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Millions of Canadians watched the four federal leaders debate the issues that affect all Canadians. My wife Karen and I thought there were some moments of excitement such as Stephen Harper’s admission that we are in fact in a recession. What we are both disappointed in is that the issue of health care was only given a passing reference by all of the leaders except Elizabeth May of the Green Party. Before you say this editorial comes from a member of the Green Party neither Karen or I are members.
To be fair to Maclean’s and the leaders the debate did not deal with the issue of health care. It should have. According to Global TV News by the end of 2013 our health care bill was 211 billion dollars. 1 The Canadian Institute for Health Information (CIHI) on their web site says that by the end of 2014 health care costs were expected to exceed 214.9 billion dollars, $6,045 per person.2
According to the Canadian Association for Rare Disorders (CORD) there are approximately 3,000,000 Canadians with rare disorders. 3 According to Statistics Canada as of July 1, 2014 Canada’s population was 35,540,400. 4 That means those with rare disorders as of 2014 represented 1 in 11.84 people. Rounding that out about 1 in 12 Canadians have a rare disorder. That’s a huge part of the population to ignore. This reminds me in World Geography in high school when I learned that the average Canadian family had 2.7 children. How they figure that a Canadian family has seven tenths of a person is humorous.
Elizabeth May said her party would fight for much better pharma care and health care for all Canadians. This is an issue close to our hearts. I have an extremely rare auto immune condition called mastocytosis. I have too many mast (immune & systemic) cells. I have had too many ER visits to count with anaphylactic attacks. I have been intubated nine times.Ketotifen fumerate,a life enabling medication costs over $500 a month. Why? It is because the federal government removed the subsidy for it. The only way I get it covered is through compassionate coverage from the drug manufacturer. On Ontario Disability we can’t afford this medication. Without it I will die from mast cell degranulation. This means I will keep producing more mast cells until my body can’t take it any longer. I could become unconscious and die from an anaphylactic attack that could not be stopped. I could stroke out or have a heart attack.
It turns out that I have a rare form of the disorder seen in only one in several million people. My allergy specialist says it is negative serum tryptase mastocytosis. In most people with mastocytosis this marker for the condition is highly elevated. In me it is normal or way below normal. This is why my mast cell attacks can go on for several days at a time instead of being over in several hours at most. The low level attacks keep building until bang! I have a life-threatening anaphylactic attack.
I share with you what happened during one of my intubations. A cleaner with limited English fails to read the clearly posted sign on my door: “Patient highly allergic to Virox.”My wife yells at the cleaner saying, “Get out now! My husband has a life-threatening allergy to Virox!” My doctor hearing Karen rushes in yelling as he waves his arms saying to the cleaner, “Get out! Get out now! This patient is highly allergic to Virox!”
At first the head of I.C.U. says I’ll be fine. He argues with my doctor who insists that I am worsening fast. The head of I.C.U. says that I will be okay. Then, my oxygen saturation (the amount of oxygen in my blood stream) dips to 77%. At that level health experts say there can be respiratory failure, permanent organ and brain damage. I am choking as phlegm keeps accumulating cutting off my breathing.
My doctor holds my hand as I start to slip into unconsciousness. He is pushing my stretcher as fast as he can. He says pressing into my hand with his, “Kevin, stay awake. I need you to stay awake. Keep fighting! Keep fighting!”
A member of the I.C.U. team uses scissors to cut into my hospital gown in order to put on the leads to monitor my heart. I am on oxygen. I’m heading into respiratory failure.
Before I am put to sleep I wonder if God will be merciful and let me die. No longer would I have to fight against the many injustices I have experienced. No longer would I have to keep justifying my very existence to the government. No longer would people, including one of my friends think that I am lazy saying with condemnation, “That’s why you don’t have a job. You’re lazy.” No longer would I have to decide with Karen on which medications we can afford and those I will have to do without. No longer would I have to see the tears and icy fear in Karen’s eyes having her husband cling to life by a thread. No longer would I have to see the sadness in Karen’s eyes as we have to go to a food bank one more time for three days of food.
Something deep inside me that I find mere human words fail to explain keeps me fighting to stay alive. There is a comforting presence I feel in the terror, in my battle between living and dying. In my faith concept I believe it is something far greater than the best-trained theologian could ever explain. My faith in God and the love for Karen and all those who love me, who think that I am not a waste of flesh, not a failure, not a piece of garbage, keep me here. I feel in ways many may never understand that Karen’s prayers, the prayers of my church, the many prayers of family and friends keep me here by God’s design.
After I can’t be woken up after three days a doctor goes to Karen saying, “Your husband’s heart is under a great deal of pressure. If he doesn’t wake up soon he will die.” We thank God that I did not die but I was in I.C.U. for several days afterwards. I am in the hospital for three weeks before being discharged.
I am still battling with the government and some medical professionals for the health care I need to get as well as possible. Thanks to supportive friends we can travel to Toronto for treatment at the Canadian College of Naturopathic Medicine. I maintain that with appropriate care my mastocytosis can be much more stable.
Karen and I are working towards having a counseling practice.There is a strong call to my heart to become a chaplain, minister and professor. We are thankful to God for dear and loving friends who have been helping us with practical necessities such as the cost of medications I need that the government doesn’t provide, which specialists say I need to stay alive.
My Canada is one where everyone regardless of their challenges be it physical, developmental or those with mental illness are given the opportunity to live the best quality of life possible. Canadians need the federal government to step up with greater access to postsecondary training and jobs where people can grow to their fullest potential. No one should have to sell their home to pay for their cancer treatments. No one should have to suffer the many indignities Karen and I have. There is only so much the strongest willed individual can withstand.
My grandfather fights in World War i as an infantry soldier at age 17 because he believes Canada is worth defending. He lies about his age to join up. He is so committed to the then Dominion of Canada that he is willing to die for it. He is exposed to mustard gas. My grandmother says he would wake up coughing every morning for what seems like an eternity. Yet, he still presses on. He becomes a boiler engineer at Mitchell’s apple manufacturing company in my home town of Thornbury studying by correspondence and driving for days to Toronto to write exams. Through the Great Depression he works at any job he can find. My grandfather works in the blazing heat of summer and in the chill of winter making horseshoes in his blacksmith’s shop. My mother tells me she would see the sweat dripping down his face. His shirt would be soaked with sweat from working in the fiery heat he needed to make horseshoes.He threshes hay for 50 cents a day all because he believes in a Canada where hard work and the determination to succeed are what any parent should do for his family.
I wonder what he would have to say about the health care we have in Canada. What would those who fought and died, those who suffered permanent disability have to say about the many medications and treatments that neither federal or provincial governments cover? Yes, we have free health care for hospitalizations and many medications, but many medications are not covered.
When I look out the window of our home in the small community of Ramore, northern Ontario, I see part of the Canada I love with the beauty of its tall trees and birds greeting me each morning with their singing.
In spite of my challenges in getting the health care I need I am still proud to say, “Je suis un Canadien.” I am a Canadian.
What are your thoughts about this issue? How can we have better health care in Canada? What do you think the federal leaders should be doing to address this issue?
These are some of my thoughts. I welcome receiving yours.
Karen Osborne B.A. Christian Clinical Counseling St. James the Elder Theological Seminary, graduate divinity student at Trinity College University of Toronto. Kevin Osborne, B. Th. Canada Christian College & Graduate School. B.A., M.A. Christian Clinical Counseling, postgraduate applied theology and counseling student St. James the Elder Theological Seminary, D.D., D. sc., Diplomate in Traumatology American Board of Traumatology Examiners of St. James the Elder Theological Seminary, Diplomate in Creative Ministry St. James the Elder Theological Seminary. Kevin Osborne is a member of The Word Guild, which is a Christian writer’s group that invites membership all around the world. Please go to https://thewordguild.com for further information.