I am Peter Smit

living with ALS


Rather I focus on what I can do at this very moment and not on what was lost or what the future holds.

In the spring of 2019, I was working as a freelance spokesperson for the local government in the town Sliedrecht in the Netherlands. I noticed I had some difficulty pronouncing Sliedrecht but thought little of it. When it didn’t automatically heal, I went to the doctor for advice. We figured it was a side effect of a drug I was taking at the time but he sent me to a neurologist for further research. The neurologist took an MRI of my brain and found no sign of a stroke or TIA nor a tumor that could explain my speaking disorder. So they continued researching my nerve condition. After the research the hospital called me the next day to see me again. The thought that it might be ALS crossed my mind but I dismissed it as too absurd. So I was totally surprised when a few days later -it was March 23 2020- the neurologist told me I have ALS and an average of three years left to live after the first symptoms. I was devastated and so were my wife and children.

My new Tesla car, my stock portfolio, my second house in Italy, my retirement plan, it all turned to being worthless at once. But I still had my beautiful loving wife and children who matter much more now. And I realized how many friends I have. It took me months to tell them all about my disease. Luckily, I had been training my muscles for the last couple of years so my starting position was good. I’ve been doing Zen training for over twenty years and the meditation helped me a lot to cope with the new situation.

The most important insight I had was not to define the attitude toward my disease as a fight, as so many do. As for now there’s no cure for ALS and you’re bound to live the rest of your life in a fight you just cannot win. Rather I focus on what I can do at this very moment and not on what was lost or what the future holds. I go along with the process without fighting anything. But I do whatever I can to stay fit. As work has become less important I retired in November when I turned 60.

Since the diagnosis, almost a year has past. I come to the surprising conclusion that ALS has brought me far more good than bad. I live more intense than before and concentrate on what really matters. And I started to write, something I was planning to do most of my life. I try to be there for others and the relationship with my wife, children and friends have deepened. I think I can hold on for a couple of years and make the most of my time.

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