Gains vs Losses

(Animated image from StackExchange question about perceptual illusions)

Sunday evening one of our friends said something that came as a revelation to me.

When she first became ill, she was only in her teens. For a long time she was mostly bedbound. Now she needs a wheelchair whenever she has to walk farther than from one room to another at home. She hasn’t gotten well enough to get a job, even part time.

But she loves her life. Her general attitude is optimistic, upbeat, enjoying the present and looking forward to the future.

I had thought it must be terribly hard getting sick in such a way that early in life, before establishing the sense of identity and the resources that people usually begin to build up in adulthood. It is indeed hard. She acknowledged that.

But she went on to say that everything since then has been a gain. It’s that way for most of the other patients she knows who got what she has in their teens and are now approaching middle age. For them, life is a series of occasional new gains. Not being bedbound any more. Being able to go out briefly in a wheelchair. Being able to go out longer in a wheelchair. Regaining the ability to remember what you read in the last paragraph so the next paragraph makes sense, and eventually even being able to read a magazine or book again. They didn’t have much yet when they got sick. After the initial loss, life is gain upon gain, joy after joy.

My friend with MS is like that too. Her MS hit when she was a university student. It took her very far down, very quickly. Doctors expected her not to reach her 30th birthday. For two years she could only move a few muscles in her face. We met when she had just gotten enough better to go out for a couple of hours in a wheelchair with someone else pushing it.

She delighted in every bit of accomplishment, small or large. Walking a little with two crutches. One crutch. A cane. Custom-fitted braces for her lower legs. Not even braces. Taking a class at the university. Getting an electric adult-sized tricycle to go to and from the university herself. Learning to drive a car with hand controls. Somewhere in the middle of all that, her 30th birthday, decades ago.

That doesn’t mean life never became awful again. MS often has a relapsing and remitting pattern. Hers certainly does. Up and down, over and over. Aging has stepped in and that can be rather grim. But she has the attitude our local friend was talking about. She got hit when she didn’t have much yet. She thinks and feels in terms of possibilities.

Our local friend Sunday evening said it’s harder for those who get the same illness as adults. They have built up so much more by the time they get sick, and illness steals it from them. Chronic illness is a long series of losses for them. It casts a deep shadow on their outlook.

A story of gains versus a story of losses. I never thought of it that way before. When I was a volunteer sysop in the long-gone Chronic Illness Forum, I should have noticed this distinction, but I didn’t. Also, I should have noticed it from my own experiences in life.

It was startling to have both paths mapped so clearly.

I know people who have crashed into this for the first time themselves in the past couple of years or so. Chances are that we all do, whether or not we’re aware of it yet. What they are grappling with is not always the same. At the least, some are young enough not to have much yet. Unless they are among the unfortunate who never get any better, their chronic illness will be a story of gains. Others were better established when chronic illness set in, so it is taking things they own, things they used to be able to do, and things that used to be key parts of their identity. Theirs is a story of losses.

It was a whopper of an insight. I hope I never forget it.