You are Not Alone
How can we be among two million people on this planet who have multiple sclerosis and still feel utterly alone?
We know of these multitudes intellectually, of course. But knowing that millions of others are going through it too doesn’t seem to make us feel any less alone. In days long past, people suffering with Hansen’s disease—also known as leprosy--lived in leper colonies on remote islands. It was incurable and poorly understood. Most uninformed souls thought leprosy was contagious. Self-segregation and forced segregation have long been a method of isolating groups of people, sparing the “normal” population from feeling discomfort at having to encounter something unfamiliar—and therefore threatening. Times have changed, however. But not that much.
Chronically ill people naturally seem to self-isolate. We talk a lot about hurt feelings and misunderstandings driving us away from family, friends, colleagues, and the mainstream. We’ve changed. And we characterize that change as mostly negative. We aren’t who we used to be, and that’s a bad thing. Our familiars don’t seem to know what to do with us. And honestly, neither do we. There’s no handbook for how to go from able-bodied to disabled. We have to write the book ourselves. Effectively, we write the owner’s manual, the road map, and the maintenance record of our journey through a flawed life. And as all writers know, the act of chronicling anything is an isolated activity. As the host of an ever-changing medical condition, we stay acutely aware of change. Nobody likes change. Life isn’t supposed to challenge us this much or this often. It isn’t normal. But when change becomes the norm, it isn’t the kind of experience we can talk about around the water cooler. It’s just too serious. It scares people. So we keep it to ourselves. Our shameful little secret.
But self-isolation has a practical basis, too. We’re fatigued, exhausted most of the time. Lassitude doesn’t lend itself to partying, attending sports events, running marathons, or to any physical activity. For us, everything is a physical activity. The mere act of talking to people wastes us, dehydrates us, numbs our brains, muscles, tendons, bones, and nerves faster than if we had pushed ourselves through an iron man competition. Multiple sclerosis punishes our bodies as if we were pro athletes, only without the physical conditioning. I might resent having MS a lot less if all that suffering gave me a six-pack and chiseled calves.
A loss of dignity
We self-isolate to feel more in control of our most bothersome symptoms. Bladder/bowel incontinence, dizziness, foot drop, among many other aggravations put us in danger should they happen in an unfamiliar place far away from our adult diapers and grab bars. Fear of falling is a big reason why we keep ourselves at home and out of harm’s way. Public humiliation can feel just as bad if we lose control of our bodily functions in front of an audience. In both cases, a loss of dignity takes front and center. We feel cowed enough by the invisible badge of disability that we must wear, even when we are the only ones that can see it.
We are not alone
We are not alone. During the 1990s,the famous catchphrase of the X-FILES was something is out there, which means basically the same thing. Like with any good monster movie, something is out there, aka we are not alone, was meant to scare us until we turned the lights on and the television off. Unlike your garden variety old monster movie, the X-FILES got scarier when conspiracies were exposed, the most troubling being rogue agents working with aliens to infiltrate the population. No matter what Scully and Mulder did, the deck was stacked against them.
And us? When we assure each other with the words you are not alone, we’re trying to soothe the pain and grief of being different in an indifferent world. The deck might be stacked against us, but look at the bright side. At least we don’t have to worry about getting beamed aboard an alien vessel and probed with a laser.
Do you celebrate your MS Anniversary?