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And sometimes I worry about the CPSF generating coverage….

July 16, 2012

Yet another of the many offerings in the unsung video genre: “Dachshunds stuck in sweater sleeves.”

This was the headline running in the sidebar of the Daily Beast, next to the article about the LIBOR rate fixing scandal




Now admittedly, we at the soon-to-be Central Pain Syndrome Foundation, Inc., are determined to make the story of CPS known by more people, and certainly longer-lived, than a video of a dachshund in a grey wool sleeve. (Don’t worry; Oscar gets free.)  We want to get more attention than a dog video. We even want to get more attention than a cat video on reddit. And we believe that we can get it.

But I must admit that the headline made me wax philosophical. Do people have so much time to waste that they would use some of their life to watch a minute or more of Oscar excitedly trying to please his masters, as they keep calling him to come to them, while he can’t see them eluding his attempts to reach them, and laughing at his predicament.? Well, I obviously watched it, or how could I tell tell you what was on it?

When you have CPS, you have a mixed attitude towards living a long life. As a far better writer than I could ever hope to be has said it, “Like anybody, I would like to live a long life. Longevity has its place” There is, quite frankly, so much to live *for*. Pain, debility health and fiscal concerns all make the present sometimes seem bleak. But I no longer have the desire or the impulses towards self-murder. I am fighting to stay alive as  long as I can. But  there is fear in the uncertainty, because of the mystery as to the cause of my first stroke (see the way I think?), and what can be done to treat my collagen disease (which may be why little blood vessels in my head blow up under high blood pressure) Of course, it’s not like I have any health coverage, or could afford to treat whatever is wrong with me.

So CPS patients *want* to live, desperately –  just as desperately as they want to live without the analgesia dolorosa. But do we really want to spend a minute of the span that we have left on a dog-in-a-sweater video? Of course, there may be some laughter or happiness evoked from the video, a momentary diversion from the constant buzzing of the body – and God knows we depend on diversions to keep our minds off of “it.”

But I also have to ask, “Why would someone without Central Pain Syndrome spend a minute thinking about it?” It’s certainly not fun or amusing. It doesn’t being a smile to your face. Actually, I’ve seen the look that it beings to people’s faces: anguish on the sufferers’ and repulsion on the non-involved. What would make you care about Central Pain Syndrome? About the life of someone who has it? About hundreds of thousands, if not millions, of people suffering from it? Perhaps you read this blog, and spend your precious minute or more of life, because you have CPS. Perhaps you love someone who has CPS. But what makes the game worth the candle?

What do we, the CPS patients, need to say in order to get the rest of the unpained world to care about us? It is obvious that for some people, such as my sister, it is much easier to live in a world where you don’t have to think about such diseases. What are the chances that an average American will get CPS? Honestly, I have no idea. It’s not like I have scary statistics about smoking, the way that the American Cancer Society does. Everybody has pain, especially nowadays. What would make people care about other Americans with CPS, when there are so many other suffering people in this country, who are in agony, mentally or physically or both, through no fault of their own. It seems as if our country doesn’t have enough money to help the blameless, much less those who are in any way culpable for their misery..

So I believe that CPS can achieve notoriety, as in becoming “the Disease of the Week.” There is an ever more ravenous maw of popular culture that must be satisfied. Its metabolism has been sped up  by the internet so that it might as well be a hophead. I have no fear that any media that makes a headline out of “Dog in Sweater flops around like worm.” will ignore a more pitiable and grotesque tale when it is presented with one. But notoriety will not help us. Enough money to fund better treatments and cures will. How can we overcome the horror that makes so many people turn away when they hear about the true affects of CPS? How can we reach the hearts – and obviously, the wallets – of so many people that have never <em>heard</em> of CPS as of yet?

Finally, what would you, beloved reader, like me to write about in this sometimes-chronicle of a life with Central Pain Syndrome? What makes it worth spending minutes of your life to read this?

One Comment leave one →
  1. byakushin permalink
    February 25, 2013 1:33 PM

    I don’t have CPS and am not in pain; I ran into it through respecting someone who turns out to have it, and read it because it’s interesting. The magic of Facebook links.

    What in the blog makes it worth my minutes:

    1) Being educative, providing me with new information.

    Various things like where does this kind of problem come from – sometimes pain is psychosomatic, sometimes it’s a standard physical complaint like a muscle/bone structure problem, sometimes it’s, say, fibro, sometimes it’s the side effect of something that could have been lethal (like a car crash), sometimes it’s something completely different. Why are so many good people in continuous pain? Can this one be affected somehow? Are the different ways of suffering pain different?

    2) Having a human touch.

    It’s not just about the technicals, it’s about a subjective experience of something that’s different from mine. So it’s new information, again, but from the point of view for the psychological and social effects of the pain.

    3) Because here’s also a cause someone believes in.

    And it’s a vision that I can on a high level agree with even if I don’t quite understand the politics going on. I linked this blog to someone else yesterday, and that was actually before I read the visibility post.

    I was going to say it also makes me feel like my problems are smaller, but when I think about it, it’s a side effect. I generally don’t seek out comparably larger problems to cheer myself up, I’d much rather use a bit of escapistic fiction involving a mission greater than life more than misery for it.

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