Ronny De Clerck

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"Hi, my name is Ronny De Clerck, 46, and I live in Puurs. For many years I worked as a navvy and in that profession I did some tough manual labour: digging ditches with my bare hands, taking care of people's plumbing, from outside the house down to the cellar. My wife ran a cafe for 22 years. During the weekends we worked there together. We had to close the cafe when my wife was diagnosed to have cancer. Shortly thereafter she died from that desease. After that I met Sonia, whose husband also died from cancer and at this moment we have been together for five and a half years."

"How did it all begin, you may wonder? Well, in the evening, after my work, I took analgesics so I could stand the pain in the muscles of my arms. Sonia told me I should go and see a doctor, but I always postponed that, thinking: “In a while the construction business has its vacation! That's when I'll go and see my doctor!” He thought I had a tennis elbow and gave me some medication to help me out, but after a month or so nothing had changed.”

“Then he said I should go to the hospital for further examination. After 14 days I could land an appointment with a neurologist. She suspected the cause to my problem, but she couldn't confirm it and so she sent me to a hospital in Antwerp. There I didn't get enough explanation either and that's why I went to Leuven. When they told me there in November 2014 that I had ALS, I cried -and so did Sonia. In the beginning I found it very hard to accept the diagnosis. I hardly knew what ALS meant and so I went and looked for more information on the internet on the subject of this desease, but that didn't make me any wiser. My friends didn't know the desease, but my girlfriend's brother and her best friend had already heard about it.”

“I took part in the VEGF study and therefore I had a serious operation. I'm very sorry that this study was cancelled as in a short lapse of time I found it increasingly more difficult to talk and to swallow.”

“Plaing pool (snooker?) used to be a hobby of mine for many years and I continued to do so up to February 2015. After that all I could do was watching the game and I wanted to do just that, because that way I could still meet my friends. As of recently I can't manage to do this as it exhausts me too much, which is all the more a pity as I find it more difficult to meet other people. I'm kind of a social person and I like to be with my friends, but some of them find it hard to deal with my desease and don't like to visit me anymore. They can see that my situation is deteriorating and don't seem to be able to handle that. And so you get to be isolated more and more.”

“And yet in September 2015 I went to this ALS contact weekend in Middelkerke. It was a fantastic experience and we enjoyed it a lot. We got to know many people and even made a few friends. At the end of September Sonia and I went to Turkey together but after that, unfortunately enough, things went downhill.”

“That's when Sonia began to talk some sense into me and told me I shouldn't turn my back on people but instead had to go on meeting them. She absolutely wants the best for me and proposed to go to a care centre. At first I was reluctant but when someone told us about this centre in Brasschaat for people with disabilities, we went to have a look anyway. It's called De Vrije Vlinder (Free as a Butterfly) and I liked it immediately. Last year in December I stayed there for a week and it was an instant success.”

“I immediately took steps to be able to go there all year long, that is alternately two weeks at the centre and two weeks at home. I'm making plenty of contacts now and the personnel is extremely kind to me and they stay at the ready 24 hours out of 24. In the beginning Sonia felt she had failed me, but I immediately made it clear to her that I am going there to enjoy myself and not because I want to be away from home. So, in a way, Sonia is keeping her freedom and a bit of a life of her own when I am at De vrije vlinder. She has realised now that this settlement really is the best. I'm very much looking forward to the day I can go to the care centre and when Sonia comes and visits me and the weather is fine, we can go for a stroll in the wild as it lies in a very green neighborhood. Then we go to a farm nearby that was turned into a tavern to drink something and eat a pancake. That's what we call enjoying things together!”

“We can hardly wait this year to spend the ALS weekend at the sea as those people over there have the heart in the right place. We are glad we got to know this organization. I do hope I may still be able to enjoy life a lot and that something will be invented to slow down ALS or -better still- beat it altogether.”

Which items are still on your bucket list? What are the things you want to do or realize in your life?

“I would like to travel to Brazil and to go on a cruise. For years such was my plan but my job always got priority. Also, I would like to find work as a volunteer that I could do together with my Sonia!”

Ronny De Clerck


Translation: André De Laet

Source: ALS Liga-magazine 171 – January, February, March 2016