is it time?

i have been living “waist high in the world,” at least at work, getting around via wheelchair. (note: driving on carpet is hard.) while it has it’s frustrations, like moving myself out of the wheelchair and into a regular desk chair for comfort’s sake, and negotiating over the threshold out of the bathroom, it’s been a pretty good transition. no one has treated me any different (a few offers to help hold a door, which is very nice, and i had fun finding a old comrade from another department, and ramming his chair). there is one guy who used to pass by and exchange banter with me, who has hardly said two words in the two weeks i’ve been in the ‘chair. he seems to carry a sort of lost expression on his face, like he doesn’t know how to relate to me any more.

it is also tough on my arms – the upper body strength is not there, and by the end of the day, i’m kinda beat. i joined a gym, but its only been a week, so no results yet. it is weird driving a wheelchair around all the buff guys heaving weights around, watching themselves in the big mirrors. this gym, “planet fitness,” bills itself “the no-judgment zone,” like average joe’s from the movie dodge ball.

it makes me think of my youth – back even as “recently” as high school there were no people in wheelchairs. maybe it was just my home town, but where were all those people? there were no disabled people around. (ok, i’ll consider myself disabled now, i guess. i’ve been avoiding the terms, but the wheelchair is a bit of a giveaway.)

it has been an education. i am lucky in that i can still stand up, but i go through the supermarket, (which i used to just plain avoid.) and find that from the chair, i can’t reach or even see what is on the top shelf. and the  self-serve checkout line is difficult to reach, everything just about a foot out of reach. how much more difficult for those who cannot lift themselves up to reach those things. people do offer to help, but i don’t want help, i want to do it just like everyone else does – like normal people do. i have a nice light-weight chair, that i can fold and put in the back of my car, and i do get some odd looks as i stagger around to the back and haul it out, and, poof, there is a wheelchair! the very thought of going places like friends houses, or some restaurants, places not wheelchair-friendly, are out of the question, unless i can rely on my cane. anyplace that requires me going uphill are out of the question. anyway, lots to absorb and think about from my new perspective.

it has been VERY hot and humid this weekend, which pretty much means i am restricted to my bedroom where the ac is. i have been awakened for the past three night with big leg cramps – which i think are heat-related – that defy all my remedies – clonapin, homeoapthic pills, even a big gin and tonic (tonic water has quinine in it, which is good for those cramps, tho the gin doesn’t hurt.) so i am up, thankful that we finaly have satelite tv, and i don’t have to watch frasier re-runs. tho last night all i could find to watch was conan the destroyer. the little graphic on the screen said it was a “movie that doesn’t suck,” but it does. gawd-awful. arnold is a slightly better a governor than he was an actor – or maye it’s the same thing.

anyway, i started all of this with the thought of am  i approaching time to quit work? after work, and on weekends, i find it nearly impossible to find the gumption to do much of anything – my list of things i want to do just continues to go undone. i just don’t have the energy to get myself started. is that the measure for how i decide – when i don’t have energy for much else besides work? my neuro keeps asking me about it, telling me he has “the magic pen,” giving me the impression he thinks i should stop working. maybe it’s just the heat of late. i will probably put the whole idea off until i begin missing work from being too fatigued. i don’t know, the idea really bothers me and weighs on my mind.

now playing: radio paradise.

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Author: stephen

stephen harris is a writer, painter and a photographer who lives with his family in maine.

3 thoughts on “is it time?”

  1. I too have been wondering how long I can work. I’m certainly not immobilized but the heat and the demands of my job are taking their toll. I threw up at work last week and had to go to the clinic because of heat. My skin has been on fire. I am hoping this week will be easier. I am trying for a promotion outside the classroom so hopefully that will go through and help me keep working for at least a few more years.

  2. When to quit working? When your days off are spent doing nothing but getting enough rest so you can go back to work on Monday.
    At least for me, that was the tip-off. I didn’t realize how taxing on my body working was until I took 3 weeks off…for the first time in over a year I actually felt rested and better in my body. So, trying to maintain in the workplace definitely had a detrimental effect on “my MS”.
    Once this dawned on me, I discussed this with my doc and promptly applied for SSDI.
    To sleep until you wake and have the day unfold as it will is a blessing. Other elements of life come to the forefront that I can now partake of because I’m not so wiped out from earning the almighty dollar. Who knew?
    This is not how I planned it and I have not accepted this disease…but it is what it is. So I accommodate it…and for me that means being retired at the age of 55!

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