My name is Johan Coulembier and I was born in Ieper in 1951 as fifth child to a family of six. We had a nice family with parents who were held in very high respect. Also, my father was socially engaged, very much so. So we have never really forgotten his motto: “Go on in silence”!

I had a nice childhood where there was room for youth movement and above all (and in my case) for some musical instruction.

In mid-1973 I graduated as engeneer in Ostend and the day after I began work at Picanol, at that time and even now the largest employer in the region.

I was married in 1974 and later on I became father of 3 vigorous sons. Those were well-filled years. In the first place there was the education of our three children, naturally. My wife gave/taught physical education in the first years of secondary school ( -called a regentes- ) and she also trained elite gymnasts at the local club. I myself had a fulltime job at Picanol’s and my musical aspirations had introduced me primarily in the world of choirs. Next to being a singer and the occasional conductor of many choirs, I had a choir annex orchestra of my own since 1969, called Chorus: the group has been active until this day, albeit now under a much younger management.

In the course of time the children developed their talents through their studies and, coincidence or not, technique and music were always just around the corner! When you want to meat them all together, it will be either in one of those orchestras or at some musical event or in the house of one of them, doing odd jobs in areas such as the water works or the electricity. That active solidarity among my children -which I will refer to later on- is for parents one of the greatest satisfactions! Moreover I have 3 very nice daughters-in-law and already 5 grand-children … enough just isn’t enough!

In the meantime I had the chance, professionally, to experience some important evolutions in the company. Just think about it: down in 1973 computers didn’t exist yet, nor were there any mobile phones, not even photocopiers or faxes and stuff. Not to mention the industrial (r)evolutions and those in management. I was to be part of many challenging and exciting projects, learned huge amounts of things, had a lot of experience and enjoyed some marvelous team work.

All that brought me to China in March 2004. Picanol had a branch there that needed to be developed further. What started as “a 5 month supporting job” eventually became a near fulltime stay of about 12 years, just finished on the 1st of Februari! In fact my stay was due another 7 months as I will be 65 in August. Enter ALS!

In October 2014 I came to Belgium for a couple of weeks and in that period I often met with the music companies where I used to have a responsible function. During such a meeting I caught myself somehow at slurring. I did drink something at the time but I was far from drunk. I really wasn’t, even though some of the others will have had their doubts!

The next few months this occurred somewhat more frequently and distinctly. Therefore I went to see my doctor in November, whom I’ve seen for years 3 to 4 times a year for routine controls, e.g. my blood pressure. At first he sent me to an otorhinolaryngologist and then to a neurologist. In the next months several brainscans were run and also some other tests (heart, lungs …). The good news was that nothing worrying was found -that is, given my age. But in the meantime my speech problems had grown worse little by little and I found it hard to have my meals as well. Indeed, chewing and swallowing became more difficult: I had to adapt my eating habits, even though things were still feasible for me. I was diagnosed as having “dysarthria”, but what was the underlying cause?

Virtual shower

End June 2015 I got the final verdict: ”bulbar ALS”. I had heard about it, among others in the Ice Bucket Challenge coverages, but information on the internet gave me a virtual shower that was even colder … Strangely enough I didn’t panick and I didn’t lose any sleep over it neither. My attitude was and still is, actually: “We do as we can and of course we take into account that there will be problems in the future. We’ll just see, won’t we?” With the help of both the doctor and the neurologist we started up the necessary file at the VAPH (Vlaams Agentschap voor Personen met een Handicap – Flemish Agency for People with Disabilities).

Together with my employer we drew up a special scenario to permit me to end my Chinese activities somewhat more quickly. A scenario that was acceptable for the company and still could give me the feeling I had finalized my affairs quite neatly before passing them on. I could have stopped then and there last summer and I’m sure my employer would have respected my choice, but then I would have felt unfulfilled and I would have fallen into that famous black hole. Of course, the last months were tougher -the trip to China taking 24 hours- but nevertheless they give me a feeling of satisfaction.

The last half year I’ve tried to live as well as possible with my “handicap”. For instance, through customized speech therapy, which is really rather more intense than mere speech practices: so for instance they give me a few tips on how to swallow. I was lucky to find this therapist who apparently has the knowledge and experience necessary for my specific problems. As a matter of fact she was the first to give me the address of the ALS Liga!

My last trip to China was from January 15th to February 2nd. It was an exceptional experience, because my 3 sons had proposed to make that trip with me and take their holiday at the same time! The fact that their wives agreed to that (and so had to deal for some 2 weeks with everything back home) is just fantastic/was a sheer luxury! It was my task to see one last time if the Chinese company was moving on smoothly and according to plan after the reorientation of my functions and occupations there. We also cleared the apartment I had occupied for 10 years and said farewell to many colleagues and friends. I realize now I couldn’t possibly have done all that without the help of my 3 sons, physically (as I lost my strenght, was quickly out of breath, etc.) as well as mentally (or better still: emotionally). For them too it was an exceptional experience. If we are ever to talk about my stay in China, I’m sure they will be able to imagine it very well!

So this is the beginning of a new chapter, I could even speak of “my reintegration” in Begium! Since 2009 I have this small but new apartment in Ieper, in fact I live there on my own. My wife and I agreed in 2006 to end our marriage. We didn’t quarrel or something like that, we just grew apart, that’s all. In fact my stay in China had nothing to do with it. We still have a friendly relation and of course, our (grand-) children create a strong bond. One example: on Christmas Eve we ALL still gather in the family home.

Getting by

And so I just live alone, which I was used to all those years in China anyway and therefore I’m feeling all but lonely. I’ve already told you about my family and that I can count on them, including my ex-wife, but I’ve got also 2 brothers and 2 sisters, living just a few kilometers from my place. In addition I seem to have gathered quite a few friends around me in the course of time, via the company and the choir -among others. I can really tell you that their help just keeps impressing me!

As I said before: we are doing what we can. I just love to cope with the whole situation on my own, experimenting with customized meals and participating whenever I can in social activities. Visits to a restaurant are somewhat rare these days, but that’s not a problem as there are enough alternatives. On the other hand I know now that restaurants can offer nice, delightful and for me edible dishes –and certainly so when they know I’ll be coming. In a sense I’m even having fun experimenting in my own kitchen with edible dishes, trying to make them keep their specific flavours.

I hope I’ll be able to “get by” for a long time but I’m already somewhat prepared if things should cease to turn out the way I want. Through my writing, which is still unaltered -that is I think but, well, let the reader be the judge of that!- I’ll try to keep in touch with the company, the associations, my family and friends … so as to be still of use to others and share my lifelong and diverse experiences as much as possible.

Translation: André De Laet