Disability Makes Me Angry

A friend of mine wrote an article that touched on the subject of identifying as disabled. I read it at an interesting time that fell on the heels of getting really pissed off at my body for living with this crappy disease.

Disabled?

You see, I don’t really identify as disabled.

• Yes, I have a parking placard that affords me the benefit of parking in space that may be closer to my destination (sometimes those spaces are not any closer to the door). My neurologist suggested this at a time that I was falling off curbs, unable to walk far distances, and basically, a danger to myself if I were to slip on puddles, ice, or nothing at all.
• Yes, I am unable to work a ‘normal’ 40-hour per week job. There’s no way I could get myself up and out of the house, every day and ‘be on’ for an extended period of time. My brain and body just couldn't keep up. But since I was self-employed before MS and I continue to be self-employed, I do not receive disability payments from a former employer or the government. I just try to continue to work how I can, earn what I can pay what I must, to continue to take care of myself.
• And yes, I am able to ride my bike for miles at a time. I’ve worked hard to build up the strength and endurance to do so. I’ve overcome fear and doubt to push myself beyond what I thought possible. But even cycling doesn’t erase my disability.

People who are disabled can be active, too.

Falling down

After having an accident on my bike last month, I had to take some time off from cycling. I only took off three weeks. It may not seem like a long time, but gosh darn it if I didn’t get totally wiped out and fatigued way too soon. This made me angry, then sad. I didn’t like the feeling of weakness in my legs at all. It really pissed me off.

Give yourself a break

Then I had to give myself credit for having just recently completed another round of Rituxan infusions. Come on, Lisa, I said to myself. You just got pumped up with an agent that actively looks for specific cells in your immune system to destroy. You know that you typically feel wiped out for a few days. Give yourself a break.

So this just pissed me off too because I don’t want to feel weak, even if there is a perfectly good reason for it. I want to remember what it feels like to just go, without any concerns.

Keeping up

Just yesterday, my husband and I were doing some yard work. We have a metal fence that provides the perfect support for an ornery system of wild grapes. I was cutting the grape vines off of the fence and pulling its tentacles out off nearby trees and bushes. At times, I was able to pull some of the root systems out of the ground too. It’s dirty work but someone has to do it.

Trying to finish what I start

The longer I was outside, I more fatigued I became. The longer I was outside, the later in the morning it became and the temperatures rose. I reached a point that I was so tired that my husband suggested that I stop, go inside to cool off, drink some water, get cleaned up, and not come back outside to work. That pissed me off. Again I hate feeling weak and unable to complete the job. I hate having less ability to do the things that would have been easy before MS.

The struggle with limitations

I struggle with what these limitations mean. Having less ability gets awfully close to resembling a disability.

Even as a musician, I experience disability. Considering all that multiple sclerosis and rheumatoid arthritis have done to my hands, particularly my left hand, I am not able to play what I once could. Some pieces which used to be my go-tos for high-intensity power and emotional expression are simply too exhausting for the arms and hands. Pieces that require quick and precise left-hand movements become sloppy or sluggish.

Ability versus disability

My movements and activities are limited because of disease and that clearly falls within the definition of disability.

• So am I disabled? Yes
• Do I identify as disabled? No
• Do I feel disabled? Sometimes, and it pisses me off when I do.
• Do I want people to see me as disabled? Not really, but I’d like people to recognize my limitations and to be kind when I’m struggling with those limitations.

The term disability is like a loaded gun that is cocked and ready to be released at an inopportune moment. We should not throw it around lightly. And what it means for each of us is unique. I might prefer to say that I have limitations, but that doesn’t erase the fact that disability will always be part of my life.

So what about you...what does disability mean to you?

Thanks for reading!

Lisa

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