Illness as Metaphor, or Befriending the Enemy

31Mar07

Without the imposed structure of work or school,

there are times when I forget everything I love about my life and buy into the societal belief that a lack of structure equals incompetence, laziness, and worthlessness. I’ve worked very hard to move away from this negative belief, and to realize that whatever I am excited about, whatever makes me momentarily forget about FM and dysautonomia is worth pursuing. This leads me to a string of cliches, all of which, however, are relevant: who are you living for? follow your bliss, etc.

My health issues add another element to the search for what I want to “do.” It becomes harder to clearly look inside myself and know what direction I want my life to take when my health issues limit the possibilities.

I used to want very strongly to be a neuropsychologist and work with children on the Autistic spectrum. While I am still deeply fascinated by Autistic disorders, the classes/degrees required to get to that point are currently out of my reach, not to mention the fact that even a part time job (especially in a situation where I could get physically injured) is currently too much for me. Also, my very brief stint at the Lovaas Institute showed me that not all Autism treatment is equal or in agreement with my philosophies. Despite its successes, I know I never want to have anything to do with ABA (applied behavior anaysis) or DTT (discreet trial training). I’d really like to learn more about Floortime techniques, as it sounds more like the kind of treatment I’d like to be a part of. Some Austic individuals who have undergone ABA have written about the negative impact it can have. Here’s one such person disputing the neutrality of wikipedia’s entry, complete with an excerpt from his autobiography. Jasmine Lee O’Neill (who I mentioned in an earlier post) is also Autistic and anti-ABA.

Okay, thus ends the Autism tangent.

Although I’ve had FM for years, obviously I still struggle to integrate my old self and goals with my current reality. Although I realize it directly contradicts what I’ve written in the previous paragraphs, I try to think of FM and dysautonomia as opening up possibilities in my life as opposed to limiting them. Every legitimate treatment plan I’ve come across emphasizes this paradox in some way — that FM/chronic illness will derail your previous assumptions about your self, your plans, your daily life, but the only way to successfully live with it is to fully accept that everything has changed, and to adapt, make new plans, to move forward without dwelling on regrets, resentment, disappointment.

Here is Robert Pepperell’s painting “Paradox:”

http://robertpepperell.com/

For me, there is a huge difference between knowing this intellectually and believing it emotionally. I’ve come a long way in the last year and a half or so (with the help of my therapist who has sadly since moved) towards truly accepting my chronic illness and changing my life in ways that help me. I used to view FM as a separate entity, something I was always fighting against, always hating, always trying to act like I didn’t have it. This attitude, which felt like strength, like “not giving up,” actually made my symptoms and my emotional state worse.

Now, more and more often I’m able to see my chronic illness not as an enemy but simply as the state my body is in, as something that I need to help it with. My body and I are friends now (with an occasional spat or misunderstanding, but these are present in any friendship), and I’ve started listening to it and adapting my behaviors in response.

I used to want to tread upon the neck of FM (and by extension, my own body) like Naram-suen trod upon the necks of his enemies:

But now my body and I are

In the past, if I was engaged in something and my body complained, I would ignore it and continue doing whatever it was I was doing, because I thought that kept me from being weak or letting the illness “win”. I think it was also because I didn’t want to look it in the face, to accept what I’d lost and to start the hard work of finding a new life. I’ve met many FM sufferers who share this maladaptive view, that pushing their physical limits and ignoring the symptoms is a way of “fighting back,” of not giving up. I’m incredibly glad that it didn’t take me longer to shed this way of thinking.

In honor of this post, I’m going to begin reading Illness as Metaphor by Susan Sontag. I started this text a few years ago, but I think that at the time I was still judging myself from the standpoint of those metaphors, and I wasn’t really ready to emerge from them.

Filed under: Health, art, books, dysautonomia, fibromyalgia, literature, pain, sleep   |