Friday, December 23, 2005

To a Fellow MCS Sufferer

There you stand, with or without your protective face mask, explaining yourself. You are telling some man as nicely as you can that the way he smells makes you sick; or, you are letting some woman know as politely as possible that you are reacting violently to her perfume. Are you hoping this is going to go well? Do you imagine that this time the poor soul in front of you will pause and reflect on the implications of what you are telling him? Are you thinking she will consider what conclusions might be reached if she entertained the hypothesis that your perceptions are entirely accurate?

Perhaps he will turn to you as a source of information about the toxic effects of his fabric softener. Maybe she will be inspired to research the governmental regulation of perfume ingredients. (That's a short project after all.) He will become a radical environmentalist. She will develop a career as a consumer safety advocate. At your next encounter you will breathe in only his or her musky human odor and be irresistibly drawn into a passionate embrace.

As you know, back in reality, it is more likely that your fragranced friend will feel the need, perhaps unconsciously, to take a verbal shot at you, the proverbial bearer of bad news. People who think they've been told they stink may not connect all the dots right off the bat. I am sorry for the many word bullets you have had to dodge, in addition to the chemical assaults, being a victim of Multiple Chemical Sensitivities. However, you are a uniquely challenging messenger, carrying a message with unwelcome depths, and should expect to take some fire.

It's true there are an abundance of other messengers bringing similar ominous warning: dead fish washing up on beaches, kids sucking at inhalers, unlucky towns with far more than their share of cancer patients. Yet you are different. Unlike the doubly silent fish messengers, although they are eloquent in their way, you can talk. Further, it is harder for a healthy person, try as he may, to regard himself as being so vastly different from you as he regards himself as being from a fish. If I may digress, let me say that if you look at yourself through others' eyes I know you may feel at times like a talking fish. You may feel like a talking fish from another planet who is wearing a protective face mask. I am so very sorry and even if this illness has driven you completely crazy I still recognize your humanity. Anyway, my point was, fish present less of a challenge to the comfortable assumptions of your fellow humans than you do.

The asthmatic child tugs more at the human heart than fish, but still she is relatively voiceless and easy to ignore. Artificial fragrances may affect her breathing, but she's got her inhaler after all. (Thank God for modern chemistry.) She's also more likely to live in a poor neighborhood than an affluent one, contributing to the illusion that her message is not for those with means.

What about others affected by environmentally-induced or environmentally-exacerbated diseases? Often there isn't anything we are asked to do about them directly, in the immediate present. The cancer victim can account for himself without implying that an unaffected person could work on getting the local factory shut down before they meet again. The listener is not confronted with being part of the problem.

But there you stand with your MCS, declaring that you have been stricken ill by the collective hand of man, and that you would like the person in front of you to recognize it and take corrective action--action they might prefer not to take. You may not relish this role. If you are the type who really hates to be a bother you may ask only that she not take offense at your desire to keep a healthy distance. If such is your nature I hope you are not living quietly and invisibly in isolation. I hope you can band together with like-minded souls and form a fragrance-free, non-toxic haven. (I envision a sort of secular Amish community.)

However, if you have a greater sense of entitlement it also seems to me a noble path to continue as a thorn in the side of the general public--not that you necessarily have a choice. Your participation in society is arguably more valuable than people's right to exude toxic chemicals, and, certainly, in my book, to profit from their sale. You have an urgent stake in reordering the consumer society's priorities. So, truly, does that person smelling sweetly of benzyl acetate. You can consider yourself chosen to let her know. Plant a little seed as you are ducking for cover.

Sunday, December 18, 2005

The Neuropsychological Evaluation

Being referred by a doctor for a neuropsychological evaluation can't ever be a happy occasion. In my case there were layers of confusing unpleasantness. First of all, having my IQ pinned down was something I'd escaped for 46 years. My family, that supremely formative influence, was not in accord with the late Duchess of Windsor when she voiced an opinion on the impossibility of being too rich or too thin. (If asked they'd say I was always too thin, the Duchess of Windsor undoubtedly too rich for her own good.) What you could never be, in my family, was too smart. If you hadn't won a Nobel Prize or a MacArthur Genius Award you were in one of two categories: a) still showing potential, or b) failing. I knew my IQ had never been what was hoped for and now I had to face directly the possibility of brain damage.

On the other hand, if I couldn't demonstrate some cognitive incapacity my options for financial survival looked grim. Eight months ago my chemical sensitivities had gone nuclear--shooting squarely into the "good luck getting anyone to believe you" range--and I hadn't worked since. The aforementioned family doesn't value sanity, sobriety, or happiness as much as it values intelligence and I dreaded turning to them. My boyfriend's generosity, strained as it must be by the ordeal that had become ours, was the thread by which I hung. I had applied for disability payments through Social Security, but I knew my case would be difficult to prove. My primary symptom was a frightening and debilitating brain fog that wasn't likely to be imaged by a scan. Nothing in my blood or urine suggested crippling impairment. A favorable neuropsych, that is, one guaranteed to shake my self-esteem, was my greatest hope.

My primary care physician, Dr. R., has been something of an agnostic on my diagnosis, Multiple Chemical Sensitivities (MCS). After years of playing her cards close to her lab coat she finally wrote all three words together, in order--after being backed into a corner by a form demanding a diagnosis. It was the first time she had capitalized anything and then only the word "Multiple." She stipulated, on the form, that I might be able to get back to work at any time. Privately she let me know that she was only going by my account, implying that she didn't necessarily believe a bit of it. This is not the doctor you want on your side when facing the Social Security Administration, which takes your word for nothing. Still, at my HMO, she's the best I've encountered. As an institution, it has no use for controversial diagnoses.

Aside from internal conflict as to whether I wanted to be found smart or dumb, there was the issue of judgments being made about my mental health and those judgments being entered into my medical records. Dr. R., when pressed for a rationale for the testing, had mumbled vaguely about finding out what role depression or anxiety might have in my symptoms. The big chief of Allergy had tactlessly thrown out some hypotheses closer to the psychotic end of the emotional-disturbance spectrum. I knew they were both just shooting in the dark, and perhaps hoping I'd become someone else's problem. From a survival standpoint my greatest fears were that I would get formally labeled as a malingerer, or, more likely--given my reflexive, tedious, kamikaze honesty--as a hypochondriac. Either could be the kiss of death for a Social Security application. From the personal vulnerability angle I knew that things might be written about my personality that would have sufficient truth and authority to sting. I had been given some training in conducting neuropsych assessments and hadn't liked the whole endeavor from that side either. If felt intrusive, impersonal, authoritarian, and, surprisingly unscientific.

Given the fears and risks I decided to hire myself a sympathetic psychologist for my assessment--or, more accurately, ask my boyfriend to hire me one, the price tag being $1800. No one is ever neutral on the question of MCS, unless they are ignorant about it, and I wanted neither a naif nor a skeptic probing around my psyche, determining my fate. I chose an examiner with impeccable credentials, one who was also a champion of MCS patients. She turned out to be a charming, diminutive, sweetheart of a woman. She palpably disliked the prying portion of her job and kept it as brief as possible. Her natural warmth overcame any restraint in which she may have been schooled, which suited me completely.

Major problems remained, however. Whatever permanent brain damage I might have incurred, as painful as it might be to confront, it wasn't what prevented me from working. The disabling part of the problem occurred temporarily when I was exposed to things (perfume, mold, magic markers, Xerox copies, etc., etc.), especially when I was exposed consistently over time, when it got a little less temporary. Since the catastrophe eight months back, through making lifestyle changes bordering on the absurd, I had gradually put together hours and then entire days of clear-headedness. The near-normal use of my brain and a semblance of well-being were my most precious possessions. The last thing I wanted to do was run myself back into the ground toward the end of proving I had a problem. Avoiding any further permanent brain damage had to remain the prime objective, however inconvenient it might be.

I had the impression through the grapevine that the psychologist did provocation testing--deliberately impairing people with inhalants to which they reacted and then putting them through the drills. When I asked about it, she said that she had twice allowed people to try this on their own volition. The second time a woman had inadvertently given herself an epileptic seizure by spritzing some perfume. That was the end of provocation testing, or at least the psychologist's endorsement of it. I was relieved to hear it.

However, as the testing progressed I feared she didn't have any other magic for teasing out the complexities. I deteriorated while in her office and thus scored lower on tests given late in our sessions, regardless of the functions and and skills they were designed to measure. How could there be any accuracy to the results, I wondered, if there was no way to track or quantify this shifting variable? Also, it seemed that even while feeling drugged and struggling to keep track of which test item I was on I might still be pulling down at least average scores. I mean the highest office in the land was held by a man who seemed barely able to navigate his way to a podium; could I really claim on the basis of my performance on these tests that I couldn't work? I feared that short of falling into a coma I might test too well.

Despite my worries, the psychologist thought she had gotten reasonable data and seemed to believe my story. We discussed whether she should administer a personality inventory.

"Why should I give you a test normed to psychiatric patients," she reasoned, "when you're perfectly normal and healthy?"

"Well, yes, of course," I thought, with this anti-climax, but something I couldn't put my finger on felt odd. Later I realized that this was an unusual instance in which I was being evaluated by someone of whom I could say the same.

Wednesday, December 14, 2005

Dr. S. vs. The Masked Avenger

I recently found myself in a reckless argument over the phone with a doctor I'd never met. We were arguing over a diagnosis that I have believed for ten years applied to me. The argument was not so much about whether the diagnosis applied to me in particular, but whether it applied to anybody. The doctor was the highest authority my HMO, Kaiser Permanente, had to offer on the subject and it was refusing to allow me to see a specialist outside its walls. As it happened, the doctor was a woman with a rather thick Slavic accent. She seemed to miss the point of the more nuanced communications I attempted, but in the end I'm sure the barriers to our understanding had nothing to do with language.

Honestly, I liked Dr. S. for the direct simplicity and emotional engagement she brought to the table. She was refreshing in comparison with the standard-issue stuffy whitemale of advanced years who had written "this is not a proven entity" in my medical chart at the local facility. I was glad to know that she had triumphed to become a "Chief of Chiefs" in the Kaiser allergy world while he was only the leader of a small enemy band relegated to treating denizens of the inner city. He would never have had it in him to concede amiably, as she did at one point, "You were right, I am not your friend." I felt she spoke not just for herself but for the American Board of Allergy and Immunology, whose authority she invoked more than once.

The diagnosis over which Dr. S. and I were pointlessly arguing is Multiple Chemical Sensitivities (MCS). Somewhere around 4% of the general population report that their lives are seriously disrupted by abnormal sensitivities to molecular and particulate substances that we all breathe in on a regular basis. (New prevalence estimates) Currently, some of my least favorite inhalants are perfume, mold, smoke and diesel exhaust. I dislike synthetic chemicals, perhaps partly on principle, more than naturally-occurring substances. However, I can't live in a musty old house, or one shared by a cat, any more readily than I can live in one that has the "new" smell of volatile organic compounds wafting off its surfaces. Often the illness is initiated by an exposure to a toxic chemical. My original trip through the looking glass followed a roommate's use of a spray pesticide, Raid Flea Killer, that she had picked up at the grocery store.

One of the reasons many doctors can't accept the concept of MCS is that sufferers describe having debilitating symptoms in response to extremely low levels of airborne irritants--levels far below those considered safe. Out of their sympathy for me, most people I know relate some personal experience of intolerance to chemicals. Someone at their office wears too much perfume or they can't stand to drive behind a bus. While I appreciate these attempts to understand, and while good air quality benefits us all, my experience since I became ill seems qualitatively different. When I'm at my worst, catching a whiff of the most discretely applied perfume can feel like being dunked in a vat of it. I'll get an instantaneous headache. If I don't get away from the stuff I lose focus and get disoriented.

Dr. S. herself gets a little fuzzy at the office as her day wears on, something she attributes to less-than-stellar air quality there in the Allergy Department. She can "tough it out," a strategy of which she suggested I make more use. I think of this as the "just get over it" approach. It is the polar opposite of the strategy of avoidance, which people who have MCS overwhelmingly report to be the most effective treatment for lowering their sensitivity. (Treatment comparisons) If I tough it out one day I'll be more easily set off the next. If I tough it out for a week I may wind up with round-the-clock symptoms and reacting to everything under the sun. The recovery process is slow, unpredictable, and, so far, always incomplete.

I don't believe that the lack of a well-understood physiological basis to MCS is the primary impediment to its recognition by portions of the medical community. A thornier issue is the subjective nature of the illness. There's just no test available to prove someone has it, at least at this point. I look reasonably healthy, if a little pallid and skinny. Related health problems, like osteoporosis, might not, in fact, be related. Who's to say I'm not making it up or that it isn't all in my head? What's to keep healthy people from claiming disability benefits or redress for discrimination, or from seeking unnecessary health care or workplace accomodation? While I can testify to the fact that there is ample disincentive for anybody, sick or well, trying any of those things, it's still a legitimate question.

Now the task of pronouncing a patient delusional or fraudulent is generally left, in the end, to a psychiatrist or a psychologist. Subjectivity is the nature of their business. A wide variety of theories of psychological causation for MCS has been advanced in the scientific literature by eminent people. The theories are often in contradiction to one another and all are countered by theories of physical causation advanced by equally eminent people. The backing of interested parties with money, notably the chemical and pharmaceutical industries, tends to favor the former and the somewhat more limited resources of the patients tend to favor the latter. (Chemical industry expose) Dr. S. floated the idea that I and my ilk might be "paranoid" and touted psychotherapy (not that Kaiser was offering me any).

I'd seen the writing on the wall and abandoned the local allergist before he had gotten around to such a conclusion, but with Dr. S. I foolishly charged ahead. I argued that far from being resistant to psychotherapy I had derived great benefit from it and, in fact, had become such a fan that I was now a psychotherapist myself. Could it be that I had chemical sensitivities in addition to whatever neuroses afflicted me? Dr. S. suggested, in a patient tone, that therapy often went better for people if they didn't try to perform it on themselves. I struggled to correct this misimpression, lest it wind up in my record, but I gave up arguing for my open-mindedness, or, for that matter, my sanity.

Citing the scientific literature generally proves equally futile in these situations, but I still couldn't let things rest. I recommended to Dr. S. that she look into the most scholarly book on MCS of which I'm aware, Chemical Exposures: Low-Levels and High Stakes by Nicholas Ashford and Claudia Miller. (On She had never heard of it and lamented that patients sometimes located books in health food stores that could be misleading. "The Journal of the American Medical Association recommends this book," I argued as Dr. S. angled to get off the phone. I can't blame her if she doubted this last point. I'm sure she knew, as did I, that the American Medical Association was not my friend.