I think most people are familiar with the story of David and Goliath, a story from the Book of Samuel in the Bible. David is a young shepherd boy with the Israelites and Goliath was a giant fierce warrior with the Philistines. For forty days Goliath came out twice a day and challenged the Israelites to sent out a single warrior to do battle with him. Finally David accepts the challenge and faces off against Goliath. David, the Shepherd boy kills him with a single stone from his slingshot.
David and Goliath is so famous that it now refers to just about any story where the underdog defeats the heavily favoured, normally bigger and more powerful opponent. Everybody loves an underdog.
I am quite literally, and figuratively David and I am fighting my own Goliath, the only difference is that my Goliath is going to be victorious over me. No matter how hard I fight, I know the fight is lost before I start, but I fight anyways, I am fighting for my life. You see my Goliath is ALS, Amyotrophic Lateral Sclerosis, a rare incurable neurological disease. It is characterized as a fatal type of motor neurone disease, it is the progressive degeneration of nerve cells in the brain and the spinal cord. To put it simply, the messages being sent from the brain are no longer reaching the muscles that they were being sent to. Slowly parts of your body just stop working, you look at your leg or hand willing it to do something, and it just ignores you like an insolent child. As well as slowly robbing you of the ability to function as an independent person, it also slowly keeps taking more and more of your dignity away from you, as time goes on the list of humiliating incidents gets longer.
ALS is a pretty rare disease, if you get it it is like you won as lottery, just a lottery that you, nor anyone else wants to win. It is estimated that 3,000 Canadians are living with ALS every year, 1,000 die every year, and 1,000 new cases are diagnosed. Ten percent of people with ALS have Familial ALS, for the rest there is no how or why explanation for it. There is no cure for ALS, just some very expensive medications that you are told slow the progression of the disease. People like to ask are the medications working? I don’t know, I have nothing to compare it with. Would the disease be progressing faster if I didn’t take them, that’s what my Neurologist tells me. All I know is that I am getting over three hundred thousand dollars worth of medication a year, thanks to my Benefit Plan and Government Subsidies. Did I mention that my benefits run out when I turn 65, in another fifteen months or so.
When you get ALS you enter a Game of Trust. You hope that the Neurologists are truly doing what is best for you and not dishing out medications of companies that support their research. You also hope that these very expensive medications are helping you more than they are hurting you. Right now the Blood Tests are telling us that my liver is very unhappy. That is one of the side effects of one of the medications I am taking, the medication that is said to be the least effective of the three I am on. So do we stop that medication and risk the ALS Progression speeding up while looking after my liver, or do I sacrifice a healthy liver to slow down the ALS? I will let you know after my virtual appointment with my Neurologist next week.
So how did it happen? One month I was snowshoeing long distances and the next month I tripped twice falling to the ground. Not something that I normally did, and what I later learned was the start of “Drop Foot”. Eventually I was stumbling and having more trouble and I went to my Doctor who thought I had a pinched nerve in my back and recommended Physiotherapy. After a few months of getting worse I went back and told the doctor that this wasn’t a pinched nerve in my back. He got me a rush appointment to see a Neurologist, a rush appointment was a month away.
My wife was isolating as she had surgery the following week, but my daughter was visiting so she drove me the hour to the nearby town for my appointment. Honestly I hadn’t given the appointment much thought until I was en route to it, that was when it entered my mind that I might be headed for some bad news. My daughter dropped me off and I went in, he did a bunch of tests on me, making notes as he went on. When he was finished the tests and still writing away I interrupted him and asked him, “Hey Doc, how scared should I be?” He responded with “Are you here alone today?”, well I thought to myself this is about to take a really bad turn. I explained that my daughter had driven me and was picking me up. He went on to say that he really hated to do this, but he strongly believed I had ALS. Now all I knew about ALS was it was one of “those” diseases and that getting it was not a good thing. My head was still reeling when he followed that up with, People tend to die within 2 - 3 years of being diagnosed.
Now I imagine that everyone who gets that kind of news has a different reaction. My first thought is how do I tell my wife and my daughter, even more than the fear of dying is the overwhelming sadness of leaving them behind in this world while I go elsewhere ….or nowhere…. My second thought is damn it, I should have started taking my Canada Pension Plan at 60 instead of waiting until I was 65. My third thought is that Tim McGraw song, Live Like You are Dying. My fourth thought, was relief that the Canadian government had just recently passed M.A.I.D. legislation. Medical Assistance in Dying would hopefully at least give me some control over how my story ends.
What the First Neurologist believed was later confirmed through a bunch of tests at Sunnybrook Hospital in Toronto two months later. Well it is now ten months after I first heard those ALS letters used to refer to me, I progressed from being unsteady on my feet, to using a cane, to getting ankle foot orthotics, to using a walker, to now using a manual wheelchair. I will be accepting delivery of an electric wheelchair in a few weeks.
I have sold my motorcycle, tractors, pickup truck, my woodworking tools and machinery, as well as all the farm equipment I had built up over the years. My purchases now consist of medical assistive devices which help me manage my disability. We are moving from the home that we love and had dreamed of for years, moving south to a Condo where family and friends can assist with my care.
Yes you are right this is not how I pictured the final chapters of my life unfolding. Yes there is struggle every day, but every day there is kindness and love shared by friends, family and sometimes strangers. Just like nothing in life is all good, nothing in life is all bad either.
So what are the Reviews for David and Goliath, The Remake? Apparently it is a flop, nobody likes it. Sad stories don’t often sell in Hollywood, people want Comedies, Action or Superhero movies. Nobody wants a movie where the underdog dies in the end….but for now life goes on. There will be no sequel.