>I took possession of my very own wheelchair ten days ago. I’ve been working hard ever since. I used a scooter most of my waking hours for ten years. With a wheelchair, EVERYTHING is different.
Years ago, I remember watching my toddler niece moving through her world. She was discovering the basics of moving with an upright body: When you’re standing on something, you can’t pick it up. When you climb over something, you swing one leg over first, get your balance on the new side and then swing the other leg over. She was a problem-solving critter. Everything was experimenting; everything was learning.
That has been my world for the last ten days. I need to discover and remember new procedures for moving to and from the toilet, the shower, the bed and the driver’s seat. I need to learn how to maneuver the wheelchair down ramps and narrow passages and through doors. I am conducting a constant time-and-motion study.
OCD, obsessive-compulsive disorder, is popular in the media these days. I believe most of what we label mental health disorders are human tendencies carried to an extreme. We are all on an obsessive-compulsive continuum. It’s a disorder when it gets in the way of living our lives. My OC behavior is actually working in my favor lately as I try to wrangle my body and wheelchair through the world.
So far, the transfer with which I’ve made the most progress is the one to and from the toilet in my home bathroom. It goes something like this:
- Position wheelchair facing the grab bar, but at a slight angle.
- Turn chair power off.
- Unclasp seat belt and move belts to sides of seat.
- Use hands to move right foot on to left foot rest.
- Swing away right foot rest.
- Use hands to move feet off left foot rest.
- Swing away left foot rest.
- Shift left hip forward in chair until left leg has an extensor spasm.
- Lean body forward to keep spasm from traveling into torso.
- Grip grab bar with left hand.
- Position left foot about five inches from wall.
- Push with right hand against wheelchair arm rest while pulling grab bar with left hand and maintaining spasm in left leg.
- Swing body into standing position with weight on left leg.
- Hold grab bar with left hand.
- Use right hand to pull up dress.
- Hold dress hem in teeth.
- Use right hand to lower underwear.
- Move right hand to left wheelchair arm.
- Release left leg spasm.
- Lower bottom to toilet, pulling on grab bar and wheelchair arm to avoid torso spasm.
That completes that process. I’ll spare you the next one, which is the catheterizing procedure.
Steps 12, 13 and 19 are the trickiest ones, as I try to create, sustain and release a spasm. A spasm is, after all, “a sudden, involuntary, muscular contraction or movement.” Involuntary is “done without conscious control.” I’m dealing, by definition, with the impossible.
Then there are steps 15 and 17, where my increasingly weak and floppy right hand sometimes loses its grip, necessitating a “do-over” for which my pitiful left leg may not give me time.
Let’s not think about the number of times I’ve tried to stand without unclipping the seat belt.
Some day—in a month or six—I will have figured out how to do all these new movements and won’t have to think so hard or retry so many times. Until then, I have to make my peace with a background buzz of mental and physical exhaustion.