Being diagnosed with ALS is like being hit with a sledgehammer and waking up to find a massive dark cloud hanging over you, knowing that it will never go away. My first sustained symptom started in the right foot with a slight limp. Initially I thought that I had injured my ankle while playing a football (soccer) match. But thirty years of experience as an active footballer told me that this time it was different. Although I had no idea what the problem was, my gut instinct told me that something was seriously wrong. My body began to react, my limping increased, and I began to despair. All this went on long before I was actually diagnosed in 2010.
ALS is a chronic, progressive and fatal disease; that makes three sledgehammer blows. The year was 2010, and the brightest scientists and doctors were still far from finding an effective cure; yet another blow. Seven years on, they still haven’t made much progress. The disease continues to creep slowly around my body, snatching away all the voluntary muscles in its path. Blow by blow. My life has been turned upside down, and everything I had built up is now crumbling away.
A year after I was diagnosed, I was walking around with the aid of a walker and felt like I had the body of a ninety-year-old. Around that time I saw a YouTube video of a young ALS-stricken man who was totally disabled, in a wheelchair, but without a respirator. I recall thinking that if I ever became as disabled as he was, I would go mad. I would probably shoot myself, I concluded.
A year later I had become as handicapped as that young man, but I had not taken into account the fact that I would not even have enough muscle function to hold a gun in my hand. I began to wonder whether I was going crazy. And my condition was going to become even worse than the poor guy in the YouTube video. Much worse.
If I wanted to survive, I had to have a gastrostomy tube inserted to deliver nutrition directly to my stomach. Then I was faced with having to decide whether or not to become completely dependent on a respirator for the rest of my life, because the disease was stealing the power of my lung muscles; two new blows.
Yet another blow came when I got infected with MRSA. The doctors said I would never get rid of the bacteria. I had to have a PEG (percutaneous endoscopic gastrostomy) tube inserted into my stomach and a cannula into my throat.
But that sledgehammer didn’t stop there: my deteriorating condition now made it impossible for me to continue living and home, and I was forced to leave my wife and daughters and move into a nursing home. For three years now, I have been lying in a bed in this nursing home. You can read a longer post about it here. I am now done wondering whether or not I’m crazy. I’ve reached the conclusion that the reason I’ve tolerated all those blows is because I want to live! And because I’ve discovered more about myself: “I am that I am.” Exodus 3:14.