Let me tell you what it's like to be in this body
I think when people see someone with a cane they figure that the cane is just there to serve as a third leg and extra support. Sometimes this is true for me if I hadn't been walking for long distances (for me a long distance is about a quarter of the city block). After that, my legs start to not want to respond to me. I have to use different muscles to make my legs work. There have been times when I have not been sure that I will be able to make it to my destination and by destination I mean my car or a chair I'm aiming toward.... in order to get into my car, I have to lift my leg with my hip muscle because my quads don't want to lift my leg up that far. Quadriceps are supposed to be the strongest muscle in your body. If you lift your leg up and asked someone to push down, you should be able to resist and keep your legs stable. I can't do that. And it's not because my muscles are weak. It's because my brain doesn't send a signal to my muscles.
In a totally rested state, my body still doesn't feel normal. My fingers always feel like they are asleep or that they've had a shot of Novocain. My legs feel tingly, as if they are on the verge of going to sleep. I am very prone to restless legs syndrome, in which case my legs feel like they have ants crawling up and down on the inside and they are forcing me to kick. I get dizzy easily, I can't turn myself over in the bed, and I don't hear very well anymore. If I was 85, is might be sort of normal. But I'm not!
I recently received three questionnaires regarding my limitations and physical changes I have due to my MS. Lots of the questions are about my mental capacity. For instance, can I count change or manage money, do I need to be reminded to do certain tasks, or do I have difficulty getting along with people. I am wondering if, because I have mostly have all of my faculties, I will be turned on for disability. Stephen Hawking can function cognitively, but no one would deny that he is disabled!
This whole process of trying to get disability is so fraught with difficulties, both because of the tedious process and because of the emotional turmoil. I've been working since I was 18. I worked full time all the way through grad school and haven't worked less than full time since I was laid off from The Bridge, but I am pretty sure, but my body is not able to take me through a full-time day anymore. Anyone extra thing added to my day, going to the post office, grocery shopping or just shopping, means that I will have to take time to sit and recuperate for at least a half hour to 40 minutes. And I don't recover completely. Each time I do something like that, my energy level to do anything else is depleted.
I am not trying to tell you how terrible it is. I'm just trying to give people a picture of what it's like to be in a body that doesn't work the way it's supposed to. Handicaps are so much more complicated than they appear in the outside. And multiple sclerosis is so tricky and sneaky because you never know what it's going to do to you.
So do I want to be a disability? No , I would much rather be able to continue to work full time. Do I want a handicapped parking? No, I would much rather be able to walk across the parking lot. But do I think disability help me be able to not have to stress about whether or not making enough money? Yes. Do I think that not being stress will help me manage my MS more effectively? Yes.
I don't want to stop being a therapist. I just want to be able to choose not to kill myself trying to be one!
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