As I am loaded on to the air ambulance Feb.7th that will transport me from Englehart Hospital to theTimmins General Hospital intensive care unit after a life-threatening allergy attack, scenes from my life of over 13 years of trying to get the government and medical system to understand the help I need, loom in my mind like a surreal nightmare. I think of how but for caring friends supporting the costs of my medical treatments I would have died many years ago.
I relive the sadness that my wife and I have not had the opportunity to celebrate our eighth wedding anniversary. I haven’t even had my birthday celebration. That is our life.
Tears come as I think of how if we had received the help we needed from the government that perhaps I would not be struggling to keep alive in that air ambulance.
I am alone when I give myself my first EPI pen shaking uncontrollably. My wife, Karen, is away because of severe caregiver burnout. The cost of this for her to stay at a local motel is provided through a loving Christian brother.
I had reached out for help so many times with political officials to either get no response or that it is only their job to make sure provincial regulations are enforced. I am expected to understand. I am told by the Exceptional Access Committee of the Ontario Ministry of Health and Long-Term Care excuse upon excuse, reason after reason why they cannot help. But as I am fighting for my life I can’t understand. All I see is the tears in my darling’s eyes. All I feel is this crushing sadness.I see no hope. Maybe, that will come tomorrow.
Injustice anywhere is a threat to justice everywhere.” – Rev. Dr. Martin Luther King Jr. In a rare departure for me I am going to address a personal experience of injustice I am experiencing. I am doing so because I feel that if I am to encourage and even challenge you how we can build better communities and a better world, I have to first have the courage to look within myself and point out how I am addressing injustice wherever I see it. This is why I chose a quote from that great champion of injustice, who was willing to go to jail, have his reputation attacked and ultimately give his life because he believed in something that I feel has sadly been mired in watered down justice, a seething cancer of don’t rock the boat, don’t make waves, you little poor people because you have no power. Accept what limited help is given for your medications and be grateful. But when I have to look into the eyes of a deep penetrating heartache,sorrowfulness of my wife, Karen, because the government of Kathleen Wynne in Ontario still after over 13 years refuses to give me the help I need for the cost of treatments for my extremely rare auto immune condition of systemic mastocytosis, I have to ask, Where is the justice in that? Where is the compassion in that? Where is the logic in not giving people the help they need resulting in you the taxpayer paying more in health care costs, not less?
Approximately three years ago I ended up at various hospitals for a combined total of six weeks from mast (immune & systemic) attacks, which were complicated by a combination of a bacterial and viral flu. At that time the government had stopped my coverage of Singulair, a medication used in the treatment of asthma. Their contention was that those who could use a spacer for their inhalers didn’t need Singulair even though my lung function tests had proven my breathing improved on the Singulair. On the limited funds of Ontario Disability I explained to an allergist that my wife and I could not afford the Singulair. He looked horrified. He said, “Without the Singulair expect more of the same of these terrifying reactions and even worse.”
In my opinion, the denial of Singulair resulted in the Ontario taxpayer paying out approximately $42,000 for me to be hospitalized based on an average of $1,000 a day. That was the figure given to me at the time by a nursing co-ordinator, who wanted to remind me in no uncertain terms that in spite of the doctor in charge of my care saying I needed to be there, I was made to feel like I was one of those second class people because I am on disability. Why am I on it? Because the system that should have dug below the surface, should have not dismissed me as merely making up my illnesses, failed me. It broke down. It got it wrong and for that I will pay the rest of whatever life is left that I have with a disease that is incurable.
Yes, those who know me in my faith, know I believe in the power of God to heal. Yet, I also know that God is also willing to sacrifice others to make a larger point – that we are called to be a people of compassion. I do believe that if it is the Lord’s will He will sacrifice any one of us who believe in Him to benefit a far larger group of people, for His larger Kingdom purpose.
It’s not that I think I am anyone special. I wrestle with that daily battle we all struggle with doing the right thing. I don’t know in all frank honesty if anything I say at this point will move anyone to do anything. But what I do know is that regardless of the criticism I might receive at the end of the day when I look into my Father’s eyes, I have to say I at least tried to do the right thing.
I once had a $250 a month special diet allowance. This allowed me to get Ensure Plus because of malabsorption of vitamins and minerals in my food.When the Ontario Coalition Against Poverty said doctors would be willing to lie to get their patients the special diet allowance, the then McGuinty government to address the public outcry of fraud reduced the conditions that would qualify for the special diet allowance. Yours truly was one of the innocent ones that got swept up with the guilty. My special diet allowance was reduced to $86 a month. My wife and I could no longer afford the Ensure.
I fast forward to the events of the last two weeks. One week ago likely from protracted illness with streptococcal pneumonia, flu and battling a sinus infection going into an intolerable fifth month, I have both a severe asthma and mast (immune & systemic) attack in my doctor’s office. I end up being kept overnight for observation.
Last Friday, February 6th I have a mast (immune & systemic) cell attack after an exposure to chemicals and a man smoking a cigarette outside our local Valu Mart grocery store in Englehart, a small town which is about a two and a half hour drive north of North Bay, Ontario. I use the whole kitchen sink of medications to avoid going to the Englehart ER. Karen freezes whenever the paramedics arrive.With everything that keeps happening to Karen and I we haven’t even had the opportunity to celebrate our eighth wedding anniversary nor my birthday. I think there’s something intrinsically wrong about that, don’t you?
I will fight this mast cell attack for almost 24 hours. I wake up at 5:00 a.m. Saturday February 7th with severe difficulty breathing. None of the antihistamines or inhalers I take stop the mast cell attack. More and more mast cells form. Karen calls it allergy on steroids. I call it a neighbourhood block party out of control. According to the web site for the Mastocytosis Society of Canada’s web site we all need mast cells to survive. They are in your tissues, organs and all throughout your body. They form part of your immune system. With a mast cell attack it is too much of a good thing as these mast cells become malformed. The toxic contents of these mast cells are released throughout the body, which can result in such things happening as anaphylactic shock, heart attack or stroke. Some people with more advanced mastocytosis develop cancers such as mast cell leukemia.
When none of the measures were working I was left with no choice but to take an EPI pen. Karen was away because of extreme caregiver burnout. I insisted on it. I was all alone.My tongue had become swollen and I was going into involuntary shaking. Ask around with those who have experienced anaphylaxis and lived to tell about it. Your throat closes up. You feel like you are suffocating to death. Minutes can mean the difference between life and death.
I am thankful for the tremendous effort put in by the paramedics and the whole Englehart ER team and the Timmins General Hospital critical care unit to save my life. A second EPI pen is required. I am airlifted to Timmins General Hospital for closer monitoring and treatment. I am told by an I.C.U. doctor that it came close to being needed to be intubated. That would have been my ninth intubation. The I.C.U. doctor said, “Mr. Osborne, you were very lucky. You came close to us having to intubate you.” While I understand why the doctor said this, luck had nothing to do with it. God is just not finished with me yet.
I reflect on what I expressed to the ER doctor as it became more difficult to breathe. “I am a brave man, but I’m really scared.” He allowed me to hold his hand. He said he was going to do everything he could to help. I think he was one of those many unsung heroes. In fact, I thought everyone on that Englehart ER team was a hero — an ordinary person doing an ordinary thing in an extraordinary way .
I would like you to also take away this thought – the one in which I use the quote from Rev. Dr. Martin Luther King Jr. “Injustice anywhere is a threat to justice everywhere.”
I think if Rev. Dr. Martin Luther King Jr. was alive today he would see in many ways we have become a more just society. But I also think there would be something else he would say. We become responsible collectively as a society when we as individuals stay silent about the things that matter.
If I have encouraged one person to no longer stay silent about the things that matter, the effort expended in opening my heart to you this way will have been worthwhile.
And I really do mean that.
Kevin Osborne, B.Th. with honours, D.D., D. Sc., Diplomate in Creative Ministry, is training to be a Christian psychotherapist through St. James the Elder Theological Seminary. He will be a Master of Divinity student at Trinity College in the University of Toronto. He will soon be opening a Christian counselling practice called You Can Hope Again with his wife, Karen, who is an M. Div. student at Trinity College. He is a member of The Word Guild, a Christian writer’s group in Canada. We are available to go where God sends us to do His will preaching, teaching, singing, giving marriage enrichment seminars or however needed. You can reach me at my email address firstname.lastname@example.org
May the Lord pour His richest blessings into every area of your life!