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MY FIRST WHEELCHAIR EXPERIENCE
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What's
it like to be in a wheelchair? It didn't take long for me to find out what what sort of disenchanting experiences
would lay ahead. This was the first one.
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In
August 2008, my worldly belongings were on a truck somewhere between Alberta and Ontario, and I headed to the airport
in Calgary. I had been using a rental wheelchair for 5 days, while packing my things to move. Being in a wheelchair
in a public place for the first time was unnerving, mostly because of the sad way people looked at me. I just tried
not to make eye contact with anyone. But when I got to security, eye contact became necessary.
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My
companion pushed me to security. Since I couldn't walk through the metal detector, there's a separate line, where
an attendant uses a hand scanner. Having to go in a line designated for the disabled felt odd, to say the least.
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In
the "special" line, we arrived at the conveyor to put our carry-on in the bins. There was nobody else
waiting. What happened next didn't have an immediate impact but gave me cause for dismay for a long time afterward.
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Boarding
pass in hand, I placed my carry-on items in the bin. From the opposite side of the conveyor, the security attendant
looked at me, sitting in the wheelchair. We made eye contact but she looked away without speaking. Instead, she
looked at my companion behind me and asked, "Can
she stand up?"
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I'm
not sure whether this security attendant thought I was unable to hear, or incapable of understanding and answering
the question myself. I suppose she was making the assumption that anyone using a wheelchair must have diminished
mental capacity.
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When
I thought about this later, the sense of indignity she had imposed by not addressing me directly was infuriating.
I will never forget it.
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Eventually,
my anger waned and I just became disheartened by the incident.
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Being
in a wheelchair is hard. Being treated like that is harder.
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My Story
Paralyzed, Twice
Misdiagnosis
My life-changing journey began with some tingling and numbness in my left leg, in fall 2007. After 2 doctor visits
and an MRI, I was misdiagnosed by my family doctor, and treated for a bulging disc. Over a period of months, I
pursued several therapies for that but my decline slowly continued. Walking was hard, even with crutches.
The numbness, tingling and weakness got worse and in summer 2008, I went from walking to needing a wheelchair over
a period of 9 weeks. Just getting out of bed, was an enormous struggle. I was living alone and couldn't look after
my own basic needs, so relied on friends for help. They brought food, did laundry, loaded the dishwasher, and did
other things that had become impossible to do on my own. My legs had lost significant strength and I couldn't stand
up at all.
Prior to this debilitating experience, I was a 40-something, strong, active, entrepreneurial, healthy woman. People
close to me would describe the person they knew as determined, resourceful and creative, with a fiercely independent
streak. I'm still 40-something. The jury is still out on the rest.
Moving
My health in rapid decline, I quickly moved from Alberta to Ontario to be looked after by family and to pursue
better medical care. A lot of my belongings ended up in dumpsters and second hand shops, and the rest was hastily
packed into boxes that would be going to storage. It was a tremendously stressful few weeks, trying to tackle moving
tasks while in distress and in shock from what was happening to me.
Hospitalization
Upon arrival in Ontario, I was immediately admitted to hospital in Toronto. Between summer 2008 and spring 2009,
I spent 6 months in a wheelchair, and four months in hospitals. Full investigation was done and I was diagnosed
with Transverse Myelitis. It's an autoimmune disease that damages the sheathing around nerves. It has caused me
severe problems with sensation, strength, balance and coordination. Treatments included intravenous steroids, plasmapheresis,
occupational therapy and physiotherapy. My journey has covered a broad spectrum of health care experiences, from
outstanding to horrifying. That's another whole story in itself. |
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Disability
The 6 month span that I spent in a wheelchair was a journey from acute illness, to partial recovery, relapse, partial
recovery again, and then months of daily rehabilitation. I've tackled physical, mental and emotional hurdles that
cannot be fully described. Anger, frustration, confusion and fear crept in and out. At one point my paralysis was
so severe that I had to be helped to roll over in bed at night, and my calves were covered in bruises from being
moved by hand. |
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Rehabilitation
At the start of the rehabilitation phase, my condition was, to me, unbearable. Still moving my legs by lifting
them from one position to another, exercises started with building strength. My leg muscles and skin were sagging
and neuropathic pain increased with activity. Gradually, I learned to stand and sit down again, then stand and
balance. Two therapists held onto me as I took my first steps in January 2009. After 10 weeks of daily exercise
and amazing training by my fantastic physiotherapist, I got up out of the power wheelchair and have been on my
feet in one manner or another, every day since.
It's been a year since my diagnosis, and doctors say the prognosis is uncertain. Neurological diseases are very
unpredictable. I go to a pool for hydrotherapy 3 days a week, and still do regular physiotherapy. Too much medication
and daily pain have been the routine, but I now get around on my feet using a rolling walker and occasionally a
cane in small spaces, when I'm feeling strong. I fatigue quickly and still have significant pain and numbness.
I love to go barefoot and feel the ground on the soles of my feet. I don't feel anything when I wear shoes.
So yeah, walking is hard. And when walking is hard, a lot of other things are hard too.
Moving On
While in the rehab hospital I met some really special people undergoing treatment for spinal cord injuries. Most
were there due to accidents that suddenly changed their lives. I lived with men and women whose life plans have
been interrupted, watching their daily efforts to recover. For some that means getting on their feet and for others,
lifting a spoon or moving their arms enough to hug their children. If you met these people, if you got to know
them and the work it takes to regain some mobility, you would understand what "walking is hard" really
means.
This publicity effort is for them, (Michael, Ron, Darryl, Rich, Errol, Chris, Donna, Dave, George, Gavin, Garrett,
Wally) for the friendship and inspiration they provided me, and for every person who is carrying on their life
with the hope of walking again. |
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