Thank you Prime Minister Stephen Harper! Thank you Rick Hansen! Thank you Tony Clement and Steven Fletcher! Thank you, thank you and thank you. Finally someone gets it!
A wise person once said that to know where you’re going, you have to look at where you’ve been. Spinal cord injuries were only endured during the Second World War when better antibiotics and medical care meant secondary complications of paralysis could become survivable. Since that time, people afflicted with paralysis were in a homeostatic state for more than 50 years. Lumped with all disabled people and considered invalids or shut-ins until the ’60s, we have come a long way from institutions and forced sterilization to access to medical care and quality of life issues and to the final holy grail — the cure. You’re right Celine, these are exciting times.
Myself, I was 12 years old when I became paralyzed from the waist down in the summer of 1985 due to Transverse Myelitis. It had the same effect as if I’d broken my back in an accident leaving behind damaged Myelin sheaths that resembled swiss cheese. Damaged myelin meant no signals could pass, and sensation and muscle usage lost forever.
With popular usage of the Internet, it has become clear in the 21st century that spinal cord injury is reversible by several different possible avenues. The most promising are injury bridges across the spinal cord and growth factors that scientists at this very minute are working on all over the world. Technology may trump medical advances. I watch with anticipation while I continue surviving my life.
There are secondary complications that threaten those with paralysis. Blood clots are common. Low bone density and fractures occur.
The fatigue is undeniable. Muscle Atrophy can lead to pressure sores, where bones become close to the skin. Pressure sores threaten to take lives with severe infections. Diabetes and cardiac illness can occur given the very nature of paralysis and the sedentary lifestyle it provides. There is no control over bladder, bowel or sexual function. Not to mention I had to pay $4,000 more than every other condo owner in my building so the architect could alter his drawings and I could finally enjoy home ownership.
I wasn’t eligible for insurance, whether life or mortgage. I’m only able to buy certain cars that can fit a folded up chair behind the driver’s seat — this left me with the Saturn Ion, reluctantly leaving my beloved Ford behind. Deemed too independent by local home care, I’ve been buying my own medical dressings for pressure sores on and off for several years.
There is no financial aid for housing, transportation or medical supplies as I work full time; rotating shift work at that.
My biggest fear as of late has been dying of severe infection due to non-healing pressure wounds on my feet. I am now 34 years of age but they have been there since I was 17. I wouldn’t even feel what’s coming and imagine I would have very little warning. Three years ago found me carrying around a portable IV and receiving antibiotics intravenously for most of the year, while I continued to work.
All my doctor and myself have to go on is how the wound looks and what lab test results show. I cannot tell him how it hurts or is feeling. I have sought out at least five doctors who all advised to amputate.
Unbelievably, the usual response was, “Well, you’re not using them?” I flat out refuse. It’s an archaic medical response that I won’t entertain regardless of how many years of medical education are staring me in the face.
So now I feel I’m in a race and I hope I’m here long enough to see the outcome. It breaks my heart every time I see a child in a wheelchair who I know is paralyzed and I hope they don’t spend the almost 22 years that I have from this seated position.
It is hopeful for me to see this $30 million that Prime Minister Harper et al recently announced will go to a spinal cord injury research and Rehabilitation network to improve the lives of those suffering paralysis. Last year, the B.C. premier gave the Rick Hansen Foundation $15 million and I sent a letter to our Liberal premier asking why Ontario couldn’t do the same.
My reply was one that curtseyed to accessibility and inclusion — oh that old chestnut. The Liberal premier went on to state in his letter that Ontario was working towards being accessible to all by the year 2029 which doesn’t fair thee well since I’ll be retiring from my full-time job (but more than likely dead) by the year 2026. If there is still a need for wheelchairs for the paralyzed by that time, I’m going to be very concerned about society as a whole. Another government redundancy.
Overnight, it has suddenly become very clear who I’ll be voting for, and encouraging family, friends and co-workers to vote for, in the next federal election. A great start prime minister; you definitely have my support.
Special to The Windsor Star
Jennifer Spence is an emergency services dispatcher who lives in Windsor.