Column June 2013

Last Friday World ALS day and I had the honor and pleasure to be at the official opening of Middelpunt, the care center at our Flemish coast in Middelkerke. I know Middelkerke reasonably well because both my mother and my grandmother always used to go there when going to the coast. Why, I never knew, it might had something to do with its location, in the middle on the coast, both ladies had a sickly effort to choose, doubt as pathology and as play of demand for attention, so I know them well.

The care center is the child of the ALS Association, and specially of our chairman Danny, who put the heart and soul and body in it to get it realized as prime item. It’s a place where patients with severe special needs, like ALS patients, can come on holiday, to de-stress, to do for relaxation, fresh sea air, etc.

When I walked around there last week, I understood immediately and without words why Middelpunt can offer all this. The care home has a peaceful atmosphere, both inside and out. The building is spacious, open, with lots of light and with architectural simplicity and does forget something so obvious that you get the feeling you've been there once before. I know myself something of architecture and to be honest it's a very nice concept that works from the first sight. A compliment to the designers and implementers. Also the square circle structure of the corridor where you always can keep eye contact is wonderful. If the corridors were just made a bit wider than they also serve as a real wheelchair race circuit, the playing man in us likes to have something. All joking aside, it’s beautiful as it is, and the spaciousness was delighted. I'm wondering how someone with ALS in a wheelchair experience this, but I assume that they experience it as a breath of fresh air to find sufficient space find to maneuver everywhere.

The official opening was a busy event, with BV’s and other fine people, and as icing on the cake our most cool royal representative, Prince Laurent, who specifically stopped the tree planting in Israel to get back in time (but still a little too late) in Middelkerke. A royalty is still very special, because it draws attention to itself and also attracts many film crews and press journalists in its wake, which is of course a welcome bonus for the Center itself. A short section in the VRT news at 19:00 was the result in which the ALS Association came into the picture nicely thanks to Danny and Evy with a short demonstration and explanation. Actually it's amazing that something like this happens, especially now, in the context of the media campaign of the League, to make the disease ALS known in order to be able to recruit more funds for research.

The opening awarded the work of many years the League did to achieve this, even some ALS members already deceased, and still a very busy period that preceded it. This month I wanted actually write about medical aspects and scientific research, it has been just too busy and
there's too much news to tell about everything that's happening now.

Last month, I went to three events for reporting. In addition to the opening of Middelpunt yesterday, there was earlier the performance of Toto at Forest National and the fundraising of patient Mil Boeckx. When I recount this and briefly outline you'd think the most impressive might be Toto’s band and the meet & greet, or Prince Laurent at the opening of the impressive center at sea, or perhaps even the somewhat gray eminence of Geert Bourgois, who was also present at the opening yesterday, but no, nothing of this, and even Marianne and Simmoneke from Thuis captured on the picture couldn’t come near, although I had to admit it was close. No, without a doubt, which personally made the biggest impression on me was the fundraising of Mil Boeckx from Oosterwijk. Where is Oosterwijk, I hear you thinking, well, somewhere near Westerlo, barely visable to many outdated GPS, like mine. Small but fine, like that. And precisely therein lies the impressive, the 'small' becamed the 'grand'. Mil is just a man who a few years ago was forced to start the battle with ALS and is currently paralyzed and to speak through a computer. He is certainly not a BV or royalty, and I also think no rock star - though he likes music a lot I noticed - but he managed himself, together with his friends and close family, to organize a fundraising for the ALS Association for the benefit of research with a record amount as result. Now it is not money itself that made an impression on me, though figures speak for themselves of course, but it was the whole happening of the charity on the day itself. At the Church of Oosterwijk, in a fairly large marquee, so many people attended. It seemed like a whole village stayed home that day or if the ball of the mayor took place. All ordinary people seated at tables or standing, indoors and outdoors, sitting or walking, children playing, and a stage with music, artists, instruments. Everything and everyone breathed his presence out there and wanted to be there, and was happy to be there, to be there to help Mil, to support, to give money to charity, and give him a warm feeling. All these people - the press spoke of 4,000 people – didn’t come to get a glimpse of Steve Lukather from Toto or Prince Laurent – or just say, from Geert Bourgois, no, they came for Mil Boeckx himself, someone they might knew better than the royalties and therefore touches more deeply. However, why this is the most impressive for me. That one man can set this in motion and have an effect on all those people. There are in the Belgian football league first class football with less people attending than on this benefit, it speaks for itself. I was, and am still speechless when I think of this.

The emotion that arouses something impressive makes itself felt, and certainly with Mil himself and his close family. It is touching, beautiful and at the same time heartbreaking to read Mil’s emotion from his face. Actually I know in the world and in life no more things more beautiful, and nicer than that. In one way or another Mil knows to inspire people, without words or text, silently, without moving, only with his eyes and look, and, not at least, his expression and his laugh. I wish him all the best in any case and want also award him for his courage to do all that and endure when you're in a situation like his. I'm not sure I would have the guts and courage for all this, not now, in my situation now, and certainly not when I would have ALS ...

Speaking of emotion, I initially had the idea that anyone who sat in a wheelchair, and therefore who has ALS and use a wheelchair and can’t move, feels nothing. Nothing appears less true for ALS patients!

It makes perfect sense of course, because only the muscles paralyze and there’s no nerve damage in the limbs. But you don’t reflect at that moment and stop to think. ALS patients have the same feelings like other people can feel, from the soft touch or tap into real pain. Sometimes it's more of a disadvantage to feel when you can’t move or do anything, but feeling nothing is then again stultifying and a limiting. It reminds me on my own illness where the choice and balance between feeling and not-feeling often poses a major problem.

Just imagine you’ve ALS and you can’t move your body but you feels like you can feel now. It's summer. It is sultry, hot and humid summer weather and there’re lots of mosquitoes and flies. The kind of flies driven, stubborn flies, sucking or biting into your hand, or what they actually do, it looks even like stabbing. They stay very long if you’re not driving them away by moving one of your limbs. But you’ve ALS. You feel that damned fly sitting there and she bites. It hurts. Go away fly. You want to punch and / or knock them away, but your limbs don’t move and it tingles on your hand between pain and tickling. You also, unlike horses or cows, don’t have a tail to wish those damned little beasts somewhere else. No, you sit there and luckily there's someone else, a helping hand let's say, who can help you out of trouble, and with a very simple gesture chasing that fly away, a simple swipe, it looks a bit like a blessing of a priest, and it also feels like it too I suppose, because you’ve ALS and every helping hand is a blessing.

Coming back to the opening of Middelpunt: on most patients who were present, I could sense a kind of be-happy, a kind of aura of happiness, because finally there is a place where everything is available, and where you can go to for a break, with the whole family, without much hassle. For our chairman Danny it was a tired and even exhausted feeling of happiness, I think, because this is ultimately his dream realised and for which he worked hard, what of course demands its toll. I hope sincerely that from now on other patients will fully use the existence of Middelpunt, so that all the blood, sweat and tears have reached their goal.

I already have the intention, once Middelpunt is running at full speed, to return and make a documentary about the patients who stay there and gauge their happiness and experience. I find it interesting and also think that it can be a nice story about ALS patients.

A final interesting aspect on Middelpunt, which also appears politically interesting, is the fact that the staff there actually also disabled is, and instead having to work in a sheltered workshop, to have a job in almost a normal environment and to help and serve other disabled people. In fact, it's very nice. I suspect that it also combines reducing operating costs, to show a glimpse of the other side of the coin, but it is good these people can make them useful in a social context, and with a public that can use all help. It’s actually based on what being social means, or what - as my father always described - "socialism" actually is, or perhaps more accurately, what solidarity is essentially mostly is: one poor guy who helps another poor guy.

Not that this should be understood in a strictly political sense. Yet it is too often the case that those who don’t need help, there also little need to give. Fortunately, there are other needs that might encourage people to help, might not all equally noble and noble, but they do work and if those can be helped in their needs that's fine too. Also here at Middelpunt such a story will be hidden in the fundraising of all the money that was needed for the realization. With a private sponsor with its own motives to invest money, with the money from governments, with money from donations, and also out of pure empathy, could still a workable result be achieved. I still hope that an organization without own interests and with only the interests of the ALS patient's in mind, like the ALS Association, is closely involved and can remain in the functioning and exploitation of the Center. I think that the complex structure in which the ALS Association still has a lot to say indirectly in the entire organization, it is also guaranteed in the future and continue. Because what I most detest is when solidarity with people in need will be used and abused for political, commercial or other interests. So it is nice that disabled people can work to help other disabled people, but I would always warn against a trend in which disabilities just like students are used as alternative labor so as to reduce the high labor costs and to improve the competitiveness of businesses and our economy.

When I think of the whole social sector of nursing homes and how you currently see that for people with a certain financial status this one of the most attractive investment areas is, this makes me think. Because what creates a profit, will always attract investors who go where the money is made. They come, they go away again just as well without engagement.

I'm talking about a more general trend in society that should make people think, all of us, and that should also make the politics think about how and where the monitoring of proper ethics and do anticipate misuse and abuses within these new formulas in the whole care sector. Also for Middelpunt, on which I count that everyone cutting ribbons in front of the cameras will ensure that the shared dream of cripple people in their wheelchairs won’t eventually sinks into a swamp of good intentions, opportunities, excuses and political cowardice. No, I expect from you all: Middelpunt can and should be an example and become and remain. And for this we’ll often handle the mentioned stubbornness of our chairman Danny Reviers as standard and continue to maintain, today, tomorrow, and long after the loud cry for help expand on the waves of the North Sea where the silence and tranquility of this immense mass water, continuous movement in this matter. A grounding for everything turns crazy in our world, an escape from the traffic and hustle to find your way by car during peak hours in Brussels away from the stress in many offices there.

Talking about the cry for help. In recent weeks, the media campaign of the ALS Association everywhere, with radio spots, on TV, in the social media, in newspapers. It's a loud scream, and she also begins to sound louder these days. I think of the famous painting by Edvard Munch 'the Scream' and see now how the sound of the call accumulate and begin to resonate at higher peaks. The day after the opening of Middelpunt we see already s results when a Member of Parliament, Ine Somers from Open VLD announces to demand more money for ALS research from the government. Reference is made to the disease AIDS, which seems about as many casualties as ALS, but for which the government has reserved more money. Now you can hardly compare AIDS with ALS seems so, because AIDS concerns the entire population, and more specifically the youth, because just about everyone runs the risk of becoming infected. ALS is of course different, but you don’t need to be infected, you can do little or nothing to prevent, it is just like a grand piano from the 101th floor fall on your head. Still, it's an interesting comparison, the number of victims and the resources used, and this is certainly a thought-provoking comparison. Because ALS strikes far more random than AIDS, which is still more situated in specific risk groups. ALS is an insidious serial killer who has no regard for who his next victim will be, young, old, gay or straight, man or woman, priest or prostitute, all make the same chance to cross this killer on his trail. Will we ever figure out his true identity?

 

Tristan Herftijd,

Sugar Mountain, June 2013