In the mid-1950s, when she was in her late teens, Deb’s cousin Susan was diagnosed with a progressive form of MS and the constant progression of her disease curtailed any plans she had for attending college and enjoying a career. Instead, she spent much of her life confined to a manual wheelchair and isolated in her own home. By the time the Americans with Disabilities Act was signed into law in 1990, Susan was already bedridden, and even if she had still been able to leave the house, the curb cuts, accessible businesses and restrooms, etc. would be uncommon for another two decades.

Thus, Susan’s isolation was real; my own, though not real, is real to me. These days, as I’ve written before, as one day dawns I cannot remember what I did the day before. I wake ready to face the world. I move about readying myself to go out and to do the day’s errands. By days’ end, though, I cannot remember that I have even left the house. Day after day, I imagine that I’ve done nothing more than sit in this room watching television and playing on the computer. It’s an odd kind of isolation; I am not alone in this room, but I am certain that I am.

Every day – perhaps several times a day – I ask Deb whether I left the house. She answers in the affirmative, but even with her reassurance I can’t remember. Each day, as I come to realize that another day has passed and I am unaware of anything that has happened I sink back into a kind of fear – a realization that I can’t be alone, that I am afraid, that I can’t drive myself or even go on a jaunt around the neighborhood. In other words, my independence is gone.

I think of Susan often these days. I have, in fact, co-opted her history by imagining myself as vulnerable in a way that is similar to hers. She couldn’t function on her own; she was always in need of assistance. I imagine that she resented that in the same way that I resent it now. In all honesty, I get irritated when someone around me tries to anticipate my needs. But that’s not fair; at the same time that I resent that anticipation, I expected it.

In other words, there are times when no one can please me, no matter how hard they try. In other words, there are times when I am so frustrated with my life, that I take it out on the people who are closest to me. It’s not fair. I guess that at this point I am supposed to say that I will try harder, that I will turn over a new leaf. It would be disingenuous for me to make such a promise. What I will say is that I know this now and I will be aware.

2 thoughts on “Susan
  1. Altough your story is heartwrecking and painful I’m glád and grateful to be told I’m not älone in my doubts and lost life as it was.
    It comforts me, thank you for writing and sharing.

  2. It’s not fair, but it’s okay to be who and where you are, including taking out on your loved ones sometimes. It’s called being human. Love you.

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