Dec 202010
 
Purposeful studio chaos.

I threatened to someone that I would post a picture of my work table. Now I’m getting around to it.

Along with it, some background. It’s been an interesting time. I have a show coming up next year, and need to be productive in the studio. I also have been dealing with health matters that make that difficult. I used to spend a lot of time cutting paper and creating intricate collages. Over the last decade or so, it became impossible to continue doing that.

Getting a diagnosis has been a long struggle. One neurologist years ago told me that my problem was that I was an artist. He informed me that the same “fantastical imagination” that allowed me to create my artwork would lead me to have “a fantastical interpretation of my bodily sensations.” This neurologist also, by way of emphasizing how funny and crazy we artistic types are, told me that one of his patients was the musician and painter Don Van Vliet, popularly known as Captain Beefheart, who, incidentally, lived in my small town and died just a few days ago at the local hospital. To emphasize his point, the neurologist, while laughing, impersonated Don’s distinctive Multiple Sclerosis-related movement difficulties with what I’m sure he thought was a comic flourish. I didn’t know Don, but had heard that he had a reputation for fiercely defending his privacy. We wild and funny artistic types.

I was also told that I’d caused my painful problems myself through my artwork (too much fine hand motion, even though I had other symptoms that clearly had nothing to do with my arm pain). I am now careful to avoid mentioning art to medical people, lest it bias my care.

I could spend several web pages detailing cruelties from doctors and others. A friend once laughed at me and made it clear she thought I was a contemptible hypochondriac. Others haven’t said it to my face, but I suspect they’ve thought it.

This past week has been bittersweet. I finally found a decent specialist out of town. I now have a name to put to this (it’s basically M.S.). It’s degenerative, but the decline won’t be all that quick. But I can shelve any fantasies I might’ve still been harboring that things will get better.

I recently started a new medication that has helped with some of the more distressingly mind-numbing symptoms. A few days after starting it, I had a sudden urge to pull out some of my old collage things, including a little 4 x 6″ picture I hadn’t worked on in almost 6 years. The picture above is my chaotic worktable when I had it out. It was wonderful to be immersed in my old work again. My recent trip put a damper on my stamina, but I’m hoping to get back to it. I’ve also been working on some book-related projects (pictures to come).

I’m always torn over how much I should post about medical things. There is a sense that one should maintain one’s privacy, and other people’s medical problems are boring. On the other hand, I don’t like that vague feeling of stigma. Being ill or having a disease isn’t a source of shame. I’ve also long been using my experiences with the medical establishment as creative fodder. I can’t pretend this aspect of my life doesn’t exist.

Product of creative fodder?
(As I wrote out those last few lines there was a sudden massive flash of lightning and a thunderclap outside the window. A sign?)

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  5 Responses to “My Fantastical Imagination”

Comments (5)
  1. I despair when hear these stories of the arrogance of the medical profession. They are so SURE that they have ALL the answers, and when they don't, they mock you. I'm really pleased for you that you have found a supportive doctor, who has been able to provide some answers, albeit not the ones you might have hoped for. At least this provides some degree of certainty, a foundation to move forward from.

    I've been reasonably lucky with the doctors I've consulted, but I did have a very hurtful experience when an ex who was a doctor asked me with raised eyebrows "So what's it like to have a disease no one believes in?" And this from a man who had claimed 5 years earlier he wanted to marry me! A lucky escape, methinks!

    I agree there is a benefit to sharing these experiences of chronic illness online. It helps others in similar positions to know we are not alone, and possibly more importantly, it helps the non-ill (as I like to call "them") to be aware and understand. Thanks for bravely sharing this private aspect of your life.

  2. Thanks Amanda. Much appreciated. I know I've definitely found encouragement from you sharing your experiences. That is partly what has made me more brave about writing about my own situation. I've come to realize that it does help other people to talk about these things. My regular doctor up here has actually been supportive, but he's been the exception. It's been frustrating for both of us that the specialists I've seen have mostly been so very unhelpful and patronizing. I wasn't kidding when I said I could fill multiple pages with unpleasant doctor encounters.

    What a sad and frustrating story about your ex. I'd hate to think what he thinks of some of his patients. A lucky escape, yes.

    Take care.

  3. Good to hear that you found a good doctor, and that are feeling better with a new medication. I wish you that with a name attached to your illness, it will be easier to help you.
    And it looks like we will all benefit from you feeling better, if it makes you more productive and gives you such productive and creative burst – I just saw your "bed", and I am still impressed.

    Your studio table looks indeed chaotic compared to mine. Reminds me strongly and pleasantly of my grandfather's studio (he a painter).

    All the best!

  4. oh, and I made similar experiences with doctors, by the way. When I told them in the past that I was a mathematician, they usually concluded that I was all brains and felt disconnected from my body. I learned quickly not to mention my profession, too.
    Sad that it seems hard to get a decent diagnosis without silly judgment about irrelevant things…

  5. You're so kind Buechertiger. Thanks! A friend of mine who was a sculptor and liked clean lines and space once actually broke out into a sweat sitting in my studio and had to go outside. It caused him panic. I still think it's mildly amusing. Your grandfather sounds like someone after my own heart. I must admit, though, this sort of activity is ok for things like painting and collaging, but not so good when bookmaking. I struggle to keep my work table with the cutting mat clear. Let's just say it's a constant struggle…

    As for comment number two, I am completely blown away. You can't win! Either you're seen as neurotic and too connected with your body if you do something like art, or you're too intellectual if you work with numbers? Unreal. I also had a doctor once tell me that he "didn't believe in the medical model of pain" and that I just needed to develop some sort of spiritual practice and take more walks in nature and my physical pain would go away. I don't know what it's like in Germany, but here in the US you then get sent a big bill to pay for opinions like that. As Amanda noted, they are so sure of themselves, and if you don't fit into what they have in mind, then obviously the problem is a character flaw on your part. Sad indeed.

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