Gratefully We Roll Along

by Dean Kramer
November, 2006

It’s Thanksgiving time. I’m beginning my seventh year writing this column. I’m grateful for the support of many, many readers. Thank you all!

Despite having had MS for over 22 years, I can still walk short distances using some sort of mobility aid (cane, walker, walls and furniture, Boy Scouts, whatever) and I’m grateful for that. But for long distances or in situations where I’d have to be on my feet for any length of time I use a wheelchair or a scooter.

 If I have a companion who is willing to push when I tire, I take a manual wheelchair on outings. At least with a manual chair I am getting some exercise and, in addition, I feel more dignified. For some reason, the Durable Medical Equipment industry thinks disabled people (many of whom are senor citizens) need bright and cheery mobility aids and the standard colors for small travel scooters are red or blue. Sometimes you can find black or silver, but not often. I’ve dreaded the day I have to appear at a business meeting looking like a cross between Harpo Marx and a Shriner clown on my bright blue travel scooter.

 Fortunately that day may never come because the Office of Vocational Rehabilitation provided me with a businesslike black power wheelchair for work. I’m very grateful for it. Looked at from afar the chair seems massive, especially compared with a travel scooter or a manual wheelchair. The chair is so well fitted to me, however, that when seated in it I lose awareness of its size. It just seems like a part of me—the part that moves me easily from place to place. It’s a mid-wheel drive chair with the largest wheels directly under my seated weight. The casters are in the rear where I can’t see them. It’s kind of like having a numb rear end sticking out 2 feet behind me, a steatopygous powerchair.

 I work in an office where a large quantity of material is designed and printed. I work with an able-bodied colleague who favors expedience over spatial organization, who leaps and steps nimbly over obstacles, and whose mantra is “later.”  For instance, if I say, “When can we move that pile of boxes?”  The answer is “Later.” If I say, “That stack of labels is going to make for difficulties, may I put it elsewhere?” The response is bound to be, “Later.”

 During the first 2 years using the power wheelchair I tried patiently educating my colleague and the others with whom I work about the spatial considerations such a chair requires. I wanted to be able to back away from my desk, move about the office, get through doorways, and enter and exit the facilities without having to ask people to make way for me each and every time.

 Looked at it from my perspective, imagine that in order to get to the restroom, instead of proceeding circumspectly along, you had to politely ask people to move piles of things or risk them being run over. And then you had to wait for them to do so. While you waited, you battled your incontinent bladder. And you’d lost the privacy people take for granted when they quietly go to the restroom without such fanfare. But people don’t really understand. My colleague still seemed irritated when I interrupted her work. She was unable to incorporate the notion that considerate placement of stacks today avoids interruption tomorrow. While I was grateful when people stopped what they were doing and came to my aid, I was feeling pretty bad about myself as an ungainly and unattractive office Behemoth

 Someone I know had a husband with whom she argued incessantly over money. One day she found a beautiful easy chair she wanted to buy. She told him about it. He denied they needed such a chair. She tried her best to convince him. They ended up having a tremendous fight. He stormed upstairs and she went out on the porch. “Both of us are feeling miserable.” She reflected, “but if I buy that chair only one of us will feel miserable, and it won’t be me.” For her that was an emancipating epiphany.

 I’ll be forever grateful that she shared that story with me because it inspired my next move at work. I was tired of having to ask permission to be able to move around. I no longer wanted to apologize for my size and shape or for the inconvenience of my existence. After 2 years, the remembrance of a power wheelchair in the office ought not require extra effort.

 A few weeks ago I began simply moving from one place to another. I backed away from my desk. BAM! “Oops!” I said cheerfully, “Sorry about that box getting dented.” I turned the chair toward the door and a stack of items went flying. “Oh, gee!” I said, “I guess you didn’t leave enough room.” I rolled through the door and ran over a pile of uniforms left lying on the floor directly in my path (where an able-bodied person would have been able to step over them). I continued on my way without a word.

Last week as I began to back away from my desk my colleague jumped up and said, “Let me get that box out of your way!”  Eventually she may learn to avoid having to interrupt herself. As for me, I’m overcoming my tendency to apologize for being what I am, and I’ve learned that sometimes actions do speak louder than words. I’m grateful for the lesson. Happy Thanksgiving from Cripple Creek!