Animated GIF. William Shatner as Captain Kirk screaming CANE in place of KHAN.

Thursday, February 26, 2015

Is Disability Taking Over?

It is -4° out right now and for the second day in a row (and third time this week) I am staying in.

Staying alone in one’s house can either be a relief or be very isolating. At the moment, because I’m feeling stranded more than voluntarily staying in, it’s isolating, and as I realized that there was no way I was going to be able to go to the pool or board game night or see people, I started cursing being disabled. Vehemently.

And then I stopped and wondered… Was this sad, lonely, isolated feeling actually related to my being disabled? I’m used to having great difficulty doing the things I really want to do because of physical limitations. Getting out of the house is harder. I have a lot of trouble dealing with temperature extremes (common in people with MS). I can’t put my hands in my pockets while walking because I need to hold on to my walker. I have no way of holding an umbrella in the rain. Lots of little things that add up to one great feeling of suckitude.

But the feeling of isolation from not going out? I’m blaming it on being disabled, but isn’t it from being human?

 I think the point of this introspection is not so much to ascertain whether it’s disability or humanity that’s the root cause of my feeling trapped, so much as it is to ponder the fact that being disabled as a cause of my misery came straight to mind, and I had to remind myself that it’s not just people with disabilities who are trapped in by the weather and feeling isolated because of it.

The matter here is two-fold. There is the fact that I hold on to these societal stigmas about disability being a horrible thing, as I tend to blame bad things on MS and attribute good things to my own general awesomeness. That’s a matter for a separate post that’s already gestating in the recesses of my consciousness. What I want to write about is the fact that I personally feel that my identity as Disabled Person is taking over my identity of Alisa. Who Happens To Have A Disability Among Other Noteworthy Attributes.

Artists are often accused of having a certain level of insanity due to their fervent dedication to their masterpieces, eschewing normal standards of socialization, but this accusation is tempered with a sense of awe when their paintings, symphonies, sculptures, sweaters, etc. are unveiled for all to see. Yes, there was obsession, but the obsession lead to something perceptible to most.

I feel like at times I have a similar level of insanity from having to cancel out on social engagements because it’s too hot or too cold or my bones hurt or I have an MRI or a doctor’s appointment. My life swirls around issues of my physical limitations like a painter’s swirls around the need for inspiration, only in the end I have nothing to show for it.

It bothers me, that my identification with one single part of my self has become so overwhelming. I am a great many things that could take over as the id to my ego. I am a knitter, a chorister, a grandchild of Holocaust survivors, a Buddhist, a Jew, a vegetarian… I guess maybe because those are all choices I’ve made, or interests I have, rather than the manifestations of a neural buffet set out for my errant T cells.

I think my discomfort with my physical limitations and my constant feelings of being unfamiliar with the movements and sensations in my body may be a major source of my feelings of being dominated by disability, but it’s so, so, so, so hard to (as my therapist would say) take a moment to settle into my experience of my self, because my self is so very different from how I feel like it should be.

That was badly phrased. When I say that my self is different from how I feel like it should be, I’m not talking about life aspirations. This isn’t “I’m sad because I’m a junior manager in a paper warehouse and it’s hard to settle into that experience because I really feel I should be a Supermodel and Grammy-winning solo artist.” I’m not even sure how to really explain this. It’s like…

I have thoughts, and those thoughts include “Left arm, lift up six inches.” When I do that with my right arm, my right arm obediently lifts up six inches with minimal effort and stays there until my brain says “OK, arm, relax.” But when I tell my left arm to pick up six inches, it clumsily lifts up like it’s heaving out of a pool and swings around and tremors. Trying to just be in my body for a moment feels like trying to reach Enlightenment while extremely intoxicated; not happening.

Wow, I’ve gone incredibly off-topic from my original premise. I think I’ll end this and post it before I sink into maudlin self-pity. I really would love feedback on what I’ve written, even if it is just to say “Hi. I read this.” It’s nice to know someone’s listening.

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