Friday, January 20, 2006

The Psychiatrist

Spitting mad. Fuming mad. Rumpelstiltskin mad. Yes, I am one angry girl. I met yesterday with a psychiatrist at my HMO, hoping it might bolster my disability claim. I'm not saying this man was unattractive, but if I found myself alone on a desert island with him I would view him as food. Yes, cannibalistically mad. But we weren't alone on a desert island; we were in a situation out of an Edith Wharton novel, one in which deviations from social protocol were fraught with devastating consequences. Various interconnected bureaucracies which controlled my fate were to be moved by what he wrote down after we spoke. So I strove for absolute decorum. For deference. For compliance. Judge me if you like, but haven't you felt this way toward a boss at some time in your life?

There was irony in the means by which the psychiatrist was provoking my fury. In an obvious, ham-handed way, he was painting a picture of me as a timid person who was projecting my fears onto a benign environment, believing it to be filled with imagined chemical threats. As I was struggling to conceal my rage he was saying, with exaggerated sympathy, " you must experience the world as a very frightening place." I assume he is of the school positing that all patients who believe they have Multiple Chemical Sensitivities are operating under a delusion. I could have told him that I did have a terrible fear of letting slip snide remarks that would provoke him to retaliate against me in his chart notes, but I mumbled something vague that could be taken as an assent.

Before I go on, I should say I went into this appointment with quite specific goals for the psychiatrist's larger decisions, all of which were met. He gave me the diagnosis I wanted, saying I had a low-grade depression, which is true enough. He didn't try to prescribe medication, and, mercifully, he didn't schedule a return appointment. As an unexpected bonus, he let me know of a meditation class I might actually be interested in taking. So, I must have been doing something right, but I was aware that I was leaking hostility at various times.

"Do you have friends?" he asked out of the blue at one point.

"Yes, I have friends," I replied evenly. The tone of my voice said, "You inquire into people's social support a dozen times a day and this is the tactful phrasing you've perfected? Why not ask if I have any friends at all?"

After discussing the meditation class, he asked, "So, how do you feel about what I think?"

"I don't know what you think," I shot back brightly. Between the lines any astute observer would have heard, "Don't imagine I can't guess well enough what you think, you transparent fool."

He handed me a brochure listing the "behavioral medicine" classes offered by the HMO and asked if I'd seen it before. I said, "I can't tell. It looks so generic." I meant, but quickly wished to God I hadn't managed to communicate, "You are indistinguishable from every corporate clone I've ever met."

Yeah, I screwed up, but I wasn't the only one who lapsed a little from the social norm. As I was leaving I commented on a potted plant with leaves that looked like parsley, but that turned out to be something of which I'd never heard. I asked if it was also an edible plant. "We don't eat the aralia, because then it won't grow, " he said, as if issuing a warning instruction, but, strangely, in baby talk. Did he fear his shrinking violet of a patient was going to savagely destroy a living being right there in his office? Only in fantasy, sir (and not the pretty herb). Per the doctor's orders, we don't need to react just because we are aware of a noxious stimulus.

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.

Thursday, January 05, 2006

Two Safe Rooms in Chicago

Until yesterday I was not aware of a room in the United States--outside my apartment--in which I could stay with any reasonable confidence that I wouldn't be made sick by things in the air. I think there is an environmental medical unit in Canada used for patients with Multiple Chemical Sensitivities, and maybe one in Japan. I suspect that some rare books and museum pieces in my country enjoy air quality of which I can only dream. I believe that inventors have created technology in nearby Silicone Valley that would dramatically improve my health; but it is squandered on insensible computer chips, which are not grateful, the little louses, for clean rooms with ten times better ventilation than I've ever known. Two days ago I thought that unless I renewed my passport my genuinely low-risk habitation alternatives were limited to my bedroom, my kitchen, and my bathroom. I can hardly talk about the fears raised by the possibility of hospitalization.

So, who do you think I discovered is a U.S. pioneer in healthy human environments? It's not anybody funded by the National Institutes of Health. (Sorry, but no surprise there.) It's Hilton Hotels. Yes, the revolutionary move has come from an industry generally hell bent on saturating their possessions and air space with chemical deodorizers. The managers have retro-fitted two rooms at the O'Hare Airport Hilton to cater to patrons with allergies and the like. (Press Release) There, in what has to be one of the world's worst concentrations of jet exhaust, they have boldly braved liability nightmares and announced that travelers can now book superior air quality with assurance. May Zeus, Thor, and all the gods of sky, wind, and air rain down blessings upon them.

I can't speak from first-hand knowledge to vouch for the folks at Hilton living up to their promises, but they sound as if they are in earnest. They continuously monitor levels not only of carbon dioxide and carbon monoxide, but of volatile organic compounds (VOCs). They laid hardwood flooring. They clean with fragrance-free products and stock their bathrooms with them. With impressive attention to detail they even purchased wallpaper with perforations designed to prevent mold from growing under it.

My remaining doubts after reading the Hilton spec sheet focus on bedding, which can be the undoing of the most meticulous air quality scheme. With one king size bed the Hilton designers are facing not just one princess likely to detect a pea, but a steady stream of delicate royalty with their many and varied intolerances. Hilton has decided upon natural cotton bedding. Most people with Multiple Chemical Sensitivities will be glad to hear it. I personally once had an unpleasant lesson on the allergenic properties of a particular type of cotton fiber that is often used in batting, cotton linters. Also, I've heard cotton production is particularly pesticide intensive, and the bedding isn't described as organic. Still, the publicists at Hilton have convinced me that the hotel knows what it's doing.

I can't say the O'Hare Airport is an appealing vacation destination, particularly in January, and the price is a little beyond my reach at $249 per night for a single occupant. However, I'm excited. I can fantasize about a trip not ruined by anxiety about accommodations. Hopefully the idea will spread--maybe one day even to my local hospital.