Stephen Hawking, black holes, wheelchairs, and me…
Last updated: March 2016
So tomorrow I’m getting a new power chair and I was joking then I have to get myself a Stephen Hawking voice to go with it. And of course Sheila, my wife, said why would you do that?
And I said I’m joking. Then she said I think you’re nervous and she was probably right. And I said Hawking (for whom I’ve had a particular fondness ever since a neurologist looked at my MRI and said I had some “black holes” in my brain) kept the same computer voice program that he first used many years before. And I added, of course, that humor is a very mature defense mechanism.
Why am I nervous? The F3 Permobil chair will provide more support, enable me to eliminate many transfers, (currently I have lift chairs in the bedroom and in my office which I transfer to for practicing therapy and watching TV, reading, etc.) But I have had to make several calls requiring EMT assistance lately due to falls transferring between wheel and lift chairs.
Sheila reminds me I often resist or delay many helpful changes that mark or get ahead of a worsening of my condition. I was reluctant to install hand brakes, use a cane or walker, ensuring my bladder was empty before going somewhere, or confine myself to using a wheelchair. So although I don’t think the anxiety is essentially a “denial of death,” as usual she may be correct.
I might compare some bit to my reluctance to buy new pants. I like the two five year old pair I wear during the warmer seasons. They each have mended and new tears, but they work for me in comfort and ease of use. Eventually I buy a couple of pairs, but I never try them on and thus four unworn pairs now accumulate in the closet.
I also have to learn a whole new set of small motor habits or what neuropsychologist Alexander Luria calls “kinetic melodies” and make fresh judgments about mental measurements and distances in terms of not only moving through the house, but getting on clothes, going to the bathroom, and on and on. Everything has to work right. No room for error. And the manual wheelchair doesn’t depend on battery power which can fail and its use builds strength and endurance. Now I have to commit myself to exercise rather than simply using my old chair. I know I’m undeservedly privileged to even have these concerns. More on that another time.
Do you ever have moments where you question your self worth because of your MS?