Poisoned

by Alan Bell

  Finally, though, Anthony became so concerned about my health that he called my family and told them they had to come get me. “You have to do something, or Alan’s not going to make it,” he said.

  Susan flew to Cabo San Lucas at that point. “Alan, you can’t live like this anymore,” she declared. I could hear the fear in her voice; I’m sure she was shocked by my appearance. “I’m taking you back to Arizona with me.”

  I returned to Tucson in an air ambulance, tethered to my oxygen tank, clinging to my one comfort: I was going to be reunited with my wife and daughter at last.

  • • •

  Despite everything she and I had been through, it was clear that Susan still harbored some illusion that I could live a semi-normal life. Our ranch house outside of Tucson, like the smaller place in Elgin, was built to accommodate patients with chemical sensitivities. It had air locks and a special air-filtering system. There was an outdoor shower for anyone who had been outside the house to rinse off outdoor pollutants before entering. In other words, it was bigger and more comfortable, but still as much of a bubble as the Elgin house. It was exactly the sort of chemical-free environment I needed to survive.

  However, when we arrived in Tucson, I discovered that Susan had furnished the place with a brand-new couch, chairs, drapes, rugs, and television. I’m sure she had fun decorating, but I couldn’t tolerate any of it and told her we had to get rid of everything immediately.

  “The house is safe for me, but these furnishings aren’t,” I explained.

  “You can’t possibly be hypersensitive to the TV,” she argued.

  “Yes, I am,” I insisted. It was true: through speaking with other patients at Seagoville, I now understood that televisions emitted electromagnetic frequencies that triggered adverse bodily reactions.

  If I came near a TV when it was turned on, I’d feel the muscles in my chest contract and experience uncontrollable twitching in my arms and hands. My heart would start beating erratically and I might even suffer a seizure. I didn’t understand why this was true, but it definitely was: I could tell if a nearby TV was turned on, even if the sound was off and my eyes were closed.

  Once we removed the television, most of the furniture, drapes, and carpets, the only items left in the house were an old leather couch, a glass table and chairs, and organic cotton beds. There was no furniture in the living room, and we kept the television outside. Ashlee had toys in her bedroom; that was fine, as long as I never entered her room.

  When the summer temperatures soared to 120 degrees, it became clear that Susan and Ashlee needed air-conditioning, which I couldn’t tolerate. We rented an apartment five minutes away for them to live in, except for the few hours they spent with me during the cooler hours of the day. Susan also continued taking classes at a school in Tucson, and ventured out to the mall, movies, and restaurants. Occasionally, she’d take Ashlee with her to visit her grandmother, who lived in Las Vegas.

  Even as bare as the house was, one of the rooms still smelled like perfume. The smell was infused into the walls, so I lined them with sheets of tinfoil to encapsulate the smell. From then on, we referred to this as my “war room,” the place from which I waged a war against my illness, making phone calls and writing letters as I doggedly pursued a cure.

  My best bet was pursuing alternative medical treatments, because orthodox medicine had nothing to offer me. I read any book I could, still using my reading box, and relied on the telephone as my lifeline to the outside world. I networked with other patients, read medical articles, and called doctors who had helped other patients. When speaking with these doctors, I painstakingly quizzed them about their treatments, costs, and history of results.

  My time as a prosecutor had prepared me to be a fighter. I had practiced law in what was essentially a war zone in Miami. This was a different kind of battle for survival, but it felt like a war nevertheless—one where I fought ongoing attacks from pain, fevers, blurred vision, poor digestion, and cognitive problems. I spent most days lying on the bed or couch, or even stretched out on the floor if it was especially hot. I couldn’t go outside without being on oxygen; my only means of exercise was to walk back and forth along our long tiled hallway. On my best days I tried to do several laps in this tedious way. Sometimes I also forced myself to do push-ups and sit-ups on the floor. I had a sauna, meant to sweat out the toxins from my body on a daily basis.

  All of these efforts got me exactly nowhere. I found no cure, just a lot of snake oil sold by medical “professionals” eager to take advantage of desperate patients. My time in Seagoville, Dallas, and Mexico had taught me that my illness was chronic. My immune and nervous systems were damaged beyond repair. Dr. Rea, Dr. Johnson, and the patients I’d met in the past year had given me the information I needed to survive in a bubble.

  As a prosecutor, I had never given much thought to the victims of crimes. Back then, dealing with victims was simply a means to the end I sought: to incarcerate evildoers and prevent them from doing any more harm. I never identified with any victim’s plight because it seemed like a pointless waste of energy and time. I was focused on beating the bad guys and putting them away, first and foremost.

  Now that I had become a victim myself, my perspective changed. My heart suddenly filled with empathy for all of those people who had been injured or, in the worst instances, murdered. I had witnessed firsthand the tragedies inflicted upon them and their families. If I ever got out of here, I vowed, I would find some way to help those who didn’t have the means, skills, or resources to help themselves.

  I felt passionate but not overly optimistic about the possibility of my achieving this goal, given my current state. In many ways, my life resembled that of the stranded astronaut in the film The Martian. My only course of survival was to protect myself from the atmosphere all around me in this alien Arizona landscape. I couldn’t emerge without my oxygen supply, and I had to be creative and resourceful to survive.

  How long could I live this way? By some conservative estimates, I might last another five years if I was lucky. Many times, I thought of suicide. In fact, not a day passed without my having this persistent thought: it would be better for everyone if I just ended things. Why put my family through this hell? Why should I bother waking up every day, when all I desired was the ability to fall asleep and escape the agony of my own body?

  Each morning, I’d open my eyes in bed, and the first thing I’d see was the ceiling spinning above me, as if I were on some horrible amusement park ride. I could no longer physically tolerate sleeping with Susan, so I was alone on a cotton mattress thrown on the floor in a room that was otherwise empty. No nightstand, no dresser, no lamp, no radio or TV, no chair: nothing but me on this pallet. And some nights even that was too much. I had to sleep out in the trailer, my little hospital on wheels parked beside the house.

  Some days, I couldn’t get out of bed because I was too weak or the vertigo was too extreme. And any time I was conscious, I was in pain: burning eyes, throat, and lungs; throbbing joints and muscles. I had no choice but to cope with the pain because I couldn’t take any medications.

  Whenever I could get out of bed, I’d sit in the portable sauna to sweat out toxins from my body, then gravitate to a chair in the kitchen and eat one of my five digestible foods: quinoa, almonds, cod, lentils, and mixed salad greens. I might shuffle into the war room, where I’d make phone calls to doctors and quacks, desperately searching for answers nobody could give me. I forced myself to exercise, though that meant walking back and forth along the hallway like a hamster on an exercise wheel, going nowhere. I felt like I was in my nineties instead of my thirties.

  Still, I kept experimenting, especially that first year in Tucson. Since nobody could tell me what chemicals I could tolerate, I had to serve as my own lab rat, exposing myself to one substance at a time. I felt like a stroke victim, slowly learning to manage my body, one muscle at a time.

  Everything that other people take for granted, I had to test, until I found things
that worked for my impaired body. For starters, I had to figure out how to fulfill my most basic need: finding water to drink. Where do you get your water, if you can’t drink it from the tap because of the chemicals, and you can’t drink it from plastic bottles because of the chemicals in the plastic?

  How do you brush your teeth or take a shower if you have a body like mine? I couldn’t use toothpaste, shampoos, soaps, or shaving creams. I experimented with thousands of products, ultimately giving up on nearly all of them because my body wouldn’t tolerate chemicals in even the mildest products.

  Clothes, too, were a problem. That “new clothing” smell caused all hell to break loose in my body: my skin itched and burned, as if any place on my body that had touched the new clothing was on fire. Ultimately, I discovered I could only wear organic cottons. Even then, I had to wash the clothes multiple times. That meant finding detergents I could tolerate. I couldn’t even handle residual detergents and fabric softeners previously used in a washer or dryer.

  That one mattress I could sleep on was also hard to come by. I can’t even count how many mattresses I bought and then threw away because the flame retardants and other chemicals caused me to have seizures. Whenever I lay down in bed, if my arms and feet started twitching, it was a sure sign that I’d better leap right up again.

  Over time, I developed a regimented routine designed to keep me safely enclosed in my new bubble, learning partly through my own experimentation, and partly through the networks I’d built by phone and in Seagoville, where people were always counseling one another about what might—and might not—work for any individual body chemistry.

  My fellow sufferers with multiple chemical sensitivities had, as I had, resorted to stripping everything out of their lives and starting over, piece by piece, reincorporating things gradually. We needed to expose ourselves to things one at a time, bit by bit, to see what we could tolerate.

  Many drove ancient cars, as I did, thereby preventing reactions to chemicals found in new leather or fabric seats. They even stripped all fabrics and leather out of the cars and drove around in metal shells.

  Like me, they threw their wardrobes away and started over with cotton fabrics. Before new clothing could be worn, the clothes had to be soaked in vinegar to neutralize the formaldehyde and then washed in baking soda to get rid of the vinegar.

  I was lucky—if you can call it that—to be able to live in an actual house designed for someone with chemical sensitivities. I had family support and the financial resources to make that possible. However, along my journey to solve my own medical mystery, I encountered others who are far less fortunate. To escape chemicals found in ordinary dwellings and office buildings, they live in tents or sleep in cars, as I had in California, searching for any small measure of relief.

  These people lose their jobs, incomes, homes, friends, and families because they are forced to live on the fringes of society. They often lack the support of anyone who believes in them and rarely have the education or resources I possess.

  Some of these unfortunates actually do the unthinkable and end their own lives. One woman I met in Seagoville eventually shot herself. Another guy I knew—wealthy, educated—found a way to gas himself to death in his own living room.

  But I couldn’t do it. Each day, I looked at Ashlee, and knew I couldn’t have her growing up in the chilly shadow of her father’s suicide.

  • • •

  A funny thing happened as I continued to survive: I became a celebrity.

  It all began with an article that appeared on the front page of the Tucson Citizen on January 24, 1992, entitled, “Imprisoned by His Own Body: Tucsonan struggles to find cure for mysterious illness.”

  The features reporter interviewed me a few days before the article came out, and I was amused to see that the first lines of the piece were every bit as dramatic as the headline: “He is a ‘universal reactor.’ If that sounds like someone in the middle of a meltdown, you’re right.”

  The article described my previous life: long workweeks, running, playing racquetball, and spending time with family. It recounted how I moved into a new house that was heavily treated with chlordane pesticides like many new homes in Florida, and also mentioned my move into 110 Tower. The photograph accompanying the article showed me standing behind the glass door of my environmentally safe bubble, so close to the outside world, yet unable to enter it.

  Susan’s quotes in the piece made me wince, as I read what kind of hell I was putting her through: “All you think about is how to live safely, how to find a safe place to sleep. We can’t go out to dinner, we can’t go visit anyone, we can’t even go to a movie. It’s the stress not only of being sick but of being an outcast.”

  In a cruel irony, my story shared the front page with an article describing how President George H. W. Bush wanted to increase the NASA budget and send humans to walk on the moon again and maybe on to Mars. The politicians were making plans to send humans into outer space, while I couldn’t even walk out my front door. Something important was happening here on Earth, but nobody was telling the story.

  After my profile ran in the Tucson Citizen, a number of other media outlets began contacting me. Jerry Brown, who hosted a national talk radio show between his terms as governor of California, interviewed me. In doing so, he not only showcased my plight but talked about how it reflected the widespread problem of environmental chemicals affecting human health. I credit him with being among the first to put my face on this issue. It would be a long time before I realized how important that would be.

  • • •

  During this time, I received a phone call from an ex-girlfriend in Florida who had heard about my condition. She told me about a psychologist, Dr. Dan Baker, whom she’d met at Canyon Ranch, a Tucson health retreat. “He specializes in counseling families with chronic illnesses,” she said. “Maybe you should see him.”

  I agreed at once. My relationship with Susan remained tenuous; we could certainly use some outside support.

  There was just one problem: I couldn’t leave the house. When I explained this to Dan on the phone, to my astonishment he said, “Well, I’ll come see you at home, then.”

  A week later, Dan showed up at the door and went through the requisite steps of showering and putting on clothing washed in unscented detergent before entering the house. He was a very straightforward guy with the air of a strict college professor. At the time we met, he was writing what would become a series of bestselling books focused on teaching people how to live well in stressful situations. I immediately liked him. We arranged to meet for therapy sessions every week.

  In the beginning, Dan met with us together as a family and also talked to Susan and me individually. His initial goal was to provide us with coping tools to help us navigate through my illness. Dan spoke with us about how important it was to recognize our feelings of loss, grief, anger, and depression as normal for our situation.

  Working one-on-one, Dan helped me cope with being trapped in this safe yet isolating place by teaching me about the mind-body connection. He demonstrated visualization techniques I could use to separate my mind from the prison of my body. For instance, he taught me how to imagine a future I wanted to live—in essence, to create my own reality rather than live in the painful present.

  On one occasion, he asked, “If you had a free pass for a day, what would be your wish?”

  Immediately, I said, “I’d want to take Ashlee to Disneyland.” Disneyland seemed like the gold standard of what every child would love.

  “Okay,” he said. “What would you do there? Tell me where you’d start in the park, what you’d eat, and what rides you’d go on.” He encouraged me to imagine that trip to Disneyland with all the details.

  At first, I was worried that such a visualization might make me sad. Why think about things I couldn’t have?

  But Dan coaxed me into it, explaining that having hope for a better future is the best way to live through difficult times. Once I got started, I had no t
rouble describing my fantasy, from the rides Ashlee and I would go on to the food we would eat. I almost felt like we were there.

  When I’d finished fantasizing about that, Dan pushed me a little more. “Okay, if you could spend another day out, what would you do?” he asked. “Not for your child, but for you.”

  I thought for a minute. I was a University of Miami alumnus, to the point where I bled orange and green, our school colors. I nearly always wore my university sweatpants and shirts in the bubble, despite the fact that they’d been washed often enough to be tattered rags nearly falling off my frail body. I wore these team-themed clothes like a uniform because the clothing anchored me to my past—a time when I was healthy and athletic.

  “I know exactly what I’d do,” I told Dan. “I’d go to a national championship football game between my alma mater, University of Miami, and the University of Nebraska, because that’s your team. We’d sit in the stands with a hundred thousand fans and watch the best team win. I’d be surrounded by perfumes, colognes, and fabric softeners, and nothing would bother me. I’d just cheer on my team like the good ol’ days.”

  “Great,” Dan said approvingly, though he looked a little surprised to be included in this visualization. “And who wins the game?”

  I grinned. “Miami kicks Nebraska’s ass!”

  Another day, Dan asked me what I missed most about my old life. “Are there any memories of doing things that made you happy?”

  “Playing music,” I said wistfully. “I loved being in marching bands, jazz bands, and rock bands. I played the drums and wrote music. I’d listen to albums and transpose the music for all of the different instruments in my band. I really loved doing that.”

  “What about playing music again?” Dan suggested. “Think you could do that?”

  I shook my head, grief-stricken. “I can’t play drums anymore. I have too much pain in my joints and tendons.”

  He frowned for a minute, considering this. “What about your fingers? Are they okay?” he asked.