What It Means to Me to be Disabled

This is difficult for me. What it means for me to be disabled is not an easy subject to write about.

I wrote an article about other people's ideas of a definition. That was easy. Reporting on what has been documented, I wrote an article about the definition of "disability" as provided by the ADA, Social Security, and other organizations on the Internet. It was pretty good, but somehow it was not finished. To complete the definition, I feel I have to add the personal part. Here it is.

At work, my friend and I were walking out of the office one day, and I suddenly fell down, tripping her. Another time I was walking through the mall and suddenly I was crumpled on the floor. No warning, no dizziness, no tripping; just falling as if through a trap door. On the way to a meeting, I fell in the parking lot, ripping my hose and badly scraping my leg. That was the last day I wore heels. I had balance problems, but I did not know why, and my doctor did not know why. I started using a cane and began a campaign to uncover the mystery of my sudden falls.

My balance was deteriorating, the strength in my legs was almost gone, and I was experiencing fatigue and blurring vision. I was finally diagnosed with multiple sclerosis. The word "disability" was not used when the doctor told me I had MS. It was not until I had the electric scooter and received my license allowing me to park my car in handicapped-designated spaces when that word crept, no lept, into my mind. By then, I had been living with this monster for more than a decade. My car labeled me as disabled, and I had progressed from the cane to the chair.

It was still several years before I said it aloud. "Ability" is a nice, positive word, but when "dis" is added, it becomes negative and ugly, almost embarrassing.

I'm confronted with many small things each day: my inability to apply makeup or sculpt or paint or even write because my hand doesn't work. It is a small thing that I stay in bed sometimes because it is so difficult to get up.

Then there are bigger things: how tiresome it is to sit all day, I cannot take walks or dance, and I do not see well enough to read any more. It is not comfortable to roll over bumpy sidewalks and it is necessary to plan my route based on curb cut locations. It is difficult to transfer from bed to chair and back, and I have been injured more than once getting in or out of the car.

Then there are even bigger things like constant daily pain and discomfort and overwhelming fatigue. I often envy those who see my grandchildren often, and take them places. It is a big thing I cannot go to visit my mother who is in a full-care facility because of her strokes. I have to rely on my kids to come see me, and rely on my brother to care for our mother. It's not fair to them, and I miss seeing my family more often. Those are big things.

That is disability, defined by what I can no longer do. But that is not the whole story.

There are some things that balance out. I have less time and less energy than I did before, but I have fewer commitments. My time is generally my own, and I can take my time when needed. I have all the time in the world when I want to write, which I truly enjoy. I just have to set my priorities so I can do what I want to do and let the other stuff fall by the wayside.

I have a new perspective. My life is simplified. I have an appreciation for many things I did not notice before, and take delight in small things. Yes, I am disabled and cannot do many things I enjoyed before or thought I might enjoy one day. I am lucky, however, because my disease progression is slow. I am also lucky to have someone I can rely on, to have the Internet for information, and my friends and family. I am lucky to still have my spirit that keeps me going and trying new things. Disability gets me down, but I'm not out yet.