I’ve aspired to many things in my life, however; being an obstacle wasn’t one of them.
And yet, here I am, the woman with wheels, slowing down the flow of traffic. (What’s the opposite of bionic?) I always try to pack my sense of humour when I venture out, knowing how frustrating it can be to get behind a slow-moving “vehicle”.
Part of the ME/CFS experience is difficulty with balance and the muscular system. A year ago, I stumbled frequently, had difficulty holding onto objects, and at times, was unable to walk at all depending on how much exertion I had experienced within a forty-eight hour period. I had to rely on a walker to get around the house.
Today, with the exception of “crashes”, I can manage in the house without support, and use the walker for short distances outside. By short distances, I mean I can walk the length of five houses on our street – beyond that I begin to experience a shut down in my leg muscles.
Whereas last year, I could not tolerate being out of bed for longer than more than short periods (an hour or less), today I can go two hours without regressing. Progress which thrills me!
The difference for me was in the realization that it is the effort involved in walking that drains me, and therefore, by using a wheelchair, my limited energy takes me further.
Recently, I imposed on a friend to take me to a local mall so that I could buy some new slacks. My destination was right across from the elevators which could be accessed from the underground parking area. We parked in the designated handicapped parking and I pushed my wheelchair up the short ramp to save my friend’s knees, which I knew were a problem. It was my “exercise”. From there, she pushed me for the duration of the outing. It was my first time in a mall in two years, and I was excited.
A passerby, witnessing my transition, remarked: “Better get in the chair before someone catches you on camera.”
The remark rattled me. In hindsight, there are many comebacks I might have offered, but none to alter the sheer ignorance and cruelty of this woman’s comment.
Why are we so quick to judgment and to think negatively about the actions of another?
“People in wheelchairs or scooters make me nervous,” a friend confessed in way of explanation.
“Some people milk the system,” said another.
I’m not saying this woman is the norm, the majority of people are polite, smile back, and patiently hold doors. I just don’t understand the need to be mean.
My husband has had similar experiences. As a result of multiple injuries and surgeries, his knees are a source of constant pain, and his legs are severely bowed (one a different length than the other.) With each step he takes he experiences hot searing stabs, and so he has been prescribed a handicap parking pass. Twice he has been confronted by men who claimed he was illegally parked.
We know how frustrating it is to arrive at our planned destination and not find an available handicapped spot. For me, it can determine whether or not I am able to complete my intended journey. For my husband, it means compounded stress on his legs – and we both rely on those legs to get us through each day.
As I stated at the beginning of this post: I never aspired to be where I am today, but I am trying to make the best of it.
All I ask is for a little respect – or to heed what our mothers taught us: If you can’t say anything nice, don’t say anything at all.
Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.