by Alan Bell
As my health and spirits sagged, Dr. Robbins referred me to the Human Ecology Action League (HEAL) based in Atlanta, Georgia. “You should join this support group,” he urged. “They’ve got enormous contacts and research on how to cope with chemical sensitivities.”
Susan, who’d driven me to his office for that visit, walked out of there shaking her head. She was worried about money and still couldn’t accept the idea that I suffered from an illness caused by an invisible injury. Nor could she believe that my bizarre symptoms were triggered by exposures to environments that other people seemingly tolerated just fine.
“This guy is a quack, Alan,” she insisted. “He’s putting crazy ideas in your mind. You need to find a different doctor.”
I stared at her. “Can’t you tell I’m reacting to stuff all around us?”
“No,” she said stubbornly. “I still don’t buy it. And I will not let you waste our money by going to Dallas, either. Don’t you dare even think about going there for treatment.”
I agreed with her: I wasn’t ready for something so drastic as traveling to Texas just to see a doctor there when I’d already seen so many physicians. But I did attend meetings with HEAL members at a local chapter, listening to doctors talk about how chemicals of the modern world were killing their patients. I also contacted members of HEAL by phone to hear their stories. Many were like me—too ill to meet in person—so this was our only way of communicating. These people came from all walks of life and suffered from a variety of disorders brought on by environmental poisoning of one kind or another.
Some of their stories were frankly terrifying, especially the ones from people who had been suffering for decades. If they couldn’t find a cure, what hope did I have? On the other hand, what could I do but hope?
Finally, I had to admit that living in humid, hot South Florida in a house that was emitting toxic chemicals was killing me. Dr. Robbins advised me to find a place far away and hope my body could heal itself. This meant finding a place with clean, dry air and a chemical-free dwelling.
“The environment is a huge factor in how you feel,” one guy from HEAL reminded me. “You’ve got to get out of South Florida.”
I began forming a plan of action. I wondered if I should try a place I’d heard about, Seagoville, a community of people suffering from chemical sensitivities located near Dr. Rea’s practice in Dallas. I phoned other patients I’d met through HEAL to ask their advice. They told me that some Seagoville residents had gotten better, but out of the thousands of people Dr. Rea had treated, few, if any, had been cured. Those were dismal odds to face.
I decided I’d be better off just trying out a new climate and a “safe” house. After doing some research through the HEAL network, I finally found what seemed like the ideal spot: Elgin, a small town about a hundred miles from Tucson, Arizona. I’d never been there, but it was cooler and drier than Florida; in addition, there were few cars, no industry, and no smog to pollute the air.
There wasn’t much to Elgin. The town consisted of a gas station, post office, and a 7-11. But it had an environmentally safe place I could buy: an 800-square-foot adobe brick house specially constructed by a woman who’d suffered from multiple chemical sensitivity before she passed away.
I’d found the house through an ad in one of the HEAL magazines. It had tile floors and everything inside it was metal or glass, including the table and chairs. There were no drapes, just metal slats on the windows. When anyone went inside or out, air locks on the roof would kick in and prevent irritating chemicals from entering this environmentally controlled bubble. The kitchen was built fifty feet away from the house to avoid cooking fumes, in a detached building barely big enough for a stove, refrigerator, sink, and table.
It sounded sterile and therefore perfect.
I signed my house in Florida and my beloved car over to Bobby. “Here,” I said. “Take care of these things for me.” I was heartsick at the loss of both, but especially my Z—this car had been a symbol of my dedication to my profession and my vehicle for wild rides in our neighborhood with Ashlee. But it was the only choice I could make, given that I really didn’t know if moving to Arizona would kill or cure me.
Susan flew out to Elgin first to scout out the house and pronounced it environmentally safe. My parents put me on the plane alone in West Palm Beach. The only way I could travel was with an oxygen tank; it was the first time I’d ever used oxygen on a plane, and I was embarrassed. All my life, I’d been strong and fit, but now I looked like an invalid. No, I didn’t look like an invalid. I had become one.
I sat in a special seat with the tank on the floor. As I breathed in life-sustaining oxygen and watched the ground fall away beneath me, I felt anxious and deeply sad. I was leaving the only home I’d ever known, my family and friends, and the career I loved. I didn’t know if I’d see any of these places or people ever again.
Despite this sobering thought, I had little energy to spare for reminiscing or contemplating the past or future. I had never felt more alone. I was trapped in this present moment, assaulted from all sides by the world around me, imprisoned in a body that had betrayed me.
6 • LIFE ON MARS
WHEN I ARRIVED IN TUCSON, Susan was waiting at the airport with Ashlee. I was too exhausted to make much conversation as she drove us to Elgin. I was engaged in the fight of my life—or, rather, in a fight for my life.
Everything had been stripped from me: my health, my profession, my friends, and the only place I’d ever called home. I felt exposed and vulnerable. Raw: that’s probably the best word to describe my state of being at that time. The only way I could keep myself from sinking into despair was to tell myself that this move to Arizona was only a temporary stepping-stone before I could escape this nightmare and return to my “real” life. I would breathe clean air and heal myself in Arizona. Then I’d go back to Florida and resume my normal life.
Meanwhile, staring out at the Arizona landscape surrounding us only amplified the shock I was experiencing after landing. My surroundings were so vastly different from Florida’s that I might as well have landed on Mars. Instead of the fast-paced city life, we were surrounded by expansive desert vistas. The foliage was made up of cacti and tumbleweeds instead of palm trees and jewel-colored flowers. Snow-covered mountains rose where I expected to see ocean, and the air was cold and dry instead of hot and humid. As far as our eyes could see—fifty miles in every direction—there were no cars, roads, buildings, or people.
Total isolation was just what I needed to get better, I reminded myself.
I’d seen pictures of the house, but I still wasn’t prepared for this reality. To reach it, we navigated a dirt road about a mile long. It had so many ruts and potholes that, under different circumstances, it could have been an exciting amusement park ride.
At the end of the road, in the middle of three barren acres surrounded by desolate high desert studded with saguaro cacti, the house rose like a tiny bump on the landscape against a backdrop of jagged mountains. Its brick color matched the desert terrain.
We quickly named our new residence “the bubble” because it was so sterile looking: no art on the walls, no carpets to muffle sound, no fabricated furniture, and no drapes. I was entombed in a tiny fortress of glass, metal, untreated wood, and brick. Everything inside the bubble was composed of inert substances to prevent the outgassing of volatile organic compounds, which triggered my symptoms.
Susan and Ashlee lived in the house with me, but Susan had to prepare meals in a small outbuilding fifty feet away from the house, because cooking fumes sent me into seizures. We called it the “cookhouse.” Susan set up a home office in it, as well as a play space for Ashlee.
I drank water only from glass bottles because plastics had an adverse effect on my body. I limited my diet to organic foods, though haphazardly, since I still wasn’t sure what might set me off. Back then, I had no idea that gluten was one of my triggers.
When Susan returned with residual scents on her body from h
er excursions to the outside world, it triggered my symptoms when we shared a bed. If that occurred, I had to sleep in a customized trailer parked on the property. This was an environmentally sealed unit made of steel and glass on wheels that protected me from outside chemicals.
I couldn’t travel long distances in conventional vehicles because of their unsafe plastic and vinyl materials, so we used my customized trailer to transport me to doctors for experimental treatments or emergencies, calling it my “hospital on wheels.”
Fortunately, because I was bombarded with fewer chemicals in the desert, my physical symptoms improved during those first few months in Elgin. I began feeling hopeful that my health was stabilizing. I could even go entire days without oxygen, except when something unusual happened.
For instance, shortly after moving into the bubble, a babysitter wearing perfume came over to pick up Ashlee for an outing. Seconds after her arrival, my fingers, toes, arms, and legs began twitching violently. Soon, my joints were cramped. I became dizzy and struggled to swallow. My vision blurred, and the room began spinning around me. I couldn’t speak. Suddenly, my legs gave out and I crashed to the floor.
When I awoke, Susan was frantic, hovering over me to wipe the sweat off my forehead and clean drool from my mouth. She was ghostly pale.
I blinked at her, still disoriented. The right side of my body ached, bruised from the fall. The muscles on the left side of my face didn’t seem to work right, and when I saw myself in the mirror, I looked like a stroke victim.
But I hadn’t had a stroke. I’d had a grand mal seizure.
This experience taught me something new: any time someone entered the bubble, he or she had to shower outside with special soap and change into freshly washed, unscented clothing, which we kept in an outdoor closet. Most people who visited were neighbors, friends, or babysitters. Sometimes they declined the outdoor shower and change of clothes, communicating with me through the door instead. For someone like me, who had always reveled in conversations with people, this isolation was torture.
Susan spent a lot of time in Tucson, shopping or eating out. She often took Ashlee with her. Other times, she went alone, taking breaks from her role as caretaker. She decided to return to school because she’d never earned a college degree. My family agreed to pay for her tuition, so she took courses in Tucson a few nights per week.
Although Susan hung out with Ashlee and me sometimes, I could feel that she was still extremely withdrawn emotionally. This made me feel uneasy and insecure, but I lacked the energy and skills to draw her out.
Besides, I sympathized with her plight. Susan hadn’t signed up for this situation any more than I had. She was stuck in the middle of nowhere, separated from her friends and missing out on any sort of normal life, trapped with an invalid and a small child in an alien landscape. She couldn’t go on dates with me, wear nail polish, or even get her hair done at a salon, because these simple things caused me to experience adverse reactions.
Ashlee was three years old by then, and I did my best to be an involved parent for her despite my physical limitations. We didn’t receive broadcast television stations, because there wasn’t any cable or satellite reception then in Elgin, so we had to resort to watching the same VHS tapes over and over. We must have seen The Wizard of Oz twenty times in the first few weeks there. Later, I would be deprived even of this small pleasure.
I also tried to read to my daughter. I’d discovered that even the ink letters on the pages of a book would set off an allergic reaction. Fortunately, I quickly hit upon a solution: I bought a reading box made of glass on three sides. I put the books inside it when we read; it had two holes underneath the top glass with built-in gloves. When I slipped my hands into the gloves, I could turn the pages. It was as if I were dealing with nuclear waste instead of my daughter’s beloved picture books.
One day, I saw Ashlee standing by herself in the yard. I felt terrible because she had so little to entertain her. There was nothing but nothingness all around us. There certainly weren’t any other children.
I decided that, no matter what toll it might take on my body, I would build her a swing set. I’m not handy by any stretch of the imagination, but I had a kit delivered and put the swing set together myself. It was probably a small miracle the thing didn’t fall down.
Between our December arrival in Elgin and April, my condition remained stable, or even improved in small increments. Suddenly, that spell of relatively good health came to a crashing halt.
When the spring wildflowers and desert grasses started blooming, the landscape was magically transformed into a thing of beauty. Unfortunately, it also became another hellish version of my kryptonite. The spring pollen caused my entire body to shut down with a vengeance. I couldn’t breathe, my throat burned, I had intense headaches, and my eyes were swollen shut. I began experiencing seizures on a regular basis. My respiratory system shut down, making it nearly impossible for me to breathe. We used my “hospital on wheels” to transport me to doctors who brought me back to life with cortisone shots, inhaled bronchodilators, or adrenaline.
Before my arrival, I believed that escaping chemicals would solve my health problems. I was mistaken and still understood very little about my own body and what could trigger these extreme and potentially lethal allergic reactions. Here I learned—quickly—that pollen could be as toxic to me as any chemical.
The glass bubble I’d created for myself started shrinking. When we first arrived in Elgin, I was well enough to eat at a natural foods restaurant that Susan and I both liked if I used my oxygen tank. However, by spring I could no longer enter the place without something setting my body off, so I had to wait in the car while Susan and Ashlee ate in the restaurant. After a while, I couldn’t do even that much. I stopped leaving the bubble because I was too ill to do more than lie in my bed or sit hunched over in my wheelchair, sucking on a tube connected to my oxygen tank.
I lost track of time and often didn’t know what day, week, or month it was. At times I didn’t even know where I was. I suffered constant physical pain with little relief, imagining it was like enduring Chinese water torture. Isolated from most of society, and with little hope of recovery from my illness and almost no belief in the medical profession, I descended into severe depression.
Probably one of my lowest points was a day that Susan told me she was going to Tucson. She’d hired a young woman to care for Ashlee; this babysitter, a lovely girl in her twenties, often came to stay with Ashlee whenever Susan went to a night class, worked out at the gym, saw friends, or ran errands. On that particular day, the babysitter arrived as I was lying on the cookhouse floor because I was too ill to stand. As Susan was leaving, she looked down at me for a moment, then put a bowl of food on the floor next to my head before stepping over my body and leaving for the day, as if I were her ailing pet rather than her husband.
Maybe, like an ailing pet, it would be better for everyone if I were put out of my misery, I thought, as I closed my eyes and lay there, scared and helpless.
• • •
When you become seriously ill, you learn who your true friends are. Many of my colleagues and friends from Miami and Fort Lauderdale were busy; when I stopped communicating with them, they went on with their lives and disappeared. I couldn’t really blame them; I was so ill by the time I was living in Elgin that I often couldn’t speak or function. It was hard for me to even comprehend words people were saying at times.
Fortunately, I did have a few good friends who stayed loyal and continued calling and writing me. Some even visited. They came from every phase of my former life: my friends Jeff and Tiny, who played in the marching band with me during high school; my college fraternity brother, Barry, who became my brother Bobby’s accountant; my friend Steve from law school; and my prosecutor colleagues Paul and Mark. By the looks on their faces, I could tell it was daunting for my friends to see me in this condition. I was a pale shadow of the man they remembered.
It was embarrassing for me to f
eel so vulnerable and exposed to my fellow adventurers, risk takers, and colleagues. But it was heartwarming to feel their love and loyalty. I could not have made it through this bleak time without them.
Another good friend who unexpectedly offered his support was Alex, who had been my hairstylist since 1978, when I was still in law school. Despite the fact that Alex had become one of Miami’s premier stylists, sought out by celebrities like Gloria Estefan and Julio Iglesias in his Fort Lauderdale salon, he and I had remained close through the years. Alex was a broad-shouldered, six-foot-five-inch Aussie. With his long, wavy blond hair and piercing blue eyes, he looked like an oversized Roger Daltrey from The Who.
In one of the most generous gestures extended to me during that time, Alex flew out to Arizona to cut my hair. When he saw what I looked like—I was down to a scrawny 145 pounds by then—this tall, burly man broke down and cried. But Alex quickly pulled himself together and went to work, creating a makeshift salon in the bubble. It was the first time my hair had been professionally styled since I’d been in Arizona, and it gave me some semblance of normalcy. You don’t realize what a privilege it is to have someone care for you until you can’t take care for yourself anymore.
• • •
In the early 1990s, very little was known about the links between toxic chemical exposure and human disease. I was blindsided by invisible chemical exposure leaving no evidence behind, like a stealth bomber that inflicts its damage in the dead of night without a trace. But I was lucky in one way: many people are struck down by environmentally induced illnesses before they launch professional careers and develop a skill set. In contrast, I was fortunate enough to have made it through law school and forged a successful career as an attorney. This made it possible for me to tap into my legal training to research every possible cure.