Column September 2013
About Sugar Mountain and the importance of wheelchairs
A few days ago someone asked me if I live in America. Even I was surprised about this but the confusion appeared to derive from the fact that I sign my column with Sugar Mountain. I had to smile about it because it's something that I've actually copied from a old teacher of mine from the Academy of Antwerp, a very known art critic who writes a lot, books as well as magazine articles. He signs his texts invariably with a kind of dream place that doesn’t really exist but it sounds like a real place, a kind of poetic location where one resides when one writes a text and think about things but you don’t find back as such on Google Maps. Sugar Mountain however is a real place and if you search on Google Maps you'll come in an abandoned part of the United States, the Great Smoky Mountains in the state of North Carolina, somewhere between Charlotte and Nashville. It is a place where one does go skiing and hiking but where is not really much to do. Well, I don’t refer literally to this geographic place in my signature but actually get my inspiration from and refer to the living legend Neil Young and his song entitled, you guessed it, "Sugar Mountain." And of course this explains a lot, because I refer to the poetry and music of this beautiful song and also the figure of Neil Young himself, who always has been a source of inspiration for me. I give the text of the song you know where I'm talking about.
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The song describes a feeling of aging I myself somewhat recognize and cherish and describes a type of place in your memory and memories, where you would like to go back to, to which you have a certain nostalgia, to the time of your childhood. That's the kind of place, Sugar Mountain then, as in the song, which I love in my head, and from which I write or do other creative things. Of course the song is about more than just this, but I wanted my signature yet equally indicate because I obviously don’t live in the U.S., and because it’s also not my dream or wish to do that. Here are all the misunderstandings cleared out, although I must admit that I myself love the mystique around here that I create myself. About living in the U.S. by the way, I stayed there for 6 weeks for my job in a faraway past and later again for a shorter period. After my personal experience I didn’t want to live there. You only notice how cozy Belgium is, how soft and safe, quiet and calm, small, not so loud, and especially how well protected socially. Although there’s still much room for improvement here. And that’s something that affects everyone, especially those who’re suddenly stricken with a serious disease or condition, or those who become disabled, and in the most extreme case the many ALS patients who can barely move or speak. It is partly for these people that we have this social aspect here with us in Europe. And even because people are helped this doesn’t mean everything is solved, after all it doesn’t covers all costs and certainly never all the pain, but without this support we would end in an American situation where the rich can take care of themselves just fine, but the less fortunate ones are left out and don’t have access to all the resources and facilities that we have. For ALS patients it would mean that in case of lack of money you would have to lie in bed the whole day because all nursing and care is too expensive, and because an electric wheelchair is simply unpayable. You probably can hardly imagine such a situation, and keep it like that, because the arrangement we have here isn’t so bad and should stay the same in the future. Yes of course, if you're healthy, you don’t like to pay for it, but remember getting ill can happen to anyone, sooner or later, young or old, without distinction of race or class. I suppose every slightly older ALS patient has no euro regret about all the social contributions that he had to pay to the state and now is glad that state can help him now. If you take away the social safety net, even if it costs a lot of money, you will see a rise in crime, homelessness and all kinds of situations that are relatively unknown here, while they occur on a much larger scale in other countries like the US. So far my brief plea for any kind of solidarity, the foundation of every community, nation or state. Take that away and you get sub-communities with their own rules and territories, sub-nations within the same state, and sub-cultures that are not always desirable. I have just completed my first contact weekend for ALS patients. That took place in the new care center on the coast. From Friday morning to Sunday evening we were there with twenty volunteers to keep patients entertained and happy. I was looking forward to it, because I was still curious about what it would be like to meet that many patients Besides the photographing and filming, I also make reports for the League, so there were also some personal interviews with patients to be done. The willingness and openness of the patients have honestly surprised me, because I had expected to get more reserved responses from patients when it came to talking about their illness. The feeling of trust that the League offered here will surely boosts the confidence of patients among themselves and also helped, as it turned out during some interviews, to take away embarrassment and shame because everyone has the same here. Because of this the atmosphere could be described as relaxed and even happy. Next to all the setbacks I think I’ve also seen some happiness with the people here. |
Oh, to live on Sugar Mountain It's so noisy at the fair Oh, to live on Sugar Mountain There's a girl just down the aisle, Oh, to live on Sugar Mountain Now you're underneath the stairs Oh, to live on Sugar Mountain Now you say you're leavin' home Oh, to live on Sugar Mountain |
And that's exactly why we’re doing all this, why the ALS Liga exists; to make the life of ALS patients better and more bearable, in every way possible.
And if it works, the I feel better myself for being involved, I get the feeling that I make a difference for others, that I can help to bring joy.
And this is very important to me, perhaps even the only thing that counts for me in my life because of my own life and my own fight against my an illness called bipolar disorder. I have resigned myself to this disease and I try to live with it, day by day, probably for the rest of my days.
You get to see things in a different perspective and learn to value things that really matter if, like me, you’ve had to endure the pitfalls of life.
Well, I think that's also reflected in the majority of ALS patients, people who are forced to think differently about things, such as money, success, career, but for whom the focus shifts to the family, the family, happiness, your wellbeing, your own autonomy, the importance of activities, the fight against boredom, the courage to keep an open mind and a big heart for everything that is and comes and at the same time learn to bear your own impermanence.
Experience would be called something like, life experience, the confrontations with all the limitations, the limitations of your body, the limitations of others and the limitations of your existence. That even from such a difficult situation beautiful things still can come and you can still experience a feeling of happiness, that is the ultimate happiness. I think deep down, that's exactly what man himself finds the most important of what is and what will be, as simple as that.
A certain image of the weekend stuck with me. That has to do with some personal interest points I like to level with the patients.
I like wondering about things, already from childhood. I like to ask myself questions in a kind of thought experiment where I try to imagine how a certain situation in real life would be if I was undergoing it. Not that you exactly can ; imagine how something real is or feel, unless you’re going through yourself or experience it. Maybe it's just why it intrigues me, because the reality of the experience of those things, experiences, feelings, really totally different than how you imagine it. An image that stays with me a lot is that of shifting things, translations of all the values of hope, expectations and feeling good. The picture originates in determining how important today's electric wheelchair is for most patients. You might think or expect that people would dislike a wheelchair, they really don’t like to sit in it. Well, not that they loved to sit in it of course, but you notice during the disease and the associated experiences that, when one becomes more and more paralyzed, leads into a situation where they eventually hardly being mobile and as speak spends all days lying or sitting on the couch or in bed behind the TV screen. They’re rare outside, has few social contacts, and yes, of course, that you’re getting to feel depressed in such circumstances. I can perfectly understand that in this situation the electric wheelchair is like a true godsend. It makes the difference for patients between 'vegetate' (naming it so disrespectful) and really "life" again. One can again go somewhere more or less autonomously and move, with the necessary adaptations in the area, and provided some help and assistance. One can build and maintain back a social life. This is also a shift or translation of the point where one finds his sense of happiness, and that is not the former healthy state, but the height of one's diseased state. And from there it's getting better.
Herein the ALS Liga plays a hugely important role as they can provide people all kinds of help and tools. I can also agree to this state from my own experience with my illness. Not that my life is so great now, but sometimes I'm just happy nothing happens, no manifestations of episodes of depression or manic thoughts, paranoia, or other strange feelings. No, sometimes I'm just glad everything is just the way it now, better than the images and experiences that I carry from the past and are some reference to see and feel the limits, but which I don’t like to think back actively.
In any case, one can come back among people and solve some practical limitations. Just the freedom to go or drive where you want creates a sense of freedom that is in stark contrast to the situation in which one is stranded in their own seat or bed itself. The importance of this aspect is even more complex when you know that for most patients I spoke in their experience the most bothersome to the disease ALS, the high degree of dependence on others in general, but also of their own partner or caregivers. The electric wheelchairs as they exist now are called certainly ingenious and apparently have a powerful psychological effect in patients with ALS. One can thus partially evade a hopeless situation (I sometimes wonder how ALS must have been 100 years ago?) and therefore more comfortable in his skin. The electric wheelchairs make a difference of night and day for the life of the patient. Even though the disease remains severe and the clouds hang always low over the horizon, yet it is a little easier thanks to tools to get through the daily issues. And that's often a lot. How expensive wheelchairs are actually, I do not know, but the amount will probably come close to a small to medium car. I do not know how this will be reimbursed by health insurance, but in fact it should be refunded by 100%, precisely because it’s very expensive and even more precisely because it makes such a big difference in the life of a patient. Also certain options on the wheelchairs aren’t supplied as standard, for example the possibility to move in height, but apparently still very handy to have when you’re less mobile. In fact all other possible options should be refunded. Why not grant certain tools that enhance the comfort of these people?
Our society waste a lot of money on a bunch of nonsensical and useless things that nobody benefit. So much more money should go to research into the causes and treatment of ALS. There aren’t so many opportunities to contribute to the happiness of people, to help, just by material support. Well, here it’s possible, and the return on these investments are huge to me.
I wouldn’t like to overlook the other devices, like the little voice computers and interfaces for computer control. I must say that when I interview a detachable or have a conversion with someone with difficulty to speak or speakless, it’s difficult to talk through a screen on which something must be typed. It requires much time and patience to type something, sometimes they can’t or won’t to type what normally would be expressed in words, what the conversation runs sluggishly. We’re also not used to communicate in this way, talking and reading at the same time. I think it must be possibly to improve a few of these restrictions in short term. I suspect that the technology will soon show some daylight that this form of communication, the transition of the brain or central voice to a digital device, get a pack of simpler, quicker and more normal. Fingers crossed!
About the electric wheelchair than shortly, known as the flagship of the ALS Liga, and also the symbol itself of the disease ALS. I can’t escape the impression that there’s a certain analogy with the car detectable. Especially with male patients, I learned people interested in different models and brands, in all kinds of options for implementing the kind of upholstery, steering. Also the gadgets for mobile and multimedia are certainly nothing to sneeze at. In a certain way it’s exactly how they previously would have done with his car, how fast he goes on, how agile he is, what is the braking force, and more of those things. I find it a very nice observation that people, probably without realizing it, don’t engage in translation here, but rather on replacing. Mentally the wheelchair is takeing the place of the car had before. This effect mainly plays to men is the same phenomenon as boys and technique, something like that ...
And they quickly pull up, I must say, yes, and slowing down perhaps even better. They actually work damn well I think seeing them driving like that. You should of course control it, just as driving a car. Maybe it's also sometimes fun to drive around, and I hope it is, because that's a bonus. In my fantasy I see a picture of the future where people moving around preferably seated in a city or at the office. With a kind of futuristic wheelchairs they whiz along each other going.
An additional aspect of wheelchairs is that they’re electrically moving, so silent, almost inaudible. And therein lies still some danger, especially during a busy contact weekend, collisions. Fortunately, in Middelpunt glass is everywhere in the square concept so you can see if someone is coming. Great they thought to this. Also, the rule of priority of the right is not always known by everyone and equally clear, and there is of course just like on the road, some margin for interpretation. The danger is greater for other people on foot, like me, because we’re not protected by a structure on wheels. Here in Leuven Danny scared me when zapping from behind the corner. Fortunately the brakes faster than I’ve figured, so happily no incidents occurred, as it would mainly hurt our legs.
This is what I get here, but just because I think that one should never lose his sense of humor in any situation. I also noticed during the contact weekend that patients among themselves also have some humor, like about their wheelchairs and actually sometimes quite amusing, but it’s not done to make too many jokes about it when yourself aren’t in a trolley, a wheelchair so, or have ALS. I've been here a glimpse of data, and I do, of course, never mocking, but just to show how this is part of the identity of a group of people with a common goal: to learn to live with the disease ALS. Precisely because it’s so specific to that group of people is interesting, because different from the normal and at the same time somewhere still the same as normal. And that I find beautiful, beauty of people, of man as a social being, which happens in difficult circumstances, and that this also can happen posed by the patients themselves, which nevertheless each one already experienced a lot and eventually are all very well aware of the final outcome of the disease ALS.
It's not fair sir, these people have never done anything. I know, it’s what it is and what it will be, so be it, for now and forever. As Nietzsche would have spoken to reassure himself, and so would I also encourage my twisted thoughts never to lose courage and fight against ALS never give up. Respect!
Tristan Herftijd
Sugar Mountain, September 2013
