X,’ etc. And no, it doesn’t have to go negative, but... So after the first accepted blush of this type of new arrangement, be it from love, do either of the couple want to stay with that new order and especially if they could learn that it is not necessary? Providing blindness is the only new factor causing this change.”
**28. “another one:
world is shrinking along with my vision. I feel the constant frustration of not being able to do the things I love without a great deal of difficulty. I've heard that people with RP learn to adjust. But my vision seems to be shrinking so quickly there is little time for adjustment. Just frustration as I knock things over, trip up stairs, and generally make a mess. Worst of all I seem to be losing my sense of humor.
It sounds like this person either needs a decent rehab counselor or the one they have isn't very helpful. Maybe they need another blind person around to laugh with. I was fortunate in that respect to grow up with my sister, who is also blind. So we had each other when the rest of the world might be anywhere from indifferent to cruel.
Blind people don't have to stumble, bumble, jumble, fumble or tumble. Using a long white cane helps a great deal. Yeah, I know, when I was twelve, I hid mine in the closet. But when I went to college, I was actually glad to have it.
....I realize that I am better off than someone who has lost their vision
at an early age and has no memories of colors and plants and mountains and ....
Most people who have never seen colors, or plants or mountains find other ways to perceive them. I know some who mope, but most do not; they don't know any other way. They don't see their loss if they never saw, to lose their vision. It's only a loss when someone saw some and then lost it. Kids usually find ways to cope if they're in an encouraging environment. Adults can, too, though it seems that some have a harder time when older.
The lack of energy and other disabilities, I can understand those getting in the way; but that's not blindness. Some people do less when they're older and blame it all on blindness when it might not be that at all. It is so hard for some people to separate out which disability means this or that. I have experienced that myself, especially with other people who are only blind.
I am not as mobile as I was but blindness has zero to do with it. I used to be everywhere
Pain, exhaustion, nausea, headache, all those things can impact in much different ways from blindness. Blindness isn't an illness or a symptom; it's just a characteristic. Blindness, itself, doesn't cause pain, exhaustion, illness, etc. Blindness itself doesn't cause stress; it's the adjustment to it and lack thereof that can bring on stress.
Just some of my thoughts which I hope will help. If they don't the delete key is easy for a totally blind person to find, hahaha!”
Laurie Merryfield (Washington USA )
**29. “There is no good time to go blind. If you do it when you are very young, you can grow into life without sight and it is the norm for you. You can lose vision in your middle years and it can screw up thins for a while, but you can adjust. You can go blind as an older adult and there too you can adjust. The key is at any age, get good positive counselors and teachers and blind friends. Another key is don’t get weak, remain strong, if not in body, then in your mind and heart.”
Abe L. (USA)
**30. “I am 81 and have macular degeneration. I have learned to live with it and the secret was to share the experience with all I knew! Family must take part in the process. Friends need help with their adjustment. I also needed to learn that I was not the lone stranger, there are entire groups of people out there that have been down this road before and have mastered its bumps and turns. Find a positive support group of the blind for the blind. Stay away from do-gooders and people with pity. Get good rehab. Stay positive!”
Maxine Matt (Colorado USA)
**31. “I would like to respond to our friend in Vancouver, Washington, who became virtually totally blind late in life.
Ma'am, you contend that you can use your imagination better because you had sight for most of your life. If that is so, it only follows logically that we who have been blind for all or most of our lives can use our imaginations very little, if indeed at all, since having sight is a prerogative to having a good imagination.
My intent is not at all to be crude. But every single one of us knows people whose eyes are figuratively glued to the television set or the movie screen; and these people have no need to use their imaginations, because the action is not described. So ma'am, I dare say that the muscles of your imagination have atrophied, while we who have been blind for most or all our lives are accustomed to using our imaginations, unless we're put to sleep first by
some of these crummy movies!
You also say earlier, "Do I feel sorry for myself? You bet I do ...." To my readers who are well-adjusted to blindness, let me say this: Let's not be hard on her. She indeed has cause to feel sorry for herself. I think that for the moment, instead of taking time to travel with her husband and whining about how she has to see the world through other people's eyes, she needs rehabilitation services. I believe Washington State has a commission for the blind. She could also use assistance from other blind people, by participating in the National Federation of the Blind of Washington and/or the Washington Council of the Blind.
Now, ma'am, if you would seek rehabilitation from an agency serving the blind, and if you would seek contact with other well-adjusted blind people, your life would be much more satisfying, and much more normal. Several of us on this Thought Provokers list would say the same. Would you please take our word for it? We know from firsthand experience.”
Jeff Frye (Overland Park, Kansas USA firstname.lastname@example.org(
**32. “I am 18 and I went blind at age 13 and I thought that was the toughest time of life to go blind. I was just starting to think about gaining independence, and reaching an age of physical maturity that would in part rule the next 60 or seventy years of my life. I think being able to handle blindness is best if you have so life experience to fall back on. I think the older person is usually more mature and wise and has life experiences handling stresses that they can fall back on to aid them in going blind. So no Mr. Older person, I don’t think going blind in the later years of life is the hardest! (Oh yes, for any age, a person needs to meet other successful blind people to learn from.)”
Ben Farley (USA)
**33. “I went blind at 20. it was a slow process, taking 11 months out of my twentieth year. I am not sure if I would say it would have been harder if I was younger or older. I do believe I was a mature 20 year old. I didn’t cry about it and though I didn’t like it, I worked with the doctors and then with the rehabilitation specialist. I didn't allow depression to rule my life. I was also lucky to have a counselor who was blind and active in the NFB; you need to meet others like what you are to be come. Especially if the “What you will become” is something that most people fear.)
I do think that going blind at an early stage in life can be hard on a person because they would have a hard time understanding the what and why” of it all.”
Yet I can see the point of the older gentleman in the PROVOKER story. He had made many plans that not would have to be either done differently or dropped all together. Also he may have started having other age related health problems and going blind seemed to be the straw that broke the camels back.”
Betty Adams (USA)
**34. “Thinking about the retired person of the story: The best advice I could give as one blinded person to another is remember what you have learned through your life. Most of us know that if someone needs our help or compassion, we give it so much more willingly if that person is upbeat and hopeful. It is very difficult to keep the equality of a friendship going if suddenly one of the parties has become "needy". That is when friends start to drop off and
you start to feel isolated and resentful. Yes, if you like, a tragedy has happened, so what, you could be dead, you could be starving, your loved ones could be lost. Yes, you have lost your sight, I mine, do we feel cheated, yes we do, but the only reason we can afford to feel "cheated" is because we have had to suffer so little. Looking forward to any sort of retirement is a luxury in which most people in the world cannot indulge. But here is the good side, you have all that you have built to lean upon. All the friendships you have made over decades to rely upon, so long as you don't abuse them, and all the maturity you need to see this adventure for what it is, an awakening of all your other senses. You could enjoy it, but probably not on your
own. You and your partner should go together, or they might become excluded, to self-help groups, where advice on helpful apparatus and techniques will get you going. Accessing literature and all of that kind of thing will make an immediate change to your sense of loss. Sharing your difficulties, not with well-meaning but inexperienced people, but with others who know, and learning from them could actually be exhilarating. Still make your butterfly
garden, but also, make a highly scented garden, which will also attract more and varied birds with their beautiful song. I have always promised myself to learn which bird sings which song, but I have not had the time, per haps now you have.
I don't mean to lecture anyone who feels like the man in that story, but tea and sympathy can be got anywhere, but you pay the price for them, too much sympathy is more debilitating than blindness itself. Good luck.”
Sandy Tomkins (USA)
**35. “I do not think it is the age a person goes blind as much as it is how he/she can cope with the loss and as to the help he/she gets.
One letter mentioned that Washington State had help for the blind, (Washington Council for the Blind). Well I had trouble with my vision all my life but still lived a full life, gaining a college education and working as a Registered Nurse in most aspects of hospital work. I was 46 when after another eye check up I heard the words, "you are not to drive your car any more. Do not use any garden equipment like your tiller or chain saw and, you are through working!" Needless to say, it hit me hard. Sure I had sort of expected it but I kept feeling this would never happen. We applied for SS and checked in for state help. The only thing that Washington State offered me was to train as a concession stand operator. This to me was the bottom of the list. Now I will say here that I know others who enjoy this work and I do not mean to put them down. It is just to me, I could
not do it! I did stop my nursing, I did stop driving the car but I did not stop using my garden tiller, chain saw , skill saw and others, well not for some years longer.
For years I felt I was the only blind one for I had no contact with other blind. Then around 6 years ago I got my computer and started chatting with blind all over the world. I soon learned that my feelings were shared by almost all blind people. I also learned there were many hurting people out there.
Thus I changed my outlook. I started finding ways to encourage and support those who needed this encouragement. I started a support group here in our area and also belong to our local chapter of our Washington State Council for the Blind, affiliated with A.C.B.
I keep busy doing almost everything I did before my eyesight dimmed. I still garden, can do any house work or cooking. I prune my own trees and shrubs. I build and repair fences and gates, even to nailing supports where needed. So, do I ever feel sorry for myself? Sure I do! But I do not dwell on it for long. The best thing to do when feeling sorry for oneself is to do something to help another person.
I am thankful for my years when I could see. I know what colors are and shapes are like cars, tractors and other. But am I better then those who have never seen at all? I do not think so. Most people who have never seen the light have had a much better mobility training and special training that we who lose our sight in later years ever get. I don't think we can say that it is better to lose our sight in older years or to be born blind. Each case
is different. But I do know that we can make our life exciting and worthwhile or we can make our life miserable and make the lives of those around us miserable at the same time. We can choose! I do miss seeing the lovely scenery that I pass through, miss seeing my wife and grown children but I can still hug them!
Life can still be wonderful and fun!”
Ernie Jones (Wala Wala, Washington USA)
**36. “The first thing that we can tell this gentleman is that there are resources around that can help him relearn to do some of the things he had done previously as a sighted person. The agencies for the blind teach things like mobility, activities of daily living, Braille, technology etc. The library has talking book machines where he can read books and keep up with current best-sellers. it would also be important for this gentleman to get involved with blindness groups if he feels this is appropriate. Besides seeing how other blind people work together to get the work of the group done, he can also get individual support from the group members. Blindness really isn't as bad as this person portrayed in the little vignette.”
Mary Jo Partyka
**37. "Boy is this a subject that hits the mark for me. I have RP and have known since I was in my mid 30s that I would eventually lose my eyesight. But between around 40 to age 55 the changes were so gradual and for about a 5 year period from 50 to 55 there was almost no change at all. When I retired at age 56 I really thought I would have partial vision for another 10 years or so. what a nasty surprise when 2 1/2 years later I am totally blind except for some
light/dark perception. Right before retirement we bought a new motor home and planned to do some traveling. The first winter we spent in Arizona, we bought a lot at an RV resort. Don't get me wrong, I can still travel of course, but it is not quite what I expected to say the least. Do I feel sorry for myself? You bet I do and for my husband also who looked forward to our retirement. I know I have many things to be grateful for but that does not keep me from feeling cheated out of something that I worked very hard to get and that was a comfortable retirement and time to do some fun things. I am trying to learn to do as much as I can without sight but there was still so much I wanted to see of this country. Now I must try to see it through someone else's eyes. and learning new things at my age is not as easy as when you are younger. The other side of the coin is that I had some vision for a lot of my life and I can still remember how things looked so I can use my imagination to fill in the blanks. I also love books and am fortunate that audio books are so easily
obtained for my enjoyment. I also enjoy the technology that allows me to sit here and read and write email on my computer. There are many assistive products and technologies which were not available to us a few years ago. So my life is not what I would like it to be but it could be much worse. I am pretty healthy for my age and that is a bonus. so I will do my best to dwell on the good thing and not on the bad. wish me luck!”
Marie (Vancouver Washington USA)
FROM ME: “If a person makes a good effort to adjust and even if they do well emotionally and skill wise, do you think that person can still at times feel cheated in life?”
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