Note: This is another in our new series of columns by local writers on disability awareness. Please send comments and questions for our writers to firstname.lastname@example.org
About halfway through the meeting to discuss my participation in this column on issues affecting those who are disabled, the editor leaned back and acknowledged that compared to people with physical challenges: “You don’t look disabled. You look like you don’t have any problems at all.”
And I thought: Exactly.
You wouldn’t think I’m disabled either, just by looking at me. I appear generally healthy, a bit overweight and not in the best of physical condition, but certainly not disabled.
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You may see me chatting with Christy in her gallery, as she sells me eggs and the bones that my dog, Billy Joe, enjoys. You may see me laughing with friends at lunch, or actively participating in a class before scurrying off. You may see me walking confidently, briskly even, into the grocery store. You may see me stop in the middle of a crowded aisle looking down as people and their carts swirl around each other barely missing me and assume I am just thinking about what else I need. You may even think I’m rude, blocking the aisle like that.
What you don’t know is that I can’t move – I don’t know where exactly the people are or where exactly they are headed; I can’t calculate their speed, the angle of their turn. I am frightened that if I move I’ll hit someone, that she’ll hit me. So I don’t look.
Even as you read this, you may be saying, “huh?” And that, I suppose, is my point. Even as I tell you what is wrong, you don’t understand and, not understanding, may think I’m nuts, not disabled. Certainly some doctors did, and family, and some friends and co-workers.
I used to say, “I get lost in space,” which I thought was a very clear, concise statement of the problem: I can’t tell by looking how far I am from a wall or a ceiling or from people moving around me.
“Lost in space” means something else to doctors, which I discovered only recently. It means balance difficulties, inner-ear problems, or not knowing where your body parts are without looking in a mirror. That’s why doctors always asked me to walk in a straight line and stand on one foot and to touch my nose before stating there was nothing physically wrong with me.
What you don’t see is that when I get home I pull myself up the four steps to my house, my groceries dragging my left arm down and perhaps banging on the stairs. I dump them on the kitchen counter before collapsing on my bed. When I get up later because Billy Joe is hungry; I find the ice cream I forgot I bought has melted. I’m thankful I see the chicken; if I didn’t find it until morning, I’d have to throw it away.
Not all days are like this, of course. On good days, I don’t clog aisles and instead climb the steps and put away the groceries when I get home. On good days, I write and walk Billy Joe between rests. I have more good days now than in the past. I’ve learned to pace myself and to take on new endeavors slowly.
My disabilities are invisible: mild traumatic brain injury, Fibromyalgia, and that much-maligned illness Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disorder (SEID), which is what the CDC now calls the illness.
There are other invisible illnesses and injuries too: lupus, Primary Progressive Multiple Sclerosis, Lyme disease, debilitating headaches, and more, named and unnamed. Without the empirical evidence the medical community relies on, too often these problems are attributed to emotional instability by doctors and character defects by employers, family and friends.
I hope that my contributions to this new series of columns will increase understanding of what invisible injuries and illnesses are like and a few of the unique issues faced by those of us who have them.
Carol Phillips lives in Silk Hope.
About the writer
Carol Phillips has published short stories in the County Lines, A Literary Journal, and the Red Clay Review, plus haiku in the Haiku Journal. She is working on a memoir about the human costs of a health care system that is unable to properly diagnose intangible injuries, like mild traumatic brain injuries. She lives with her dog Billy Joe and cat Smokey on six wooded acres in western Chatham County where she continues to write short fiction and haiku.