The Post I’ve Avoided Writing and Why
Some months ago, I was asked by a reader who had just lost a good deal of his vision, “Why don’t you ever write about how blindness really sucks?”
I was tempted to answer along the lines of what John Grisham said when he was asked at a book signing why he was always writing about crooked lawyers. He explained that, in the ten years he practiced law, he found that all the lawyers he knew were honest, worked long hours, cared about their clients, and didn’t make a lot of money. But, if he wrote about them, no one would buy his books.
I’ve always thought that, if I were to collect all of these blog posts into a book, I would title it Everything You Ever Wanted to Know about Blindness but Were Too Polite to Ask. In doing this, I’m in somewhat the same position as Grisham: if all I do is write about how blindness sucks, no one would ever read this blog.
But this was a very bright, thoughtful, highly-accomplished man, and, upon reflection, I think the answer to his question might be a bit more complex than it might first appear.
To be sure, I’ve written a lot of posts on some of the “suckier” things about losing your vision.
I Think You Can’t; I Think You Can’t
The Dumbest Questions I’ve Ever Been Asked as a Blind Person
Tell Everyone about Your STDs and IV Drug Use
Being Healed — Whether You Want It or Not
I’m Just a Girl Who Can’t Say “No”
Some Pet Peeves of Being Visually Impaired
Horses, Zebras, and the Secret Medical World of Blind People
How Do Blind People Know What Money They Have?
Only One Blind Person at a Time and No More
So, I suspect he was looking for something more to answer his question.
To do that, let me go back several decades to a time when I was attending a professional conference I’d never been to before. None of the programs being presented at 9:00 really interested me, but, not wanting to waste the hour, I decided to sit-in on a session hosted by a woman I had heard had an excellent reputation, although it was in a field I knew little about.
I didn’t look forward to much more than killing sixty minutes. I couldn’t have been more wrong. It turned out to be one of the most fascinating talks I ever heard.
She was a clinical psychologist, and her talk was a review of the half dozen things that research in psychology suggested contributed most to personal happiness. Regrettably, time has dimmed my memory of much of her talk; however, two of the points she made may be helpful in explaining the answer to my reader’s question.
First, one of the things that strongly correlates with being happy is feeling that you are in control of your life. At the risk of belaboring the obvious, everyone, and there are no exceptions, who is losing their vision is confronting a loss of control of many of the most important things in their life. Many of the things that you have taken for granted that gave you self-confidence and the feeling of being in control –driving a car, running a house, holding a job, being involved in the community – are called into question.
It’s little wonder that someone would feel that life “really sucks.”
Second, another thing that correlates strongly with being happy is feeling you are understood by the people who are important to you. Just think of the divorcing couples and unhappy marriages in which one or both parties feel they are not understood by their partner. That doesn’t even count the unhappy teen-agers who don’t feel their parents understand them or the parents who think their teen-ager is incapable of being understood.
When someone is losing their vision, not only are they entering a world they don’t understand but their friends and family are struggling to understand it as well. It’s hard to expect others to understand how my world is changing when I’m not really sure that I understand it myself.
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There is an important thing to notice about both of these correlates of happiness: it’s not enough to be in control of your life or to be understood; what is important is that you feel that you are in control and that you feel that you are understood.
When someone is losing vision, friends and family may feel as though they are helping by swooping in to take-on tasks they don’t feel the person losing their vision can do any longer. Their hearts may be pure, but assuming the role of superhero, regardless how well-intentioned, is undermining any feeling that their friend can ever have control of their life again.
After all, how can I be expected to feel good about myself when everyone around me is signaling by the way they treat me that I’m not in control of my own life?
Lawrence of Arabia and the Road to Hell
Feeling that you are understood is a little trickier. Psychologists tell us that sympathy is looking at what someone else is dealing with through our own experience; empathy is trying to look at what someone else is dealing with by sharing their perspective of what they are going through. Sympathy invites pity; empathy encourages partnership.
No one is ever going to fully understand what vision loss is like for someone else, but that’s not really the goal. Lamaze classes aren’t popular because they ensure that both mother and father will experience child birth in the same way but, at least in part, because they enable both parties to better understand and share the experience as best they can together.
In the same way, simply knowing that the important people in your life are doing their best, however imperfectly, to understand what you are going through as you are losing and adjusting to your vision loss is one of the most important gifts they can give you. Understanding is not the same thing as pity or trying to be a superhero.
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Regaining the feeling that you are once again in control of your life by learning blindness-related skills once you have started losing your vision is not something that is quick or easy. It’s certainly not fun. But, and this is extremely important, once the process is underway, just knowing that you are taking the first steps to regain control of the routine things in your life will start you on the path to feeling better about yourself.
A final note should be directed to the person losing their vision. While it’s understandable that the spotlight is on you, it’s also important to remember that, at the same time, the people who care about you are experiencing their own stress. Be patient with them adjusting to the changes in your life. The more you can all help each other, the better everyone will be in the long run.