Life in a wheelchair.

Dear neglected, overlooked, and ignored blog,

It’s been two weeks and two days since Liz and I made the fateful decision to have Vietnamese noodles for breakfast.  Maybe the idea was so crazy that I deserve the consequences. 

Anyway, we had been in Montreal for six days, attending the CMSC (Consortium of Multiple Sclerosis Centers) conference.  We both love Montreal so we stayed in town for two extra days to have some fun.  On Monday morning we decided we were hungry for Vietnamese pho for breakfast (neither of us really likes breakfast food) so, at 7 AM, after we packed our bags, we set out on foot to Chinatown to find the noodles we had eaten two days before. 

Maybe I’m too old to multitask, but, when I saw the first “noodle” sign, my foot slipped off the pavement and I tumbled into what had been a planter in the middle of the sidewalk. 

Ambulance to hospital, broken pelvis, pain like I’d never experienced (I broke my elbow and washed my kitchen floor before I would go to the ER.), two days in the hospital, trip home to Miami delayed until Thursday, and the last two weeks in a wheelchair.  You wouldn’t believe the effort it takes just to go to the bathroom.

Thank you, family: Liz spent an extra week with me, and my husband, who decided he doesn’t want to be a nurse when he grows up, took a week off.  Can’t decide what’s worse, the pain, inconveniencing everyone I love, or looking at my dirty floors.  Try as I might, I haven’t been able to figure out how to rig a vacuum to my wheelchair. 

In an earlier post, I wrote about my feelings when I realized that the lady in the wheelchair on the cruise ship was interested in the color of my lipstick.  Little did I know that I would be the lady in the wheelchair.

Life in a wheelchair really does turn you into a non person.  Last week we ran into someone we had seen and spoken to regularly.  He was walking his little dachshund and didn’t even talk to me.  He didn’t ask what had happened, and, when I turned to pet his dog, he told the dog to come around to the front of the chair so I could see him.  I wanted to say something, but I didn’t want to embarrass him, so I played the non person role.

When we went into the office at the park where we were staying (Life in our motor home was easier because I didn’t have that far to go and could support myself on my walker which I dubbed “the sidewinder” because it didn’t fit in the aisle.), the conversation turned to our Miami Heat.  Why did the guys in the office act so shocked when I joined their conversation?  I wanted to shout “I can’t walk but I can hear, and I can talk, and I still do like the Heat.”

And so, life has gone on.  I just chipped my nail polish and have to figure out how to get to the bathroom to fetch the polish remover, carry all the stuff with me, and polish my nails.  Yes, I really do care about the color of the lipstick and am still the same person who is obsessed with chipped nail polish.  I’d better not chip the polish on my toes because I can’t bend down to reach my feet.

What I wouldn’t do for a service dog.

Lipstick on a Cruise Ship

     “How could I have gotten so old without figuring out how to interact with people in wheelchairs?”  Sure, I had encountered people in wheelchairs and walking with walkers and on crutches, but I always kept my distance.
     What should I say?  How should I act? The answers had eluded me much as the appropriate dialogue when faced with a death.  My mother taught me to say “How do you do” when introduced to someone—I always felt stupid and wanted to say “Hi” or just “Hello”--but I learned to be as polite and refined as my mother insisted.
My mother never taught me what to say, or whether to say anything at all, to someone in a wheelchair.  I can only surmise that she didn’t know how to react either.
     I finally learned a lesson a few months ago while on a cruise.  It was one of those perfect days at sea that I had come to love when on cruises.  We didn’t have to disembark, to go through another store with diamonds, jewelry, watches, or just stuff, when the ship pulled into another port just like the last one and all those before. 
Sitting on the deck at a table in the shade near the pool and trying to ignore all the chaos around me (It was Thanksgiving week and there were lots of kids aboard.), I was reading something, I have no idea what, on my Kindle, and didn’t even notice the woman in her wheelchair who had pulled up near me.  She was very thin, could not sit without trembling and shaking, and was obviously very ill with what  I never did figure out. 
     I reached into my bag for a lipstick and, while putting it on by rote, as I had done thousands of times, the woman in the wheelchair said she really liked the color and asked what it was.  I had never taken the time to think about physically challenged people enjoying all the seemingly dumb things we do every day. 
Taken aback, but trying to be cordial, I looked at the lipstick, read the name of the color, and proceeded to tell her how much I liked it, had just discovered it at Walmart, and how much I wanted to buy more. (True to form with almost everything I like, it has since been discontinued.)  How, I wondered, could this woman even think about something as frivolous as lipstick?  I couldn’t figure out how she even applied it with her trembling hands.
     She then looked in her purse for her lipstick to show me the colors she liked.  Talking  about lipstick, I was able to forget how disabled my new friend was.  For the rest of the cruise, every time I ran into her, we were friendly and easygoing. 
     How many times, I kept thinking, had I looked right through or simply ignored a person in a wheelchair or leaning on a walker?  How awful each person must have felt when treated as a non-person.  How awful had I made each person feel?
     It was the casual encounter with the lady with the lipstick that changed my attitude. 
     By chance, very shortly thereafter, my daughter approached me with a tale of meeting a woman who trained service dogs for the handicapped and how, as a medical researcher, she was interested in conducting a study to prove the positive effects of service dogs on the quality of life of people with multiple sclerosis.
As we had done many times, we began our collaboration, intending to work together on the grant proposal she had been thinking about.  The project grew and grew and evolved into msbeyondmeds.com. 

Wheelchair Kamikaze talking about us

Marc is talking about us on Wheelchair Kamikaze.  Lots of readers.