“OMG, I broke you!,” words said to my friend, Kathy, as we sat in her jeep in my garage, about to head off to the Stanley Health Center. The vehicle is high and has a step. I cannot efficiently lift my feet, so I would turn around and position myself against the side of the seat and Kathy would hold up both legs while I pulled myself in. Then it happened! She screamed! In just a split second, Kathy injured her back. She actually asked me if I heard the crack. I did not. I was terrified and we both almost started to cry. It was a mess! Mess be damned we carried on to the Center.
Once there, I slithered out of the passenger seat and grabbed my crutches and then noticed that I could not move my feet! No heel-toe lift. Nothing! I had struggled in the garage at home just moments earlier. For several days, I hadn’t been feeling ‘right’, having experienced a sharp pain at the base of my skull. It didn’t last long, but long enough for me to wonder about it. I was actually going to put the TENS pads on it for a bit of therapy. Never got around to it and carried on with my day.
At the clinic, to find that my mobility was messed up, was concerning. Two nurses saw me and came out with a wheelchair. One of them, Nancy, had to resist the urge to ‘help’ me. Her hands were outstretched. Thanks for the welcomed boost into the car, Nancy.
Here’s why helping is not always a good thing — I have spent decades fine-tuning mechanisms that get me from point A to B, whether inside or outside my home. At home, growing up, Dad would always remind my younger, very tall brother to pull his feet in as I passed by him in the TV room, usually free walking; wobbly walking without my crutches. Occasionally, I had to alter my walking/stepping behaviour to accommodate extra bodies in the house with the likelihood that, at any moment, one of them might move, throwing my balance into chaos. A ‘helpful’ person who puts their hands on me unawares, startles me. I could twist. I could fracture a hip, or even my spine, trying to ‘save’ myself from a perceived threat to my upright mobility and safety; a harm created by someone interfering with how I move. That ‘save’ could potentially land me in the hospital where I’d be at even greater risk with even more ‘manhandling’. Scary proposition! How would you feel in the circumstance? Think!
It turns out that I experienced a TIA and the residual effect of that sharp pain in my head is that I can no longer lift my feet to heel-toe step/walk; at present, the ability to use my crutches is gone. I’m in rest and recovery mode.
I am actually terrified to go to hospital for anything. Far too many bedside caregivers do not listen; do not hear. That is unacceptable. Full stop! How I move myself, seat myself, plan to stand up and step are always issues that I point out to staff only I must be responsible for. Though well meaning, one wrong move from them trying to assist, could cause me to lose the privilege of continued living in my home and being able to care for my dogs. That, people, what a caregiver not thinking about me as a person could cost me. Mentally, that is not a good place to be.
Across the province and across the country, in each and every hospital and facility that provides in-patient care, there must be standards in place specific to those with challenges to mobility whether since birth or late onset. Many of us live independent lives, are home owners, have jobs and contribute to the economy. Our disabilities must not define us as people, but so many perceive us as persons in need of help and care and they must do their part. Okay, if you must, fine, but ask first! And if your help is turned down, do not view that as a slight. View it as my expression of independence and a right to be!
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese and Mr. Malcolm, the boisterous Havanese. She can be reached via email at Carla MacInnis Rockwell
Best wishes to you, Carla. Your coping skills are extraordinarily impressive.
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