No two people experience vision loss in the same way. Many feel sadness, grief, anger, and other powerful emotions. Vision loss inevitably results in lifestyle changes and has an impact upon the lives of family and friends. Each person dealing with vision loss is unique; each has a compelling story to tell. (See other My Story interviews [1])
Vivian is a quiet-spoken woman who has strong opinions and religious beliefs and a dignified determination. She describes herself as extremely stubborn! Vivian was diagnosed with diabetes twenty years ago, at age 58. Ten years later, she was diagnosed with diabetic retinopathy and spinal stenosis.
Vivian lives in Florida with her husband Frank. Married for 56 years, they have four children — two girls and two boys — and 10 grandchildren, ranging in age from 3 to 21.
"To be quite honest, when I was first diagnosed I don't really remember what I was told," Vivian said. "I think I was so shocked to realize I was falling prey to diabetes, a disease I thought I would never get. I was always a healthy person — never sick. I didn't know much about my family's health because I was adopted, but I did hear that my grandmother had diabetes, although at the time it didn't register with me.
"I've been overweight for most of my life, but I know what foods to stay away from. After I was diagnosed, I did stay away from the sugars and that was a good deal, but I didn't make a big fuss about it, I just stopped eating the bad stuff. Both my husband and I gave up ice cream, but now that I've learned how to manage my diabetes, we're back on it again — once in a while!"
"But I've learned when you have diabetes you don't have to take all the sugar out of your diet, you just have to learn how to manage what you eat and watch out for 'hidden' sugars and carbohydrates. Being the stubborn person that I am, I didn't ask for help — I just tried to educate myself about diabetes."
"But maybe the stubbornness of not going on insulin sooner might have worked against me — I don't know — but the doctor eventually convinced me that I would be better off on insulin. It weighed a lot on my mind because every day I thought I'm going to have to have a shot.' But finally I agreed to it. No, I wasn't scared about using a needle. Somehow you adjust to doing what you have to do.
"Today I take four shots a day: two of insulin and two of Byetta [2], which is supposed to help you process your food more slowly. I think going on insulin was the best thing I ever did. Before I used insulin, my sugar levels were up and down, but now I don't have to worry because the insulin has helped to level them out to near normal levels. Of course I have to watch what I eat, but over time I've learned what I can and cannot eat. After a while, you learn to listen to your body and it tells you when things are right or wrong."
(Please note: This is the regimen that Vivian's doctor has prescribed for her. Check with your own physician, endocrinologist, or nurse diabetes educator to determine the regimen that's right for you. For additional information on diabetes, visit Are You AWARE? A Special Newsletter Issue on Diabetes and Diabetic Retinopathy [3] by Debbie Sokol-McKay, OTR/L, CVRT, CDE, CLVT.)
"If my sugar gets too low, I feel disoriented. I used to wake up in the middle of the night in a sweat and wonder what was wrong. I'd test my blood sugar and see that it was too low, but after having a couple of Life Savers or some orange juice, I found that within minutes I felt so much better. When my blood sugar is too high, I get tired and sleepy."
"I had this one bad experience: I ate about six clementines — you know they're very small but I really enjoyed them! — and fell asleep right after eating them. My husband called me from New York and said I sounded funny and he asked where our son David was. I said I didn't know, and I didn't know his number. Apparently my speech was very slurred, and I guess I sounded stupid to him. When I came to, there were six guys in the room: my son, medics, police, and the fire brigade! My son thought I'd had a stroke."
"But when the sugar goes too high, it can be dangerous and cause a coma if you're not careful. I was lucky! They gave me something and I was all right, but it scared me enough that I've been much more careful ever since. Again, you have to get to know your body and listen to what it's telling you. This is really important."
"I was not prepared for vision problems," said Vivian. "The doctor who first treated me for diabetes didn't mention that I needed to take care of my eyes. He didn't suggest that I should go and see an ophthalmologist every year for a checkup. I don't think too many people know that you can lose your vision to diabetes. I've heard of people who have had legs or other limbs amputated, but I didn't know it could affect your eyes."
"My vision problems began just over ten years ago. I had cataracts in both eyes, and when I had them removed I was advised to see a retina specialist because there was a problem — the doctor diagnosed diabetic retinopathy. We've moved around the country quite a bit and I went to different ophthalmologists. But there was one who gave me quite a lot of laser treatments and, in my case, the laser treatment was too much for me and my eyes ended up with a lot of scarring."
"Shortly after we moved to Charlotte, North Carolina, I found an ophthalmologist who specialized in laser treatments. He gave me the biggest hope. He told me that although I had a problem with scar tissue, he would try to fix it. I had an operation, called a vitrectomy [4], and this helped to remove some of the scar tissue. I'm still considered legally blind, but I can see a little better since I had the operation."
"Some days I can see better than others, but I can see — I just don't see clearly. I can see an entire person when they're standing in front of me but I don't see them clearly, and my peripheral vision is not so good. When someone comes up from behind me and stands to my side, I don't always notice them."
"I have beautiful red hibiscus in my garden, but I've learned that red is the one color I have problems with. I just don't recognize it. If I'm sitting right in front of it I can see the red, but I have to be almost on top of it! I have real problems when labels are written in red ink on a colored background. For example, my vitamin bottle has a blue background and red ink. Well, you can forget it! It's impossible to read. I don't think it's so much to do with poor contrast — it's just that red seems to be a more difficult color for me to recognize."
"My vision changes along with my blood sugar levels. For example, I take 46 units of insulin in the morning, and 20 at night. So suppose at lunch time I decide to eat a lot of fruit, which I'm not supposed to because of the high amounts of sugar, then my sugar jumps up and my vision will change. By the time night comes around, my sugar drops and I can see better."
"At the beginning, it's disconcerting, but you really do get to know your body. It's hard to explain. My husband had a client who was a veterinarian and he told us, "When you study medicine, if you just studied diabetes, then you would know everything there is to know, because diabetes affects every single part of your body.' So it's not just the eyes, it's everything with diabetes."
"I just never realized this earlier. I never knew it affected the eyes — I just kept changing my glasses. I didn't know any different at the time. My biological sister had diabetes, but she would never accept it, and she died from it."
"Much of what I see depends on the weather! If it's sunny out, or when I'm in a car (surrounded by glass windows) it's harder to see. If it's a darker day, I can see better."
"It's always difficult when I go into a restaurant, because of the change of light. At first I can't see well until my eyes adjust. If I go into a store when it's very bright, it also makes me very confused. Glare bothers me so much. I wear regular non-prescription wraparound sunglasses and that helps."
"I don't recall much discussion with the ophthalmologist who told me I was legally blind. Or if there was, it went straight through my head because, again, I'm not one that wants to go and ask for help. Maybe it's my pride — after all, I raised my four kids, I was able to do everything, and all of a sudden I have to look to everyone else for help."
"It was hard. But I read a lot about diabetes. Whenever I saw anything about it, whether in a book or a magazine, I would read it. Through my reading, I felt that I learned just as much as I would have learned from somebody else telling me what to do."
"There was no one particular book. But because I've always been very heavy, I'd learned about nutrition and what I was and wasn't supposed to eat. But what I have to emphasize is that you must keep your blood sugar in control, your cholesterol, and your blood pressure. These are the most important things you must do because if you don't, your condition will get worse."
"With diabetes I learned that if I do everything I'm supposed to do, my vision seems to stabilize. My diabetes is now under control, and I'm able to use my magnifier, so I can see to test my sugar. Although the way I do it may look funny, it works for me — and that's important."
"My current ophthalmologist is very pleased with my condition. But I'd advise anyone with diabetes to visit both a medical doctor and an ophthalmologist — and follow their instructions. And if you're not satisfied, get a second opinion. You hear a lot about surgery to address vision problems but you don't hear so much about low vision devices and special services and resources, and that's a shame."
"My magnifying glasses are the biggest help to me — I wear them around my neck all the time. My daughter, Susan, took me to an organization where she lives in New York — the National Association for the Visually Handicapped (NAVH) — where I was able to see a lot of low vision devices."
"I got a really good hand-held magnifier from them, a checkbook guide, and a white computer keyboard with black large letters, and all of that is a great help. I also enlarged the dials on my washer, dryer, and microwave. I have no problem using the telephone, but I use it mainly by touch."
"I now need to look into special lighting. I have no problems reading outside with my magnifier where it's bright natural light, but the lighting in my home isn't bright enough for me to read."
"I also have problems reading in bed. In one hand I have my magnifier and in the other I hold my book, which is quite heavy and can be tiring. I have one gooseneck lamp, but I need to get more so I can put them in different places around my home."
"I also had a lamp with a magnifier that I hoped could help me do my cross stitch, but it just didn't work out. I tried a reading machine that was similar to a CCTV [5], but it had a moving tray that made me feel nauseous."
"In the early days, I knew there were special places to go for help such as the Lighthouse, but I was handling things okay and I just didn't feel I needed any further assistance. Getting the magnifying glasses from NAVH was a real breakthrough for me. I didn't realize there were these kinds of things and, as I've said, I'm not one for asking for help. My track record isn't very good in that area!"
"The thing that hurt me most — in fact it was devastating — was when I couldn't renew my driver's license. This happened about ten years ago. I used to drive a lot. My husband has always been busy with his work (and he still works), and I spent a lot of time on my own. I used to drive regularly from New York to Maine to see my kids and grandkids. I did everything, and then all of a sudden I couldn't drive — I couldn't even go to the store on my own. You can imagine how I felt!"
"I'm a pretty independent person, but there comes a time when you have to talk yourself into — and accept and realize — that you mustn't do anything foolish because of things that can happen. So now I don't drive — I'm housebound. If I want to go to the store, I need to take somebody with me because even in the store, where there's a whole bunch of canned goods, I want to look at them and I have to have them close to my eyes to see."
"I used to enjoy shopping in a mall, but I don't enjoy window-shopping. I can't see things clearly, so it's not much pleasure. It's also hard to go to a restaurant and read a menu, you know, unless you've got these magnifying glasses, but sometimes the restaurants are so dark."
"I don't get angry about these frustrations because I wonder if maybe it was my own fault in the first place. Maybe I should have watched my weight more when I was younger. I was always very heavy and I was always on diets. But I'm sad about the things that I can't do. I feel sometimes as though I'm imposing on other people, although they tell me I'm not."
"But when I'm driving with my husband or friends, and they're afraid they're going to get lost, I can tell them where to turn because I can recall the directions. Sometimes when we're looking for a store — one with big letters for the name — I may see the first couple of letters, but then I have to refocus my eyes to see the other letters."
"Other times, my memory tells me what the store is because I'm familiar with the names from when I could see properly. My visual memory and my life experiences help me a lot. When I'm driving around with my husband or friends, I have to remain pretty alert and that's why I do the crosswords at home so I can keep my brain active."
"I do have another problem that happened around the same time I was having problems with my eyes. Ten years ago, I was diagnosed with spinal stenosis [6]. My legs are fine, even though I had two knee replacements but the spinal stenosis gives me a lot of back pain, and walking is very difficult. I'm okay around the house and with short walks. As long as I can sit down in between, it relieves the pain and I can get up again."
"For instance, if I want to clear the dining room table and take things to the kitchen, then I get such awful pain in my back that I have to sit down. Then the pain eases and I can go again. Outside I'm all right if there are plenty of places to sit and rest."
"But really, when I leave my home I need to use a wheelchair. It's tough, but you learn to cope. Once in a while, just to get out for a change, my husband will take me to the mall. He pushes me in a wheelchair, but this is embarrassing and it's not what I wanted in my old age. But there was one good thing that happened to me being in the wheelchair — it got my family and me to the front of the line at Disney World!"
"We moved down to Florida about three years ago, and as soon as we found this house — I saw the pool. The house was all on one level with tiled floors and nothing in the way that's going to hurt me and I said to myself, 'this is it!'"
"I don't have throw rugs that I can stumble over. I don't bump into things because I know exactly where things are placed, and when I come to turn off the lights at night I know I'm not going to fall. No one taught me how to set up my house in a certain way, I just read — no particular book — and thought about what might work best."
"Remember, I'm a stubborn old lady but I do have some common sense. I know what I have to do. I don't always do the right thing, but I know what I'm supposed to do! "
"I used to be so active and there are still a lot of things I enjoy doing. I love the Florida weather, I love being outside, and I love the sunshine. I spend most of the day outside. I do my crossword puzzle, and I read (large print or regular-sized print) with my magnifier until it gets too hot. I love to read. I also enjoy crocheting afghans. I used to do cross-stitch, but I can't see to do that any more."
"Then I spend time on the computer. In the afternoon I take a swim. I love swimming, and I'm so blessed because I have a pool. I love the water, I feel very secure and safe."
"I get my exercise, which is important when you have diabetes, and as I can't walk far, the swimming is a joy. During the time I'm in the pool I feel no pain whatsoever. Then I do some more reading. But I have to say that whenever I go outside or to the mail I keep the phone on me in case I fall."
"When my husband is around, my life is totally different. He's antsy. He'll be at the computer, he wants to know about meals, he wants to go to Barnes and Noble, he wants to do this and that, and so we travel around together in the car, which makes a nice change for me. It's fun."
"His health isn't so good, but he's still working and traveling. He's a workaholic — always has been. I think he has more ambition and drive than many young people. He talks about retiring but it's not happened yet. He's been talking about it for the last twenty years and now he's talking about it again, so we'll see."
"And I enjoy my computer. We never had one until I had problems with my sight. At first I couldn't see anything on it, so I didn't use it. Then when I went to NAVH, I noticed blind people were using the computer, but at the time I wasn't all that interested. Then my kids set up my computer so I could play games."
"I love playing Scrabble, Boggle, and card games. I use large print on my screen and my spectacle and hand magnifiers are invaluable. I'm not computer-wise but my kids are beginning to teach me a few things. I send them e-mails, and they write back to me — even my little 9-year-old grandson! And now each time they come to visit they show me something different. Next time one of them comes, I want them to show me how to 'cut and paste.' I don't know how to do that yet!"
"My family made it easy for me to use the computer. Between using large print on my screen and my hand magnifiers, I can make out everything. The only hard part is that if I'm on the phone and want to make a note about something, it's difficult because I'm juggling with my magnifier!"
"I've tried to shop on the web, but I'm not very good when it comes to answering the questions because I'm not sure where to place the answers — so I telephone them instead!"
"I've also enjoyed those specially produced CDs on my computer where the print is large enough to magnify to 18 or 26 point so that I don't need to use my magnifying glasses. I use the web when I want to check anything out, such as a question about one of my plants. I have potted plants all around the pool and I enjoy having them around me. I take care of them myself but my husband is getting more involved. He's good at spotting diseases or bugs and seems to enjoy that!"
"But I find I have to stay focused on what I'm doing, especially when I'm cooking. At this point there's just my husband and I."
"I don't prepare any complicated food or meals, but I still bake cookies, especially when the grandkids are coming at Christmas time. But if I get distracted or walk away from what I'm doing, I know there's going to be an accident or a problem."
"Sometimes I can't see whether the onions are being sautéed or burned — I just don't see that clearly. So I have to stay with the task. I can't multi-task like I used to. Between my age, my eyesight, and everything else, I get confused. But I can still do it my way. As always — it has to be my way!"
"Since I've had these problems I've learned to appreciate what I have. I can wake up in the morning and still see the clouds, the sky, trees, flowers, and birds, even though they're not clear. I realize I'm not blind and I'm very grateful for that. You read stories about people who are completely blind, like Jeremiah [7] who you interviewed a few months ago, and you realize how lucky you are, but he's doing great, isn't he?"
"Also, I've discovered that people want to help. Since I've had problems with my sight, I find that so many people are very considerate. They open doors for me, and they help out if they see me struggling. I've realized that people really do have good hearts. In my own circle of friends, I don't know anyone with vision loss, but they've totally accepted my situation."
"I always listen to the news because I like to know what's going on in the world. I watch a little television, but if it's action I can't see what's going on and unless I sit real close, I can't tell if it's in color or not. If there's a program that doesn't have much action, like I used to enjoy Everybody Loves Raymond, then I watch that. I also enjoy watching movies at home if they don't have too much action — and of course, I can always ask my husband what's going on."
"But we do have another problem! My husband is very deaf, and I'm almost blind and this is the funniest part. When we go to a restaurant, I can't always read the menu and he reads it to me, but he can't always hear the waitress so I have to repeat to him what she's said. But he's very supportive of me. We make a good pair — and so we should after 56 years of marriage — and we still enjoy (the occasional) ice cream together!"
"But you know, I have to say I have a very close relationship with the Lord. He has helped me through all this time as far as anger and accepting things are concerned, and my life is more or less in His control."
"It's just a good feeling to know He knows what's happening to me. He knows where I am, He knows what problems I have, and all I have to do when I get discouraged is to ask Him to take the discouragement from me. He gives me a lot of strength in all areas. It's funny, I guess I could feel sorry for myself at times, but when I wake up and see the sun coming up I think, Oh Lord, what a wonderful world you have given me. Thank you for letting me see and enjoy it."
If you enjoyed reading this interview, see Jeremiah's Story [7].
Links:
[1] http://www.visionaware.org/my-story-interviews
[2] http://www.byetta.com/
[3] http://www.visionaware.org/are_you_aware_september_2007
[4] http://www.eyemdlink.com/EyeProcedure.asp?EyeProcedureID=58
[5] http://www.visionaware.org/what_are_the_most_common_non_optical_devices
[6] http://www.spinalstenosis.org/
[7] http://www.visionaware.org/my_story_jeremiah_taylor