Column May 2013

That time sometimes flies fast I obviously don’t have to explain. That this same time sometimes creeps painfully slow might need a word more.

If you are sitting somewhere waiting, in the waiting room at the doctor's, in the car on your son who missed his train or just until friends arrive at your place for a nice dinner, then the time can often tap enervating slowly almost on the spot. What most people do is move a little, a finger, a hand, a leg, take a walk, read something, play pinball on your mobile phone, anything what distracts your attention. Well, I imagine now you’ve a disease like ALS and inert, be in the frozen nature of time, connected with the material world, where you barely from one hand, and you can’t tap nervously with your fingers on the table anymore or wiggle your leg like the pendulum of a clock trying to count the time and killing time. I believe that many people with the disease - or more generally with a serious condition – also stay permanently in a kind of immanent waiting room, forced into it by a strange fate, where you're waiting for what follows. Something that follows can be worse than what is already, that’s the hard, leaden and deepgray waiting. But also, and above all, there is a glimmer of hope in the impatience, hope something positive will happen, an unexpected turn. Something like in a Hollywood movie, something you say, "Wow."

Waiting for a ‘ Cure for ALS’, to use the slogan of the ALS Association. I think that I, in case I was an ALS –patient, and had to wait, then rather wait for a cure than on the confirmation of what the disease and its evolution would bring. It is a matter of focus, how you focus. A matter of dealing with the aforementioned time. If you wait for something nice, the time of waiting goes faster than if you so aimlessly wait in the waiting room at the doctor, who’s ever always too late, but you don’t know exactly how late.

Such a miraculous breakthrough in the research for a cure for ALS is obviously a fantastic dream, as for in a movie, and will probably never be quite how reality will ever be, but that’s why it’s a nice dream to cherish, a kind of support, for anyone who has the disease and the families who’s indirectly affected. I believe that often making a reality the effect that you should believe in something with enough people, a dream, and you so ever, in some inexplicable way, a part of that dream looks to be true. Because numbers are always important, it’s important that the dream is also supported by more and more people. I really think that this will have repercussions later and that research may lead to slightly productive.

As we know from the film that miracles don’t happen just like that, and often, behind the scenes, a lot of work and effort and resources needed to write down the reality what others could see as a dream, but this dream can’t be done without the necessary material support. At first we think of money, budget for scientific research. This is also high priority for the ALS Association in all its projects and in all fundraising she does : collect as much money as possible for research. The resources and funds are always too small, especially for something like an incurable disease, to create thereby the frame within researchers can work towards realizing that dream : A cure for ALS.

I actually wanted to start with the time passes quickly, if you know what to do. In my case for sure the last few weeks. So fast that it's time to write a second column. I hadn’t yet realized the last few weeks when meeting almost all staff and volunteers who work for the ALS Association, and I had the chance to learn more about the organization. I must admit that it always has to get used to, a whole new bunch of people and faces, an office environment with computers and so. Yet it was quite fun and I must say I ‘m amazed at the overall level of professionalism and seriousness of the league and the employees. Maybe it's weird to say, because ALS is obviously a serious matter, but I visited several offices in the financial sector where the general level of professional behind the scenes wasn’t often of that nature. The difference also lies in the heart of course. Because I notice that in most volunteers, they carry a kind of commitment, sometimes smaller, sometimes bigger, something that comes from the heart. A kind of inspiration or something. That's always nice, today you don’t see that so often anymore.

There are of course volunteers in superlative, for who the inspiration goes even a lot further, because they have a high level of personal involvement, either because they themselves have the disease, or close family who have or had the disease. With them I notice a more deep-seated bitten of, where inspiration becomes more a mission. It's always wonderful to meet such people and to work with them, because just like great artists, they fully immerse in what they do, and almost nothing else exists beyond. I also think that they have a big influence on the organization and also stimulate the enthusiasm under other volunteers and keep it alive. Let me no eulogy of it, but I wanted to mention it for credit where credit is due.

Meanwhile I find already better my way through the corridors of the old St Raphael Hospital, or actually rather, the straight direction to an entrance and exit, to the elevator to the fourth floor where the ALS Association is. Very easy and I don’t need now to navigate through half the hospital Handy so!

Actually solutions often the case, you think you have to explore the whole puzzle, understand and then analyze and find the root in order to find a way out. While there is often a very simple entry or exit anywhere along a different path, which you can’t see through that whole tangle. For me scientific research and searching, finding a possibility or a cure for a disease like ALS something like that. Mostly spectacular discoveries and twists come out a small street, an unpredictable turn, often pure by coincidence, or as a result of stupidity, even something as crazy or stupid so that no one has ever thought of before. And that we call genial, at least if it leads to something, otherwise it will stay simply stupid or crazy. I still find this a reason to provide enough resources for research so some at first sight less interesting tracks are well studied, experiments are done, and then maybe something no one had dared to expect lead to a solution?

I'm not going to give you more reasons why to donate money for scientific research so important for all ALS patients on the long term. This is the only hope for a real change, on something better than electric wheelchairs, voice computers and chin controls. It is wonderful that these tools exist of course, but ultimately it's a small consolation if you end up in that situation.

As the ALS Association is currently running an action on the social media, as it’s called, Facebook so for you and me, I urge you also to look for and to like the ALS page on your facebook account. For every Like one euro goes to the investigation, donated by a generous sponsor (https://www.facebook.com/ALSLiga).

And let's be honest, if you’re standing on the sidewalk next to an ALS patient sitting helpless in his wheelchair, and ask you, would you pick up that euro lying there on the ground for me, why would you actually refuse?

Tristan Herftijd,

Sugar Mountain, mei 2013