Column April 2013

Sometimes someone handles on his gut feelings, as they say, without really thinking, you rely on some kind of blind intuition. In retrospect, you’re often surprised where it brings you and see the different connections existing already to your own life, experiences, people you’ve ever known or admired, close or from further away. I found out myself at the Academy of Fine Arts in Antwerp, where you learn that creating art is something huge intuïtiefs and therefore a tremendous truth. Because of that you come to the most strange and amazing experiences.

Now, I think it must have been on Easter itself, I had something similar that if it were itself a play script. I myself mainly busy with photography and art, and looking occasionally on the web for volunteer jobs in photography. Now I had by coincidence my former writing talent mentioned and was I looking for a volunteer job as reporter. Voluntarily because of my status as disabled, for more than five years now, and because sometimes I hear a call deep in my mind to make me feel useful and to do something for others. I learned that it’s a better medicine than any I’ve to swallow. My disability is not severely limiting because of a spiritual nature, bipolar disorder, but definitely very annoying and yet more restrictive than many people would immediately suspect. Hence my deeper interest and connection with other people with a serious problem, to express it like that.

Purely by coincidence I found on the website of the ALS Association that they were looking for a reporter. I knew not much about ALS, and when I visited Wikipedia and started reading the explanations about muscle disease, a coin dropped, ah yes, I had of course heard of it. But what a complicated name, I won’t even try to remember.

Bluntly, send mail, and then just about three (it may have been four) days after Easter I was with Danny in the kitchen for an interview. Danny himself has ALS and can speak but is further immobile. I had not expected to be confronted immediately with a patient and felt myself shortly uncomfortable. How do you react? Handshaking would be ridiculous, so I nod, but rather with a smile of hello. On itself it’s admirable that someone can be a patient in such a difficult situation and meanwhile support such an organization, I had honestly never expected.

Still impressed by the king sent wheelchair - I'm a trained Engineering and technology fascinates the little boy in me still - Danny starts to tell me about the disease. I thought I read somewhere it was a slowly (but surely) progressive disease, but that turned out not to be as slow as I had imagined, sometimes only a few years. That was a shock, because that puts all in a different perspective. Danny also tells me that euthanasia happens regularly, that I need to be prepared with the confrontation to death and the road to it. If this scares me? No, not really in fact, I find it rather fascinating. I've been preoccupied with death myself, and coming to a stage no fear plays anymore. And if it isn’t too heavy to coop? That’s something else, and I dare not say so in advance, but I think that this should work.

One aspect that we maybe forget sometimes, and also like to forget, is the final impermanence. Now everyone dies sooner or lately, but the way to it is different for each, and it’s rather life itself that makes carrying a disease like ALS heavy.

Somewhere it fascinates me how people affected by ALS react, deal with it, each in their own way, and apparently still many people who succeed to keep a positive attitude. Especially that intrigues me. How can someone who is beaten so hard by fate, yet find a way to find a psychic way within very strict (physical) limitations Maybe it’s because of the such strict and many limitations associated with the disease, there remains really little more choice, or freedom of choice, or even freedom tout court? I’ll definitely think about this some more, and come back to it later.

That a lance may even be broken for ALS was very clear to me. More funds for research for medication is ultimately the only thing that can really change something, and is perhaps the main hope that many patients still cherish. Danny asks me therefore to maintain a columnin which this aspect see his part, and in which the policy and social aspects about the research find a place. That seems indeed the most useful thing I can do, that, and hope that something is moving, starts moving and that the researchers’s coin sudden falls on the right side.

In addition, I just want to reflect about my experiences in this column, on how I see things and how I as a total outsider towards ALS, a disease that is almost perpendicular rises, ALS patients see, experience, learn from them, try to know them as a person. Both in text and in pictures, my own feelings and emotions will always be found, and I hope that everyone who reads this that knows how to appreciate!

To return to the subject of this text, about the intuitive, the feeling strikes me back also now with my limited commitment to the ALS Association, to learn something unknown, new doors open for me. Doors to rooms very well known and reminding on parts of my own experiences.

Ultimately, it is an acceptance and coping with an illness, with destiny, with the associated constraints and the direct experience of impermanence. These aspects are actually all universally human, and you will find them all over again in all their shapes and colors, if you’ve an eye for it. In art, in literature, in theater, in photography, in philosophy and also just any day with random people who sit on the train or bus, or against you with their cart in front of you at the counter of the supermarket ...

There are two images now staying with me from my first contact with ALS. The first is an earlier vision of Stephen Hawking probably the most famous ALS patient. This brings back the view of a sculptural installation I saw in Avignon, a dozen years ago.

Here stood on a steep cliff with deep abyss placed (as sculpture), with on the top of the edge Stephen Hawking in his wheelchair balanced on the edge, the subtle fragile balance. The title of the work was "Superman". That made ​​me even to think then, and now again. Could it be that other aspects more strongly develop from certain limitations, such as a blind man could hear better?

A second image is very direct and is situated in the basement of the St. Raphael Hospital, where all the wheelchairs of the ALS Association are parked. Their numerous, closely, room-filling, was soaring to behold. It gives a man think about numbers. I've never seen so many wheelchairs packed together, and it was a pity I hadn’t brought my camera. I will definitely do it later. This image reflects the enormous and the potential to help when and where needed. I also think that this is unique on itself for the ALS Association. On the other hand, this fullness would not have to be, which should encourage to reduce the number, with research come to cure the disease or prevent it, or perhaps an understanding on the how and the why. Empty wheelchairs waiting for sure on their new owners, new patients with ALS, maybe even you or me, or the man with his cart in front you at the counter of the supermarket, who is currently not yet aware of evil...

 

Tristan Herftijd,

Sugar Mountain, april 2013