Jill Sverdlove’s story appeared in my 2008 book Amputated Lives: Coping with Chemical Sensitivity, which can be purchased through my personal website on this page or on Kindle. Her beautifully written account illustrates in a vivid way the various mistakes that chemically sensitive people so often make as they are desperately trying to regain their health.
In the fall of 2001, at the age of thirty-two, my life was full. I’d worked hard in my career and was the president of a thriving business in New York City. I spent long hours in the office and nights and weekends with friends—dancing, attending concerts, restaurants, readings, or movies. I dated musicians, practiced yoga, and threw great parties in my Upper West Side brownstone. Although I was enjoying my life, I looked forward to marriage, kids, and owning a home someday soon.
Within two years, my health, work, apartment, friends, car, and all my belongings would vanish. I would be surviving one fragrance-free breath at a time.
* * * * *
Three days after September 11, 2001, I began to have what I now call “reactions” to my office. I had no idea at first that something had started to happen to my body. The onset of illness began so gradually that it would take two more years and a final debilitating exposure before I would be diagnosed properly. It would take much longer before I understood the full story.
I started my morning on September 11, 2001, by heading to a meeting downtown. As I was leaving my apartment, my roommate exclaimed something about a plane and the World Trade Center. I thought nothing of it, worrying instead that I would be late for my appointment if I didn’t hurry.
Soon after I boarded my subway train, it was abruptly halted in a dark tunnel between stops. We remained stuck in the subway system for an inordinately long time, hearing only the muffled sounds of the conductor attempting communication. Our silence indicated we all sensed the same thing: something was very wrong, more than the average-day-in-NYC wrong. Later I would learn that not far from where we were trapped in our subway train, the Twin Towers had started to collapse, people were jumping off the falling buildings, and Lower Manhattan was filled with thick smoke and debris. By the time we finally escaped from our subway car by working our way through an underground maze of pungent tunnels, the world outside was surreal—clouds of dense black and green and gray smoke billowing beneath a clear, cloudless sky. That day, and for a long time afterwards, the sky would remain full of soot and chemicals. Like many others, after I reached my office, I soon headed down the West Side, back toward Ground Zero, wanting to understand what had happened, wanting to see something tangible.
A few days later, when I was back at work in my office on Columbus Circle, I noticed that even though our offices were on the eighth floor, I could smell the fumes from the truck filling the petroleum tank in the basement, although I had previously never noticed these fumes. The kitchen smoke from the restaurant on the ground floor of our building also suddenly began to severely irritate me. And something in my private office was causing me to have severe headaches, even though I’d never had headaches like these prior to 9/11.
When I spent time in my office, my brain felt swollen and heavy and my fingers became hot, red, and tingly. My eyes burned, and my throat felt sore and scratchy. At that stage, since I mostly noticed major sensations in my office, I was convinced something in that room was causing the reactions. But there was no World Trade Center dust inside my office because it was so far from Ground Zero, so there was nothing obvious to clean.
Days and then weeks passed. Soon I noticed that even the larger area around my private office set off physical problems. The copy machine induced dizziness and nausea, the fax made me loopy. Standing near my moldy air conditioning unit, even when it was off, wiped me out. When I was working on my computer, I experienced viselike headaches and, what was strangest for me, a fogginess in my brain that left me feeling extremely spacey.
I went to a doctor who assured me that I had no “regular” allergies and suggested that perhaps all I needed was an air filter for the office. Although the office air had never been great (it was an old building), I didn’t understand how it suddenly could be affecting me in any way. I wouldn’t learn for years that the 9/11 toxic exposures had initiated a sensitivity to chemicals and to the mycotoxins given off by molds. (The air conditioner and carpet harbored molds, and the office machines gave off chemicals.) Back then I had no idea what volatile organic compounds were, nor could I fathom the connection between air quality and my symptoms. I was a longtime runner. I was a New Yorker. I survived on bad air. But I followed the doctors’ advice and bought a mega HEPA air filter for the office anyway.
It didn’t make the slightest difference.
* * * * *
Prior to September 11, I had been in pretty decent overall health. I’d had some recent foot surgeries, an appendectomy, and a few health problems like hypothyroidism, for which I took medication. I had been a distance runner for years, only recently stopping because of foot problems. After I had to give up running, I took up yoga. My life was about movement, and I rarely sat still, instead always working, exercising, playing.
As the president of Gotham Writers’ Workshop, the largest creative writing school in the country, it was my job to manage all aspects of the company, from finances and marketing to future planning. I dealt with 80 employees and 6,000 students a year. The two original founders were full-time writers who were absentee owners, so almost all responsibility fell to me. During the six years I ran the business, I had taken a small, fledgling workshop and grown it into a successful multimillion-dollar business. At that point, it was my priority, and I loved it. The last thing I wanted to do was tell my bosses that I was having strange reactions to certain objects in the office, maybe even to the office itself. Besides, I wasn’t debilitated, and my reactions were still manageable.
However, over the next few weeks, along with the occasional tingling in my limbs and the thick head pain, I couldn’t fend off the odd sense that I was slowly deteriorating.
When I was at home in my Upper West Side apartment, I would feel normal, which kept my concern in balance. And yet each morning, after only a short time in the office, the headaches and pain would come back. Nonetheless, I continued functioning at high levels despite a sense that my health was slipping away.
Then other incidents occurred. I had been attempting to buy an apartment. A few places I looked at caused me to experience the same awful sensations I suffered in the office. Then I had a bad reaction in a friend’s car in which the carpeting had become moldy as the result of a water leak from a broken window. After being in the car for a half hour, I passed out. Although I rationalized that these events were brief and the problem was primarily just in my office, the urge to escape the city began to take hold, and I stopped apartment hunting.
More physical issues were brewing. My hormone and thyroid levels went awry again after having been stable for years. I had strange aches, especially in my lower right abdomen after eating. My sinuses were so occluded that people often mistakenly thought I had a cold. As my viselike headaches continued, I decided to tell the owners that something was wrong, and I asked for a different office.
But the owners were rarely in the facility, had little understanding of my situation, and were opposed to spending money on another office (even though we were bursting at the seams). After some tension, they eventually compromised, and I rented another room on a different floor in the same building for me and the two other employees. I felt noticeably better there. Unfortunately, my bosses only temporarily appeased me. Even though they had previously deemed my performance exceptional and I had brought in significant profits over the years, they were worried about the welfare of the company. I was worried about my welfare. The situation was becoming very uncomfortable.
The longing to leave New York became a scorching thirst, my body screaming “Get Out.” In the fall of 2002, I gave up my rights in the company, negotiated a deal that provided me enough funds to get by for a short while, and fled New York, believing all would then be fine.
Back then, I didn’t know I was showing signs of chemical sensitivity. I had never even heard of it, nor had anyone around me. I can only wonder what would have happened if someone had recognized the onset and explained what was going on in my body before it got worse, but the reality is that most of us don’t learn until it’s too late. [Alison Johnson’s note: A few months after 9/11, my Chemical Sensitivity Foundation ran several ads in a free newspaper that distributes 10,000 copies near Ground Zero. We hoped to alert New Yorkers to the possibility that they might develop chemical sensitivity from their exposure to the WTC toxins, but at this point, few were ready to hear that message.]
* * * * *
After I left New York, I went to Virginia Beach, Virginia, to regroup while helping a girlfriend with her business there. A mutual friend offered a rental that her husband had recently purchased for only $20,000, an old house built in 1923. The moment I walked inside I got a bad headache. “It smells strange in here,” I told my friend, but she convinced me that the odor was from a floor cleaner. I didn’t want to appear ungrateful, so I moved in.
Only later would I learn that the attic had a leaking water tank and the damp insulation up there was covered in very visible mold. The previous tenant had even encouraged the moisture in order to grow marijuana in the attic, as the remnants attested. All this directly over my bedroom.
Within weeks, especially when I was inside the house, I started having blinding headaches that drained me of all energy. My sinuses throbbed with pain, and every morning I woke up with uncomfortably swollen hands and incredible fatigue. My digestion deteriorated, causing me to lose weight rapidly.
But when I complained to my friend about the mold in the house, which was visible in some places and reeked all over, she and her husband just laughed. “Mold is everywhere,” they told me. “You just have an allergy. Everyone has allergies.”
I scrubbed the house with bleach and a powerful chemical spray that my friend’s husband provided. The smell and my reactions worsened, and my breathing problems progressed to the point that I needed medical attention and eventually an inhaler. I had never had asthma before, nor such intense lung pain.
Six months too late I would discover that the old house had extremely high levels of toxic black molds: Stachybotrous, Aspergillus, Penicillium, and more. I would also eventually discover how dangerous black mold and the mycotoxins they give off are, especially for someone like me, who had already started to develop chemical sensitivity.
The hit to my already susceptible system was too much. I naively downed antibiotics as my list of symptoms now included huge hives, unrelenting diarrhea, Candida with yeast infections, a chronic sinus infection, and a head thick with a brain fog that wouldn’t lift until I was out of the house for hours.
I finally decided to leave, taking my clothes, journals, pictures, computer, and furniture out of the Virginia house and moving it all into my parents’ suburban New York home. Unfortunately, within a few days I realized all my belongings I had brought along smelled horrible. The stench was unmistakable—a slightly sweet yet pungent smell, just like the odor inside the Virginia rental house. Although there is no feasible way to get rid of mycotoxins, my mom and I didn’t realize this and were convinced we could fix the problem. First, my mother took me to a doctor, who put me on Prednisone. (I later learned that, like antibiotics, this steroid destroys good bacteria in the gut and ultimately feeds fungus even more.) Then we began a major cleaning operation. I sniffed each item (a.k.a. inhaling fungal spores into my sinus tissue) to check what stank (everything did). We laundered, bleached, and dry-cleaned clothing. Finally, we sprayed and scrubbed all other items, walls, and floors with disinfectant and other heavy-duty chemicals.
The next morning the Jill I knew was gone. I had disappeared into an endless reaction, unable to breathe, function, think clearly, sleep, or hold any food in. I had started to react to everything. Re-exposure to the cleaners we had just used made my throat close up. The computer made my hands sting, and the cell phone made my head feel as if it was being crushed. My clothes gave me hives, and an incessant throbbing pain took hold in my left sinus and never let up for the next three years. Experiencing an endless massive reaction, I was convinced this meant the mold had gotten onto everything.
We didn’t realize then that I was reacting to more than the mold. I was also reacting to extremely low levels of fragrances and other chemicals, like those in the cleaning products we were using. My 9/11 toxic exposures had triggered multiple chemical sensitivity (MCS), and then the subsequent mold exposure in Virginia, the steroids, and our massive cleaning project had finally pushed me into an extreme case of chemical sensitivity and electromagnetic sensitivity. Further-more, the allergists I saw were not trained to recognize or treat the effects of chemical injury, as MCS is a response to toxic exposures, not an allergic reaction.
I could think of no other solution but to move again, and Boulder, Colorado, seemed an appealing destination. I had discovered Boulder on a cross-country trip after college and had lived there for eight months. Now I felt the urge to return, my body craving the mountain air.
By this point, my mom and I had learned from professional industrial hygienists that, sure enough, I had brought the dangerous molds from the Virginia house into my mom’s attic, my bedroom, and her basement, contaminating everything in those rooms. Eventually I was also tested and showed exorbitantly high, off-the-chart levels of exposure, especially to Stachybotrous mold mycotoxins (one of the most dangerous toxic molds). The toxicologists told me to get rid of everything, including my cat, Angus, who was also showing signs of mycotoxin poisoning from the Virginia rental.
But it’s not easy throwing out all that you own. I loved my cat, and my identity was still attached to my belongings. My stuff would be fine, I reasoned, if it was cleaned enough and aired out. I would heal and my cat would too. I just had to leave.
And so, dressed in clothing that still contained some residues of mold and fabric softener, I donned a face mask (to the surprise of many interstate truckers) and drove off in my mycotoxin-marinated Celica convertible, my kitty and all my contaminated belongings in tow. At that point, the idea of mycotoxin poisoning was so surreal to me and so hard to accept that I even paid movers a few thousand dollars to truck the rest of my smelly stuff out to Colorado.
When the movers arrived in Boulder, I suffered an anaphylactic reaction to the mycotoxins in my belongings. Despite endless cleanings, my old stuff contaminated my new rental and ruined a few more rentals after that. A lot of lessons had to be learned, time had to pass, and most of my savings had to be lost before my stubbornness subsided and I realized that the mycotoxins given off by toxic mold can’t be eliminated by cleaning and they don’t disappear over time. I would never again tolerate my stuff, not even my car, not even in Colorado. Any proximity to my belongings induced hives, shooting pains up my arms, diarrhea, a band of strange pressure pushing down on my eyebrows and into my temples, and mental reactions that ranged from irritability to paranoia.
A year later, when my urine tested positive for continued exposure to high levels of Stachybotrous mycotoxins, I finally knew I could no longer keep hauling my belongings around with me. They all had to go: the sexy, one-of-a-kind New York City clothes, my cozy old sweaters, my antique bookshelf and other furniture, my Trek mountain bike, my cherished lifetime collection of books, my files and letters and correspondence of thirty-five years, my grandma’s jewelry box and my dad’s family paintings. An endless list of loss from memory chatchkas and hand drums to hundreds of personally designed baseball caps from the hat company I had run before moving to Gotham Writers’ Workshop. Even my beloved convertible car was still contaminated, and it too had to go.
Most heartbreaking of all was giving up my cat and best friend of ten years. With treatment, Angus had recovered fairly well from the mold exposure, but I could no longer care for him. In tears, I took him to a friend’s place.
It would have been easier to convince myself that this was all psychological, but the reality was that the experiment could be duplicated. Whenever I was exposed to these mycotoxin-contaminated items (which still smelled so much that others noticed the odor), I reacted severely. If that wasn’t convincing enough, even without knowing the history, others with sensitivities also reacted to my stuff.
Finally all that was left of my former life was a big plastic tub with a lifetime of journals and pictures wrapped in dozens of Ziplocs and Hefty bags. I could never again open that sealed sarcophagus without severe physical repercussions.
Unfortunately, although I felt significantly better after getting rid of my contaminated belongings, the fuzzy brain fog remained with me, as did my extreme sensitivity to synthetic fragrances and other chemicals. When I was reacting to an exposure, besides intense physical and emotional responses, I would sometimes lose the ability to speak properly, to write, spell, remember things, or have word recall.
By this point, I no longer tolerated any house or apartment because of my hypersensitivity to so many things found in indoor environments. Gas heat depleted me. Washers and dryers in which conventional detergents had been used were unbearable. Scented candles and plug-in air fresheners crippled my digestion and made me feel irrationally violent. There were many other triggers: gas stoves, formaldehyde (in carpet, most cabinets, and new paint), pesticides, flame-retardant-covered mattresses, and fabric softener used by roommates or wafting from neighbors’ dryer vents. Any place near major roads proved problematic because I reacted to the auto and diesel exhaust wafting through the windows. Old places meant mold, and new ones meant formaldehyde. My reactions were endless and sounded ludicrous to real estate agents and potential housemates.
People with chemical sensitivity usually develop new food intolerances, and I was no exception, so my digestion was shot by this point. I appeared gaunt and pale, my eyes sunken and underlined with black circles. Although I was exhausted, I had great difficulty sleeping. My throat was raw and hoarse from continual exposures, the throbbing in my sinuses beat on, and my hair started falling out in clumps.
At last, I found a doctor who diagnosed me as having MCS, which she only knew about because she, too, suffered from it. Then I learned about a book that clarified everything that had happened to me: Multiple Chemical Sensitivity: A Survival Guide, by Pamela Reed Gibson. This book was an immense help to me as I made decisions about how to live with MCS.
During that spring and summer of 2003, I spent most of my time outdoors, living and camping high in the mountains near Edwards, Colorado, where a friend lived. My goal was to spend as much time as possible outside in the fresh air, clearing my lungs and sweating out toxins.
Any attempt to live a normal life backfired. I stubbornly tried to go into a beauty salon to get my hair cut (and, crazy as it sounds, dyed, because it was coming in all gray). As soon as the dye was brought out, my nose started to bleed and I had shooting pains throughout my limbs. Although I quickly left, I developed an incapacitating headache that lasted for days.
I also attempted to work in a small mountain bookstore. That was a terrible idea because the printer’s ink on the books and the perfume on the tourists sent me spiraling still lower. I made a few new friends, and even tried having a relationship, but my strange situation was hard for anyone to understand and hard enough for me to deal with.
Trying to reach out to former friends proved futile. With MCS, there is continual stress not only from loss, lack of control, homelessness, uncertainty, misdiagnosis, and physical pain, but also from the constant skepticism of others. Perhaps the most devastating aspect, unique to this illness, was the lack of support from friends. Hardly anyone understands MCS. Most people don’t know how to deal with this illness, nor do they want to. It’s too overwhelming to think that common, everyday chemicals can affect some people in such an extreme way. The issue is compounded by the fact that chemical companies have immense power and want to make MCS sound controversial.
Calling friends for support had become difficult. Most could not empathize, and I knew they were thinking: ‘You’re a New Yorker who flipped her lid. No one is allergic to the world, and I’m sorry, but unless you can talk about a good new restaurant in SoHo or Brooklyn real estate there’s really nothing left to this relationship.” Although my mother remained supportive, my brother and sister were busy with their kids and couldn’t comprehend my condition. And the Virginia friend whose husband owned the rented moldy house also conveniently disappeared from my life, not wanting to hear how sick I’d become.
The loneliness of this condition caused me incredible heartache. But knowing that stress is one of many causes and effects of illness, I realized I would have to minimize it in order to heal. I could no longer waste energy asking for understanding and help from others, nor try to change their beliefs. And trying to defend my sanity only made me seem more insane. I wouldn’t bother anymore.
There were many times when I thought death would be easier, especially when I was having a bad reaction. My life and my purpose felt so diminished, and I was beyond exhausted. Somehow survival instinct propelled me forward, however, and I researched and networked until I found a decent Colorado environmental illness specialist who confirmed the MCS diagnosis and was familiar with treatments for some of my symptoms. He put me through ten weeks of hyperbaric oxygen chamber therapy, which improved my brain function noticeably.
I believe it was the mountains, though, that probably saved my life. The fresh air helped sooth my damaged lungs, and the tranquility and clarity of nature maintained my sanity. Daily yoga played a big role, too. But as winter approached, the cold was pushing me indoors, and I decided to move down to Boulder, which was on the edge of the plains and much more temperate. It was also full of health food stores and open-minded people.
The endless home search continued to be futile, as my notebooks filled with scribbled addresses and tiny pull tabs from bulletin board flyers. Many nights I slept on strangers’ floors to test potential places, thereby creating interesting memories and even friendships. At last, I found a room I tolerated in a huge historical landmark house full of all-natural students from Naropa, a Buddhist college. Although I often slept on the porch, at least I could rest without inhaling unrelenting synthetic fragrances.
Unfortunately, I soon could no longer tolerate this house, and I had problems with the other places that I tried, for various reasons from roommates’ fragranced products to renovations. In the meantime, I went to dozens of practitioners, trying everything, squandering my savings in the desperate hope that some healer’s promised cure would solve my problems. Some poked me with needles to draw blood or move qi. Others caked me in clay, soaked my feet in rust colored water, and irrigated my colon. I went on the Blood Type Diet, the Maker’s Diet, the Candida Diet, and the 28-Day Cleanse. All that became clear was I felt better when I was away from chemical exposures.
To be continued in the next blog