Saturday, January 14, 2006

Resting without Laurels

Recently my chief coping strategy for psychically surviving the rigors of an acute phase of Multiple Chemical Sensitivities has been an aggressive one, but this last week a reminder of an entirely different approach arrived in my mailbox. Lately, I have been engaged in bulldogging minor bureaucrats at social service agencies, attempting to read the scientific literature--all of it--on MCS, and battling my HMO for recognition and treatment of the illness. Taking the struggle further, I have joined groups, fired off letters to the editor, started a blog, and manned an information booth in my respirator. My fantasies about my future effectiveness as a crusader against the chemical industry reached such proportions that I put the movie Silkwood (about a whistle-blower at a nuclear power plant who died mysteriously) on my Netflix list so that I could see what I might be up against. Granted, some of this activity has been necessary to my physical and financial well-being. My effort has made me feel less powerless, less isolated, and less irrelevant to my society, but some of it has been on the compulsive side and harmful to my health.

I don't want to reproach myself; it's not always possible to keep one's footing in an earthquake. Still, I was glad to be able to latch onto a newsletter article that seemed to be steering me toward a change of tactics. It invited me to just quietly experience the truth of my situation and acknowledge myself simply for bearing it. In it, Malka Weitman, a local psychotherapist, talks about our culture's standard response to those sick and in pain and how poorly it meets their real needs of other people. She indicts the professionals--handily represented in caricature by Dr. Phil--who institutionalize this response and outlines a course of action based on an essentially opposite set of assumptions. As I read, I realized how much I had put an internal version of Dr. Phil in charge.

Weitman observes that most people are made uncomfortable witnessing pain and vulnerability. This is particularly true because when other people succumb to illness and disability our illusions about our own security in our bodies is threatened. The response often becomes a negative judgment about the patient unable to overcome illness and injury or to do so on a given time table. She writes: "...the tendency to assume people are dwelling on their physical limitations, and overidentifying with their pain instead of focusing on the positives in life, is a way of making ourselves--not necessarily them--more comfortable."

Weitman labels Dr. Phil's approach as the "get over it, get on with it" attitude. I feel exposed to it on nearly a daily basis. An old acquaintance learns I've relapsed and asks cheerily what else is going on. Friends pressure me into activities that make me worse, thinking my problems stem from lying around the house. Any improvement is seized upon and any downturn ignored. Doctors warn against letting my condition interfere with a "normal life," seemingly in the dark about the definition of disability. At times I've bitterly decided that inquiries into my health were most safely answered with the word "better," delivered in a considered, upbeat manner. (It's true in some sense, unless I'm worse than I've ever been.)

Weitman suggests that those who are sick and in pain need time and empathy in coping with their experience, which is of a traumatic nature. She points out that judgment and denial exacerbate pain. I know I have an urge to try to force someone to "get it" when I meet with encouragement to move on or focus elsewhere. This can be a vicious cycle in which the other person then renews the effort to get me off the griping and onto something more "productive." Real empathy, on the other hand, can move me quickly to tears and even make me want to change the subject.

Now it feels as if I should know all this, being a therapist myself, but there was another, more novel, angle in Weitman's piece. She speaks movingly of the dignity and value of enduring suffering as a part of life. She offers the radical perspective that illness and pain have inherently equal worth in comparison with other life experiences. They are not something to be ignored, or conquered and then forgotten as quickly as possible. You are not stuck, or dwelling on the negative, if you take time to acknowledge their enormity and wrestle with finding meaning in them. Awful experience is something to be lived as much as anything else, and, hopefully, to be lived well.

As I'm relating it, her points seem open to misinterpretation. I'm sure she is not giving a trite lesson about collecting a take-home message for future use (you know, as long as you are going through hell). I have a colleague who is always right on the job of interpreting the universe's cryptic educational directives in any misfortune. If your car were stolen she would be sure mysterious forces were leading you to spend more time at home. Nine times in ten sickness can be boiled down to a pointed moral lesson about self-care. But Weitman isn't boiling things down; she's opening them up in all their richness and complexity.

Similarly, it's clear she's not holding up the model disabled person as an example to us all. As I read I felt no pressure to be stoic, grateful, or self-sufficient. On the contrary, I felt that I was doing something of value just in being present and alive to the reality of life with MCS. Now I can't claim that I've ever erred in the direction of stoicism, but it seems that on some level I have been measuring my worth in terms of productivity, determined to behave as if I were healthy. Since I read Weitman's respectful and compassionate words I've been softer with myself, taking time to meditate and let fearful feelings arise and pass. I've been more aware of underlying shame and guilt about being sick, unemployed, and dependent, and I've tried to embrace the vision that finds dignity in such a life.

Malka Weitman's article, entitled Working with Physical Pain and Illness in Psychotherapy, was originally published in the January/February 2006 issue of The East Bay Therapist.


Lynn said...

Hi Avenger, I am so enjoying reading your honest explorations of your situation and can relate with so much of your thoughts.

Sometimes being a Toxic Amender means focusing on one's own life with MCS in an attempt not to fix or overcome, but in a whole-hearted openess to relearn one's value in having a new self identity and awareness.

Can I put a link to your blog on mine?

The Masked Avenger said...

You're asking me, little ol' me, if you can link to my blog? I'd be thrilled. I've been feeling like I'm ranting to an empty universe (although enjoying myself in the process). Thanks for your kind words.
Masked Avenger

Lynn said...

Thanks! I'll add it today. Ranting to an empty universe. Know that feeling well. Just know I'm reading you and following your life through this blog.