This spring, Adriaan Aerts from Tilburg turned fifty years old. Nothing special you would think, but for Adriaan it was. Because of a rare muscle disease, he had a life expectancy of only three years. Now Adriaan is committed to people with disabilities with his own foundation: “At my primary school they fell by the wayside. ‘That won’t happen to me,’ I said to myself.”
Shortly after his birth, Adriaan’s mother noticed that something was wrong: “I didn’t move very much, I lay a bit still in the crib. The doctors told my parents that I had a serious muscle disease and that my life expectancy was three years. And if they had more children, they would too. That was the reason for my parents not to have any more children. A big blow. Even more because they had a farm and hoped for a successor.”
“I can only move my thumb and index finger.”
Adriaan was never able to walk. But he could write: “I finished my studies at the meao and heao with the pen. And I did wheelchair hockey. Now I can only move my thumb and index finger.”
Adriaan has a severe form of the muscle disease SMA. But he’s not the slacker type. And he embraces technical progress: “With my thumb I can control the wheelchair and with thumb and index finger I operate everything in the house: telephone, lamps, doors.”
Early on, Adrian learned to count his blessings. “I went to a Mytyl school. Well, there they fell by the wayside. In wheelchair hockey, scouting, classmates, holiday friends: every holiday friends died. If I were to make a list, it would shock you. About the two hundred people who are on it: all friends who have fallen away.”
“I almost took notice of the death of a friend.”
Sad, of course. But when death is so ubiquitous, as a child you find a way to deal with it. And that’s how Adriaan thought: “I almost took it for granted. That sounds very businesslike. But I hardened. Said to myself, ‘That’s not going to happen to me’.”
“He has overcome his fear,” says Erica Theloosen. She helped Adriaan write a book about his life. “I think it’s so incredibly clever that he could turn the switch when he was so young.”
When you talk to Adriaan, you notice how optimistic he is. A sharp mind resides in the broken body. And humor. You can also read that in ‘Your world is my world’. Adriaan initially wrote it himself. But when that was no longer possible, he enlisted the help of Erica.
“He was emotional at times, but he couldn’t wipe his tears away.”
Those were sometimes intense conversations: “Then you have someone sitting opposite you who is very emotional, but cannot wipe away his tears. I thought it was very intimate that he dared to tell me his story.”
The proceeds of Adriaan’s book go to his own foundation Dovie. That stands for Drempelloos on holiday in England: the country that Adriaan loves. But traveling is a challenge for him: “My problem is that I have to take so much with me: a hoist, bed raiser, bed headrest, shower chair, stretcher for showering, you name it.”
So Adriaan looked for and found a place in England where all those facilities are already available. With his foundation, he ensures that as many people with disabilities as possible can enjoy that holiday home.
“The goal is to survive my mother.”
Once it was Adrian’s dream to turn forty. But he grew older and experienced things he never expected: “I realized that four years ago when my father died, aged 73. Normally you outlive your parents, but I never expected that. Now I also want to outlive my mother. Not so much for me, but for her. I want to save her at all costs the suffering that she has to lose me in addition to my father.”
The presentation of Adriaans book is on 14 November in Tilburg. Leo Alkemade presents and Huub Stapel is also there. Adrian’s mother gets the first copy. The book is already available to order and more information find you here.
