I knew my life had taken a turn for the weird when I found myself bedding down for the night in a friend's bathtub. The fact that I was wearing a gas mask at the time added to the surreal quality of the experience, but at least I was warm and out of the winter wet. In fact, this particular bathtub had a lot to recommend itself: namely, that it was located in neither of the houses where I was currently paying rent, yet not inhabiting.
As my personal fetishes do not happen to include throwing money away while engaging in unusual nighttime behavior, perhaps I should explain that the reason for this admittedly bizarre scenario was actually far stranger: When I tried to take up residence-in the houses, not the bathtub-I had been sideswiped by such agonizing pain that I was living in a constant state of sleep-deprived panic. Even the unforgiving hardness of the tub's enamel surface felt comparatively comfy-or was at least a known form of discomfort.
For I was in the midst of a waking nightmare in which my normally neurotic-in-a-goofy-kind-of-way life had suddenly been transmogrified into an episode of The Twilight Zone. I had suddenly become allergic to virtually every house in Ventura County, where I was living (or trying to live) at the time. How can a person become allergic to a house, you may well ask? I still don't have a definitive answer to that perfectly reasonable question, but this story is an attempt to make some sense of the black hole into which I fell three years ago and out of which I am still climbing.
(Note: I was not trying to live in the two above-referenced houses simultaneously, but had rented them in such quick succession that I was still paying off first, last and security deposits on both. Such was the level at which I was functioning. I'm not even going to discuss my relationship with my checking account.)
The story, then, goes something like this: I rented House One. It duly received a coat of paint. I moved some stuff in, unpacked and went to sleep.
I woke up a few hours later and knew I had died but was somehow regrettably still alive to tell about it, as some sadist had obviously crept in during the night and driven sharp but invisible metal stakes through my skull. My head was pulsating with more pain than I thought the human frame could physically bear. My heart was attempting to leave my body the hard way, and my brain was attempting to barbecue itself and perform a meltdown at the same time.
In a daze, I ran outside, convinced some epic cosmic event had done me in, but all appeared normal. No one else was even about. There was no sign a radioactive cloud had wafted by, at least that I could tell. No creatures in space suits appeared to be lurking, waiting to stuff me into an alien craft and whisk me off to Planet Wacko. I had no idea what could have happened to me.
Not wanting to revisit whatever unfriendly influence had performed some tweaked form of psychic surgery on my mind and body in my new home, I walked around and tried to think. Gradually the symptoms began to subside as the fresh air permeated my pores.
Uncertain of what to make of this development, I went back to the house to retrieve a few things and check for the possible presence of demons. Pow! The pain immediately crashed back over me, rendering me nearly paralyzed but extremely motivated to vacate immediately.
The next few days and weeks are now a blur of guestrooms and couches. Sometimes I slept a few hours; mostly I tried to settle down only to find I was again reacting to something in whatever new environment I found myself. Eventually I would arise-inevitably in tears of rage, confusion and terror-and flee to my car to bellow with the pain and frustration of another sleepless night. Admittedly, I have never lived a life of quiet desperation. But the level of noisy desperation I was now experiencing was ridiculous. What was going on?
I tried to make sense of this seemingly senseless situation. The symptoms were consistent, as was their abatement upon escaping into (relatively) clean air. In some instances, relief would come within minutes, although more often hours; in the case of that first experience it took a full week for the pain and emotional berserkitude to completely cease and desist (at which point I went back to try to pack my stuff and completely wiped myself out again).
I also knew I did not know how to survive as a desert rat in the dead of winter, a point I proved to myself one incredibly stupid night some weeks into this torturous odyssey: I had made myself a nest of sleeping bags and cushions on my back porch, rigged up a tarp above me against the threatening drizzle, and had actually fallen asleep feeling cozy and almost hopeful. Having used heavy pottery to secure the tarp, however, I ended up in the ER the next morning with a near concussion after I dislodged the heaviest pot onto my already offended skull while thrashing my way out of the covers. I was dizzy for weeks.
So, being certifiably insane by this time, I rented House Two. Unfortunately, I did so without discovering what was killing me in the first one. In retrospect, I know that testing out the place on a weekend, when my housemate-to-be was home from work and the doors and windows had been open for several hours, did not begin to give me an accurate assessment of the situation.
However, not having been given the gift of 20-20 hindsight, I decided I had finally found a safe situation when the heart-pounding I initially experienced upon entering the building stopped quickly. As no new symptoms developed during the hours I stayed, I sighed with relief and decided that first reaction was merely fear of the unknown. I suppose that made some crazy sort of sense, as everything I encountered had become unpredictable and felt, therefore, potentially dangerous.
So. I moved some of my stuff in the following Monday and immediately knew I was in trouble. The house, which had been closed up all day, emitted a very strong odor of bitter citrus and my head started to scream. (My most vivid memory of that part of this real-life soap opera, by the way, was the kind, but futile, attempt my clothing-optional housemate made to exterminate any possible allergens from the premises. He did so by washing down the kitchen in the buff, in the process of which all we found was an empty can of residually acting pesticide under the sink.)
I now had belongings in Houses One and Two and was scared to enter either one.
During these skittish months of enforced homelessness I also sought clarity and help from the medical community. My HMO doctor, steeped in the helpful mindset of the American Medical Association, merely regarded me as a hysteric-lunatic-hypochondriac who had sprouted several extra heads, all of them suspect. She spouted platitudes and sent me away. It wasn't really her fault; my presenting problems were way beyond her experience or expertise. Unfortunately, she showed no inclination to understand or to learn, either.
Mercifully, I was also the patient of a specialist who was already treating me for other quirky syndromes such as systemic metabolic imbalances, food allergies and hormonal wackedness. A clinical ecologist, psychiatrist and orthomolecular physician (which refers to using the correct substances to achieve optimal health), he knew exactly what had become of my life: I had become severely hyper-reactive to environmental toxins (I remembered the fresh paint in House One and the bug spray in Two) and now suffered from what is commonly known as multiple chemical sensitivity (MCS) or environmental illness (EI), among many other descriptive but equally depressing names.
He explained that many people's immune systems-for any number of reasons-break down to such a point that they cannot cope with the onslaught of manmade poisons we are regularly subjected to in our ever-increasingly polluted home and work environments.
For example, many sensitive individuals find themselves feeling nauseated and spacey after the installation of new carpeting or linoleum-both of which are manufactured with heavy doses of formaldehyde and other toxic substances which offgas into their surroundings-or after breathing the fumes of solvents while using copiers in buildings that are improperly ventilated. This condition is referred to as Sick Building Syndrome, or S.B.S.
Eventually, the central nervous system can become involved and neurological problems (such as my headaches, heart distress, brain complaints and tendency to burst into tears when exposed to chemicals) emerge to further complicate the situation. My symptoms made sense to him. I was only functionally-not organically-nuts.
He further noted the actual physiological phenomenon that takes place in the case of chemical injury is an acid reaction at the cellular level in which certain vital enzymes are destroyed. These actions can be reversed within two to three years, assuming the individual is able to remove him- or herself from the environment that caused the original damage and find a safe place to live.
Since deep and seemingly intractable stress was the main trigger that had gradually but relentlessly led to my body's nearly total inability to function even before this latest insult to my health, he also recommended I move to a very quiet location where I could let my beleaguered self detoxify and heal.
He reassured me that if I moved to an older home (no fresh paint or new anything), drank healthy water, munched organic veggies and breathed the wholesome air provided by either the mountains or the ocean, I would soon make a full recovery.
Gratefully, I began to take stock of my situation. Having a diagnosis made me feel less terminally unique: this was a condition with a name and a description, common enough to engender websites, books and pamphlets galore, and-most importantly-fellow sufferers who understood. For I had quickly discovered that the most disconcerting aspect of this anomaly was its invisibility. I looked healthy. I spoke, for the most part, articulately. True, upon encountering a dicey substance I raved a bit as the fumes wreaked havoc with my neurology and rendered me temporarily non compos mentis.
But then, I had never been known as a particularly well-modulated emotional being; I merely had a wonderful support group of friends and family that put up with my vagaries and ravings, putting me back together as necessary and loving me just the same.
However, even these deeply sympathetic people simply couldn't understand how the most microscopic amount of a hostile substance could set me off, or why I could smell (and consequently react to) pesticides, perfumes and cleaning supplies far more quickly than anyone else. I didn't know the chemistry of the process, either; I just knew it was a fact.
(I now know, by the way, that it's the olfactory gland's proximity and connection to the brain that triggers such immediate responses in the severely sensitive. I have since been offered the following helpful (?!) suggestions to offset this situation when in the presence of iffy smells: wear a mask; hold my breath; stick Vaseline-coated cotton balls up my nose to block the odors from sending distress signals north; and, when in doubt, run. Sounds, and possibly is, a paranoid approach to life. But when your world is suddenly pulsating with seemingly innocent substances that turn on you without warning, you begin to think you are perhaps not paranoid enough.)
That, in a roundabout way, explains why I was wearing a gas mask while using that friend's bathing facilities as a bed when first describing this whole ordeal. I had originally planned to stay in her guestroom, but discovered she had painted an adjoining door several weeks before. Actually, I should say my pain antennae detected a minute amount of particles still hanging around the hallway from that home-decorating project and went into hyper mode. I was therefore attempting to filter out the fumes as I grimly made myself as comfortable as I could on a nest of pillows in the tub.
I was into serious self-pity at this point, and in no mood to find the humor in anything. However, upon returning from her evening out, my hostess came in and surveyed the scene. Finding me thus attired and situated she was struck by the inherent absurdity of the situation and clutched her sides, pointing and gasping for breath as she howled wordlessly but at length.
But before I could point out that I didn't appreciate her reaction to my plight, her roomie came in and freaked out, begging me to try the bed again. She couldn't handle the concept of a houseguest sleeping thusly, and tried to convince me that I couldn't possibly be reacting to paint that had not been applied all that recently.
Realizing this well-intentioned woman couldn't begin to relate to my reality, I offered to go sleep in my car if that would offend her sensibilities less. She kindly shut up and mumbled I was welcome to her bathtub any time. My friend, still giggling, thanked her on my behalf. Not for the first (or last) time did I ungraciously wish an intense five minutes of MCS on the entire Earth's population. The "mile in another's moccasins" thing.
Another, sadder, instance of people's inability to empathize occurred when I found myself unable to attend a memorial service because the pain I experienced on the premises was unbearable. I now know the building used for the occasion was sprayed regularly with pesticides, but then all I knew was that someone very dear to me accused me of causing myself a headache because I didn't want to deal with death.
She defended her position on the grounds that she also had a very acute sense of smell and she was sure she would have been able to detect toxic residues, had any existed. I was very hurt at the time, even though I knew she only spoke out of frustration at not being able to help me or fix the problem.
But for a long time I didn't get it, either, although gradually I began to educate myself. My years of interpreting life as one crisis after another had thoroughly trashed my immune system and I was now stuck with a serious case of MCS. I would have to learn how to live my life on new terms. At first it seemed as though it might be manageable: If I followed my doctor's recommendations I could, by using reasonable caution, live a moderately normal life while my enzymes rejuvenated themselves.
But where? I was becoming more desperate and ragged, both emotionally and physically, as the weeks dragged on and finding livable housing continued to prove a virtual impossibility.
Finally, a friend called with a lead. She had found, through a convoluted word-of-mouth process, a place in the high desert of San Diego County that was designed especially for those with my particular challenges. Officially named the Community for the Environmentally Sensitive (CES) and informally referred to as The Last Resort (which it is for those with absolutely nowhere else to go), this putative sanctuary was located beyond the back of beyond. It offered clean air and water, a peaceful and safe environment and, best of all, space for me.
I packed up my battered, ancient Toyota, which looked as though it had endured several wars due to the 28 two-pound boxes of baking soda with which I had doused it after inadvertently contaminating the poor beast with pesticides I picked up from my short but exquisitely painful stay at House Two.
By then I didn't have a whole lot in the way of material possessions, because when I vacated that last place I stashed my stuff in a storage facility. Upon learning of the management's propensity for spraying its units with pesticide, I had my kids dispose of my earthly junque. That part was easy-by then clothing and furniture seemed trivial and even irrelevant compared to the possibility of ever getting a real night's sleep and even (maybe) living indoors again.
The hardest part of the preparations by far was parting with my 11-month-old mini-dachshund, Grover, who had provided solace and warmth during those insanely hard first four months. No indoor animals were allowed at CES, because different residents had varying allergic problems. The owner, Harriett Molloy, also explained that I would need all my energy for healing myself and would have none to spare. I silently disagreed, but as I literally saw no other option, I found what I prayed would be a good home for my precious pup. I then climbed into my car and cried all the way to San Diego, some five hours south.
That is, until I hit Highway 94. My tears instantly dried up-replaced by sheer, raw terror. I told God I didn't find it amusing in the least that He was plunking me at the end of a road that I would never again find the courage to drive. I had no choice but to stay there in the little town of Potrero and either heal or die.
By the time I arrived I was truly a nervous wreck, shaking and gibbering feebly. I was greeted by Molloy, who took one look at me and led me to the trailer I was to occupy. I immediately got a headache upon entering, but being in no state to even worry about what that might mean, I threw myself on a rock-hard mattress on an outside porch and slept.
The next three months were pretty much the same: I couldn't stay inside the trailer for more than a short while without experiencing my normal symptoms, but I was able to sleep outside. As this was February, I had to alternate such nights with some in a well-ventilated indoor area when the rains made such an arrangement necessary. I wore eight layers of sweats day and night for several weeks, taking them off only once a week to shower-I was still too traumatized to shed the protective covering I had fashioned to keep out the cold and the world, which had come to seem a hostile and scary place. I wrestled with a mound of blankets, sleeping bags and God. I cursed, screamed and pounded that mattress.
I used no heat or light. Looking back, I realize I lived rather like a wild animal in survival mode. One morning, I recall, a fellow community member found me looking, she said with concern, like Bambi-my eyes were frozen open in fear. Even though I was technically safe-the dwelling (like all those at CES) was old and painted with non-toxic materials; all electric (gas and wood smoke are potent allergens for the sensitive) and the floors tiled rather than carpeted-for some reason I continued to react poorly to my environment and I wasn't resting well. My back was sore all the time from the bed. Obviously, I wasn't dramatically improving. But I was also too freaked to leave. There was that hellish road-and nowhere to drive to. I stayed, kicking at the unfairness of life.
Gradually the weather thawed, I peeled off the layers and ventured out of my cave. Molloy and the others befriended me, served me tea and took me to town to shop for food. I took comfort in the fact that everyone there knew whereof I spoke. We understood one another's situations, although we reacted to different things and in different ways.
(Among my community mates during my 19-month stay at CES were a former NASA physicist-cum-psychologist, two ex-lawyers, a one-time business consultant, an airline steward and the retired executive secretary of an area school district. Virtually all of the above individuals had become ill due to chemical exposures on the job; one is currently in litigation with a local government agency over the injury to her nervous system due to S.B.S.)
By May, another housing unit became vacant, one in which I could actually live. Unfortunately, I wasn't able to sleep in this bed because I had developed a severe allergy to dust and the aged mattress and box spring, although free from the potential irritants often found in new materials, still bothered me. And thus it was that I went through the most unbelievable episode of this entire experience: Due to my constantly extreme level of stress from sleeplessness and its resultant anxiety, my serotonin levels diminished into virtual non-existence.
I didn't know that at the time, of course. All I knew was that I could no longer sit or lie down anywhere without severe head pain, heart racing and electric shocks racing throughout my body. Serotonin, I learned, is the brain chemical in charge of sensation, and apparently-as I no longer produced any of this magic substance-I could no longer tolerate the pressure of even something as natural as wood on my skin. By trial and error I found I could at least tolerate the metal straps that held an outdoor redwood chair together and so I managed to snatch a few hours of sleep a night by sitting up in one of these torture chambers without any pad or blankets under or over me. But I was rapidly losing what little of my mind I had thus far managed to hang onto.
I called my children and my best friends and told them I didn't think I could make it any more. I'm sure I scared them, but they couldn't have been more terrified than I was. I truly had no idea what to do. I walked for hours at a time, begging for relief or death. Finally, my son came down to visit and pointed out that if I could sleep in such a chair, why not use a redwood lounge on which I could at least stretch out. Lugging one over to the cottage from a nearby picnic area, he helped me to lie down. (By then I was having severe back pain from the non-sleeping arrangements.) He played me a lullaby on his guitar and we both wept.
About this time I found the presence of mind to call the doctor who had helped me so much some months earlier, and he again easily diagnosed the root of the problem. He immediately put me on a hefty dose of a selective serotonin reuptake inhibitor that gradually allowed me to tolerate more pressure against my body. I have no idea how it did that-suffice it to say I'm eternally grateful to whatever pharmaceutical company developed that blessed drug. Although I'm strictly an alternative-route gal, I have no doubt that prescription medication saved what was left of my life.
I know this because the day I had that first long-distance phone consultation from my high-desert hideout with my physician, I literally hit bottom: When I had put my feet on the floor upon awakening that morning my head had started to scream. So did I, and as I did so I remember thinking, I wonder if I'll have to be suspended from the ceiling, since I can no longer tolerate any contact with any surface. I don't know how much longer I could have survived without that medical intervention; my CNS was obviously stretched to the breaking point. I believe I was headed for a stroke, at best.
But the worst was finally over. Eventually, I found I was able to sleep on the floor on a pile of blankets-luxury! That didn't help my back much, but at least I was getting some sleep. I even began to sit in regular chairs again and soon moved into my third and final accommodation at CES. Wonder of wonders, the bed there was comfortable and I slept, long and well, for the first time in a full year. Sleep is one of those things I used to take for granted; I now awake every morning and express deep gratitude for slumber granted.
Gradually my reactions became less severe and I stopped fearing the very molecules I breathed. I realized I was probably going to make it. Slowly my tightly coiled nervous system began to think about unwinding.
A year later it is still thinking about it.
I now live in the mountain community of Descanso, which means "place of rest" in some Indian language. I try to meditate on that concept on a regular basis as I continue my healing process, because I still wrestle with the same issues that put me here. My addiction (and I use that word advisedly) to my own adrenalin is a lifelong one, and is dying very ungraciously.
During this past year, I have clearly and repeatedly demonstrated to myself the absolute correlation between stress and my ability to cope with toxic exposures: If I start to let myself get back into the frenetic lifestyle and mindset on which I thrived (or, more truthfully, broke down) before all of this happened, I pay for it immediately by reacting to things that hadn't bothered me for months. My adrenal glands, so exhausted from decades of unresolved tension, are still fragile and I am learning to respect their need for tranquility.
I could give a long and boring account of my daily routines and all the modalities I have incorporated into my healing regimen. I won't. Ditto a list of the websites and publications focusing on the ravages of environmental pollution and their effects on an ever-increasing percentage of the population.
But I will note that when I ran an ad looking for safe housing in several local papers recently, I was bombarded by dozens of responses from other chemically sensitive people hiding out around the county, looking desperately for places to live that wouldn't hurt them or calling just to commiserate. They had no solutions to offer me-only fear and sadness.
I don't know the answer. The chemical companies keep producing chemicals; the government continues to regulate this industry poorly, if at all; and we live perpetually more stressful lives so that our overly taxed systems cope ever less well with these environmental assaults.
I think I'll go take a bath. I wonder where I put that gas mask.