Friday, April 25, 2008

The Real Wheels: When OCD Comes in Handy

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:
  1. Position wheelchair facing the grab bar, but at a slight angle.
  2. Turn chair power off.
  3. Unclasp seat belt and move belts to sides of seat.
  4. Use hands to move right foot on to left foot rest.
  5. Swing away right foot rest.
  6. Use hands to move feet off left foot rest.
  7. Swing away left foot rest.
  8. Shift left hip forward in chair until left leg has an extensor spasm.
  9. Lean body forward to keep spasm from traveling into torso.
  10. Grip grab bar with left hand.
  11. Position left foot about five inches from wall.
  12. Push with right hand against wheelchair arm rest while  pulling grab bar with left hand and maintaining spasm in left leg.
  13. Swing body into standing position with weight on left leg.
  14. Hold grab bar with left hand.
  15. Use right hand to pull up dress.
  16. Hold dress hem in teeth.
  17. Use right hand to lower underwear.
  18. Move right hand to left wheelchair arm.
  19. Release left leg spasm.
  20. 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.  

Tuesday, April 8, 2008

Road Trip Report

Two days ago we returned from a trip to Walt Disney World.  From our house to our hotel was 1.565 miles and Alexis had a week for her spring break.  We left Friday afternoon, spent two nights in transit and arrived on Sunday.  A week later, we did it in reverse.

I'm glad we went, but it was a hard trip for me.  We last visit WDW five years ago when I was able to transfer from my scooter, often without help.  This time I basically needed to be lifted for every transfer.  I was just getting over the cold/flu from hell and that made me weaker and sadder.

We asked for accessible hotel rooms and got them all but one night, but what that means varies wildly.  The best stop gave us lots of room between furniture, grab bars near the toilet, a roll-in shower and a lowered sink in the kitchenette area.  The least convenient accessible room just had some grab bars in a fairly small bathroom with tub and no shower stool.  

Disney does a great job of serving people with disabilities and we also had a good book, PassPorter's Open Mouse.  Disney makes their buildings pretty accessible, provides information about the accessibility of rides (sometimes you can stay in your wheelchair, sometimes you have to transfer to a standard wheelchair, sometimes you have tø transfer to a ride vehicle, etc.)  They have special seating areas for performances and parades that provide relief from the typical experience of using a wheelchair in a crowd--what I (inelegantly) call "the butt show."  They also train their staff ("cast members") to be helpful and friendly. Passporter's provides detailed info covering a good range of disabilities, including autism and ADHD.

I didn't attempt any rides this visit and that reality was a bit difficult for both me and Alexis.   We have fond memories of riding Test Track twice in a row because a kind cast member, having seen how difficult the transfer was for me. suggested we go around again.

Happily, Disney has a good amount of "companion rest rooms," where Ralph could help me transfer.  Most states have them in rest stops, too, which made the car trip easier.  If everybody would stop installing toilet paper dispensers right above the grab bar, it would be even better.  (It's so common it must not be part of the ADA.  It would be great to add it but, last I looked, we are playing defense.)

What with needing help in the bathroom and not going on rides, it was easy for the "I'm-a-burden" monster and its sibling to roar loudly.  I kept thinking (and sometimes saying), "I should have stayed home."  (But, as I'm not independent, we would have had to hire help or impose on friends and relatives, which gives that monster even more to say.)

My favorite parts of the trip were the Disney fireworks shows and riding through Tennessee. One of the best things about humans is our capacity to appreciate and create beauty. and surprise.  Disney increases both beauty and surprise by adding lasers. water, fire and good stories to the shows.  Tennessee's Smokey mountains surrounded us with green pines and purple redbud trees.  Rust-colored rock faces beside the road opened for small waterfalls. Beautiful and elemental.

A coworker took her four year-old to Florida and when we asked what his favorite part was, he said, "coming home."  I was delighted to return home to a bathroom I can often manage on my own.  That's part of travel, isn't it?  Appreciating what you find when you get home.