Presented by Dan Roberts to the International Low Vision Support Group, February 2017)
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Those of us who are affected by vision loss often feel like we are in a vacuum, dealing alone with the physiological and emotional effects on our personal lives. We hesitate to discuss our concerns with anyone, so we often remain stoic. We have few outlets for what we consider to be our unique problems, and if we do find an outlet through a support system of similarly-affected individuals, we tend to keep silent. Everyone else, we think, is so positive and accepting of their conditions, it would be a shame to bring them down.
Over the past couple of decades as a low vision educator, I have conversed one-on-one with countless visually impaired seniors. I have been privy to their hidden thoughts, and I have learned that we have much more in common than we think. It’s just that we don’t often have the time, opportunity, or audacity to reveal our sameness to one another. This is unfortunate, because we need to know we’re not alone with our thoughts. So I have decided to reveal the most common hidden thoughts that have been shared with me. Names withheld, of course.
Here, in no particular order, are 30 comments I hear most often. Some of them can be unsettling, and even more so, because I offer no remedies here. Instead, I hope, by discussing these issues in group environments, people might derive a better understanding of their own hidden thoughts. Opening the curtain like this and seeing ourselves mirrored in others may help us realize that we have lots of compassionate company.
1. I see things and people that aren’t there. It’s a harmless condition called Charles Bonnet syndrome that affects lots of people with low vision. I don’t tell anyone I see things, though, because they might think I’m crazy.
2. I see things that ARE there, but I don’t mention it. It’s just too tedious to constantly explain how relatively good the healthy parts of my vision are. I feel dishonest sometimes not telling people I actually see pretty well under certain conditions; but I just get tired of teaching something that cannot be totally understood by someone who hasn’t walked in my shoes.
3. I’m embarrassed when I don’t recognize close acquaintances. They always forget that I can’t make out their faces, and I feel awkward reminding them to identify themselves. That makes me look like I’m just fishing for attention. Do they really forget to identify themselves, or do they just not care enough to make the effort?
4. I can’t find what is right on top of my messy desk. Clutter makes it difficult for me to distinguish individual objects, because there is too much visual input for my eyes to handle. I feel stupid when I can’t see something that’s right in front of me.
5. It’s humiliating that I read like a third grader. I used to be a fast reader, but because of my vision loss, I need more time to discern words and sentences. I know I can increase my reading speed with practice and professional help, but I need to decide if I want to put forth the effort.
6. Maybe I’m too old to keep trying to find new ways to see. Maybe I should just accept my impairment and spend my remaining time enjoying what I have. What would be so wrong in letting other people do things for me now?
7. I walk slower than I used to, and that makes me look old. I could use a support cane or a walker, but what would my perfectly able friends think? How embarrassing it would be for them to pity me!
8. I’m reluctant to use a blind cane or a guide dog. Both take a large commitment to practice and training, and I’m not sure I want to be responsible for another pet at this time in my life. Also, wouldn’t a cane or a guide dog advertise my visual impairment and make me an easy target for predators?
9. I have trouble understanding speech. Since my vision makes lip reading difficult, people need to enunciate better. And speaking louder doesn’t help! And why do TV shows and movies think they have to play music all the time? Don’t they know how that interferes with understanding speech?
10. I misinterpret what people say. A roll of the eyes or a hint of a smile are all a sighted person needs to distinguish between sarcasm and honesty. Without those kinds of sight cues, though, I sometimes have to ask the person’s intent, which makes me appear dense.
11. I sometimes get tired of overly-positive people. “Look at the good side,” my friend likes to say. She may be playing Pollyanna for my benefit, but she needs to realize that I can handle serious discussions. It’s hard to see a lot of positives in losing independence and capabilities, so I would appreciate a little more honesty and less chirpiness.
12. I have “down days” for seemingly no reason. I know that without valleys there would be no mountains, but living with low vision, those days in the valley can get awfully long.
13. My vision isn’t as good as my doctor says. My eyes are tested under the best conditions in the clinic, but my normal environment will not always be so still, well-lit, or clear as those vision charts. The doctor is good at diagnosing, but I’m actually a better judge of how I see in real life.
14. I enjoy sitting in dim light. Which seems to bother my family, but it’s easy on my eyes and healthy for my retina. I still enjoy opening the curtains on a beautiful day.
15. I hate losing my independence. I wish people would realize that I’m still the captain of my own ship. As long as I’m of sound and open mind, I think I will be the best judge of what is good for me.
16. I get easily frustrated or angry. Who wouldn’t? This disease has attacked me silently from the inside, and there is not much I can do to avoid the damage it can cause. It’s never going to go away, either, so I feel like I’m living with the sword of Damocles hanging over my head. That would tend to make a person a little hard to live with at times!
17. I feel as if my family and friends don’t care. If I say anything about my vision problems, they often just nod their heads sympathetically or change the subject. Even worse, they offer suggestions like getting new glasses or trying the new pill they heard about on TV. I think I’ll just keep news about my condition on a need-to-know basis.
18. I feel as if my doctor is dismissing me. He talks to me, but not with me. I’m afraid to ask questions, because he is always in such a hurry, with more patients waiting in other rooms. I wish he would at least tell where to go for answers and support.
19. I sometimes suspect that I’m getting unnecessary tests and treatments. I hate to think it, but is my doctor just trying to pad her pocket to pay for all of those staff members and expensive instruments?
20. Sometimes I think God gave me more than I can handle. I know they say he wouldn’t do that, but maybe he gives me more than I can handle so I will see how much I cannot handle. That would make sense, because it would give me the humility to accept help graciously. No matter how well I learn to be independent, there will always be times when I simply cannot handle a problem on my own.
21. I don’t want to use a computer or smart phone. High technology overwhelms my brain and tests my patience. I know I’m not too old to learn, but maybe I’m too old to want to learn. That’s okay, isn’t it?
22. Is science ignoring me? In my lifetime, scientists have halted epidemics and cured all kinds of infectious diseases, so when is it my turn? My eye disease isn’t life threatening, but it is quality-of-life threatening, which can be just as distressing.
23. If a cure is found, I’m afraid I won’t qualify for it. There is a chance that my age, treatment history, stage of development, or access to care may preclude me from certain cures. I know it would be good news for others, but would I be a rotten person if I felt cheated?
24. I feel guilty about the health and nutrition choices I make. I should eat better and exercise more, but sometimes I have an affair with a doughnut or use the rain as an excuse to not take a walk. Anyway, my doctor says my psychological health is important, too. So I may die a few minutes earlier because of a doughnut, but I’ll die happy.
25. I sometimes think my life isn’t worth living. I once had a social life, good health, and a hopeful future. Now my poor vision, combined with problems of aging, is putting the brakes on everything that used to get me out of bed in the morning. My days are all the same, and my nights are growing longer. I can’t do many of the things that used to keep me busy. And when I’m not busy, time moves so awfully slow. What’s the use in living if I can’t live well?
26. I get tired of hearing how much worse off I could be. True, some people are blinder, poorer, and more disabled than I, but there are also those with good eyes, more money, and perfect health. Why should I feel better than the unfortunate any more than I should feel worse than the fortunate? All the empathy in the world for others won’t keep me from sometimes throwing a pity party and inviting only myself.
27. What did I do to deserve this? Maybe I should have eaten better, or quit smoking, or gotten more exercise, or stayed out of the sun. Or maybe it was bad DNA, or not enough days in church. Or maybe I should think more about the bridge than the water that has passed underneath.
28. I’m losing my self confidence. I realize that, as I lose more vision, I’m becoming more vulnerable to mistakes. This causes me to be less courageous about tackling new projects, making me look lazy or unmotivated. I have seldom lacked in ambition, so I worry that others might be thinking that of me.
29. I’m increasingly obsessive. My family and friends think I’m persnickety, but my future self will appreciate how considerate my current self is in keeping things and thoughts organized.
30. Sometimes I get tired of being independent. I know, with a little effort and patience, I can do most everything by myself. But there are times when it would be nice if I could say “please help me” without looking incapable.
That’s it. 30 hidden thoughts of the many visually impaired seniors I’ve met. I trust that, through their honesty, they are offering their company to help us realize we’re not alone. By shining a light on things we might think are too dark to share, I hope we will be able to see them more clearly. And clarity can often provide relief.
This presentation is meant to be discussed, either with a group of like-minded people or as a way to help us communicate with a friend or loved one. These musings are normal, even common, among people who are living with vision loss. Keeping them inside is not only unhealthy for the people who own them, it is selfish and unfair to those who need to hear them.
Thank you for understanding how important we are to one another.
Presented by Dan Roberts to the International Low Vision Support Group, February 2017)