Tom Cornelissen
In 2018, I was 44 years old, I had been working in construction. Strong, healthy, and just starting a new career as a site manager at the company where I had been employed for 18 years. It started with a strange feeling in my left foot. As if I were wearing a thick sock. Later, I learned that this is called “numbness.” Six months later, my right hand started shaking when I lifted a cup, and shortly after that, everything felt like it weighed 100 kg. So, I went to the doctor. A second opinion led me to a neurologist. There, I had an EMG, and he said, “This is not good. You have a neurological disease.”
Six months of testing later, it was identified as CIDP. I had never heard of it before. The doctors had very little information about it. I remember having so many questions, but there was no one to answer them. You don’t know what’s coming. Maybe that’s a good thing. In my case, I sought refuge on Facebook, looking for others. I read terrible things. That’s where I met a more experienced fellow patient in 2020. We are still good friends, and she taught me everything and gave me support. That must not have been easy for her.
In 2021, there was a restructuring, and I was laid off. I was devastated. You can compare it to a steam train. You’re in the locomotive, shoveling coal like a madman. Despite the loss of strength, numb feet and hands, suddenly, the train crashes into a boulder. You are thrown out and watch the train continue without you, with all your friends and colleagues. There you lie in the field, on your back. You see the clouds, the sun, a flower. And you realize that your wife, children, and family are standing around you—all these people who had come second.
It’s not easy to get back up. I now have a different job in the public sector. It’s a new normal, but I spend much more time with my family. When volunteers were being sought for the Foundation, I remembered how lost I felt before I met that woman with CIDP. That’s why I committed myself to finding and helping other people in the same situation—by talking and informing them.
Two things I now live by:
1. It may seem in the beginning like you’re losing everything, but it’s just the chaff. You will see what and who really matters.
2. An old carpenter once told me when I was young, “Adapting is surviving.”
