Poisoned Page 9

  • • •

  During my first visit with him, Dr. Rea—who served as the Environmental Health Center’s medical director—explained that he viewed his work as “pioneering.” I remained skeptical, but felt slightly comforted by the fact that he was a reputable physician. In 1963, Dr. Rea was on duty as a thoracic surgeon on the day President Kennedy was shot, alongside John Connolly, who was then governor of Texas. Dr. Rea is credited with performing the surgery that saved Governor Connolly’s life.

  In the intervening years, Dr. Rea continued his work as a surgeon until becoming ill from chemical sensitivity, a condition he associated with breathing in too much anesthesia in operating rooms. This spurred his interest in environmental illnesses and led to the founding of the Dallas Environmental Health Center in 1974, which, by the time I was a patient there, employed dozens of clinicians.

  Dr. Rea’s associate, Dr. Alfred Johnson, was my primary physician in Dallas. He explained that everyone has a different biochemical fingerprint and a unique capacity to detoxify chemicals. One person might be able to detoxify a chemical exposure thousands of times greater than another.

  Dr. Johnson’s goal was simply to stabilize my health enough so that I could live independently, albeit in environmentally controlled circumstances. Or as he put it, “Our aim is to teach you how to prevent yourself from dying.”

  An amiable Texan who served on the State Medical Board, Dr. Johnson explained that my diagnosis of “multiple chemical sensitivity”—also known as MCS—was a term that had only recently been coined for people who react to many different types of chemicals. According to him, the onset of this syndrome is triggered by a significant toxic exposure, such as a dangerous chemical or a pathogenic mold that injures the immune and nervous systems. When this happens, cascading hypersensitivities develop to most chemicals, pollens, and molds found in everyday environments.

  “Toxic chemical exposure damages the nervous system,” he explained, “and the symptoms resulting from such exposure are dependent upon which nerves have been damaged. If damage occurs to the brain, the onset of MCS occurs, resulting in a myriad of symptoms, including numbness, headaches, extreme fatigue, disorientation, and impaired thinking. In the worst cases, people become disabled or die.”

  Toxic exposures also lead to cancers, autoimmune diseases, and Parkinson’s, he added. The ultimate result of toxic exposure depends on each victim’s biochemical predisposition as well as the types and concentrations of each exposure.

  “In general, people in your situation often become outcasts,” he said. “Many of you have already been through numerous physicians and have taken all kinds of medications that didn’t work, or exacerbated your conditions and made you sicker.”

  That was certainly true in my case, I had to admit.

  “Patients isolate themselves to avoid exposure to toxins,” Dr. Johnson went on, “or because they’re embarrassed and fearful of their own unpredictable reactions to the environment. They are often misdiagnosed as having a mental illness, because they’ve stopped functioning in any ‘normal’ way.”

  When I first saw Dr. Johnson in 1991, physicians didn’t have advanced diagnostic tools—or even correct theories—to confirm exposure to environmental toxins. All they could do were skin tests to determine what an individual was sensitive to, from an allergy standpoint. Initially, Dr. Johnson ordered a series of tests that mostly involved taking fat samples from my buttocks to determine what chemicals my body was storing so that he could pinpoint my initial toxic exposure.

  Besides being a human pincushion, my regime at the Environmental Health Center involved a variety of diets, colonics, and other detoxification therapies. I spent a lot of time hooked up to an IV in a room with up to twenty people also being infused with various nutrients, antioxidants, and medications. Dr. Johnson put me on a rotation diet, so my immune system wouldn’t become overexposed to the limited foods my digestive system could tolerate. He also believed in daily saunas as a means of sweating toxins out of my body and making my symptoms more tolerable.

  Being treated at the clinic felt like a full-time job. Daily, I’d board the shuttle to go there, spend the day being poked and treated, then stagger back to the shuttle and return to the leper colony. Most of the other patients were staying in the same Seagoville housing community. Those who could tolerate it stayed in a nearby motel instead of the dismal leper colony.

  Sadly, despite the doctors’ efforts and mine, my condition didn’t improve.

  • • •

  In talking with other patients, it became clear that my condition was as bad as any they’d ever seen. A few even brazenly told me I might as well make sure my legal and financial affairs were in order, because they didn’t expect me to make it out alive.

  It didn’t help my state of mind that Susan, who had promised time and again that she would be joining me, now sent word that she wasn’t coming. There was no fight, no argument, nothing like that. She simply said she wasn’t coming, despite Dr. Johnson’s treatment plan including a “transfer factor” from Susan’s blood to mine.

  The procedure was a simple one: Dr. Rea would take some of Susan’s white blood cells—the “transfer factor”—and inject them into me to boost my immunity to whatever chemicals we were both exposed to in our home environment. Susan’s immune system clearly tolerated these chemicals, but mine didn’t. Transfer factor was supposed to convey Susan’s immunity into my body. It was an experimental procedure but a safe and simple one.

  Susan wanted no part of it. During the time I was trapped in the leper colony, she had moved out of the bubble in Elgin into an environmentally controlled home on the outskirts of Tucson. This was a home I had found before leaving Arizona. It was located on three acres of land and, because it had been retrofitted by another patient of Dr. Rea’s with air filtration locks, among other things, it was the perfect place for me to come home to once I finished my treatments in Seagoville.

  “What do you mean, you’re not coming to Dallas?” I asked Susan. “I need you here.”

  “I’m sorry, Alan, but I can’t do it,” she said. “I have to stay home and work on personal issues.”

  It was such a vague and awkward excuse that, even now, years later, I can’t forget her “explanation” for why she couldn’t join me in Dallas. I realize now that Susan was struggling with the idea of having to live her life with an invalid, and she felt guilty about that struggle. That’s why she couldn’t bear to face me in person. But even though I understood her complicated emotional state and sympathized with it to some degree, I felt abandoned by my wife. There’s no other way to put it. I tried not to judge her actions—I knew that family breakups were common for people suffering from chronic illnesses—but I was devastated.

  Even worse, I missed our daughter. Ashlee obviously didn’t comprehend much of what was going on; our phone conversations were all too brief and infrequent, since I could only call in the evenings and Susan usually claimed Ashlee was either unwilling to come to the phone or already asleep. I missed my little girl desperately and had horrible nightmares of dying without ever being able to see her again.

  I didn’t make many friends in Seagoville. During conversations with residents of this environmental illness community, I discovered they had unique rules. We didn’t talk about our former occupations, our backgrounds, or our families. We’d left all of that behind. Instead, we typically started our conversations with, “What got you sick?” It felt like I was an inmate talking to my fellow prisoners about their crimes.

  One of my favorite people in Seagoville was Tom, a big-bellied tugboat captain who started suffering from MCS after helping clean up the Exxon Valdez oil spill in Alaska. He began suffering flu-like symptoms after a cleanup helicopter flew over the site and sprayed chemicals on the spill, dousing him as well.

  Tom made a big impact on everyone he met because he was such a fun-loving, lighthearted, bigger-than-life personality who added levity to almost any situation—including our dire pre
dicament. He had no problem coming right out and admitting to Dr. Rea that he practiced his four-day rotation diet by eating fast food from McDonald’s one day, Burger King the next, then Taco Bell, and so on. Boy, did that guy like food, and it showed. But he wasn’t the least bit self-conscious about his appearance or his lifestyle choices. His attitude seemed to be “Hey, here I am. What you see is what you get.”

  Tom gave us all a good example of how necessary laughter is in the face of adversity. There’s probably no better weapon against your darkest hours.

  I also formed a close bond with Anthony, a former medical student who fell ill after developing a hypersensitivity to formaldehyde and other laboratory chemicals. He wasn’t as sick as I was, but he struggled, and he didn’t have financial resources or family.

  “You know, Alan,” he said one day as we were sitting together, “our situation reminds me of moths that land in a swimming pool. Most just flap and flap their wings until they wear themselves out and drown. But a few get to the edge, gain a foothold, dry their wings off, and fly away. You’re going to be one of those moths that fly away.”

  I could only hope he was right.

  After five months of barely surviving in that horrible Seagoville trailer, I told Dr. Rea I’d had enough. It was time for me to leave. In addition to feeling frustrated by my failure to get better, I was feeling angry over the financial cost of my treatments. On the other hand, I couldn’t direct those feelings toward Dr. Rea and Dr. Johnson. They, at least, were among the few who believed my illness was “real,” and they were trying their best to humanely treat a desperate patient population.

  Susan finally visited Seagoville to try the transfer factor injections before I left. The treatment didn’t take, but at least I knew my wife still cared about me.

  When I announced I was finished with Seagoville and my treatments at his center, Dr. Rea suggested one more option: a patient of his, Carla Tyson, the daughter of former Tyson Foods executive Don Tyson, had successfully recuperated from her chemical sensitivities in a three-story, 10,000-square-foot stone castle carved out of a cliff on the Gulf of Cortez in Cabo San Lucas, Mexico.

  “Do you want to try and recover there?” Dr. Rea asked.

  “Let’s see,” I said. “You’re asking if I’d rather stay in a crappy little mobile home on a dry and dusty Texas prairie, or in a beautiful castle above a sandy beach bathed in fresh ocean breezes? What do you think?”

  Still, I decided to check the place out myself before moving there—a move that would be complicated by my special needs. I asked Dr. Rea for Carla’s phone number and called her. I explained that I was a patient of Dr. Rea’s, then asked her about the castle and whether staying there had really improved her health. (By this time, I’d been burned enough to view everyone and everything that promised to make me healthy again with a certain degree of cynicism.)

  “I just want to know one thing, Carla,” I said after we’d chatted for a few minutes. “Did you actually get well staying at the castle?”

  “I sure did, honey,” Carla answered in her Southern drawl. “The ocean air is so clean and so pure there, it’s like you’re on Gilligan’s Island. You’ve got to try it! The castle is amazing. When you get down there, you call me and let me know how you’re doing, okay? I go down to Cabo San Lucas every now and then just to get recharged for a weekend. Will you do that? Will you call me?”

  I promised that I would and made the necessary arrangements with the castle’s owner to rent the place. When I excitedly told my friend Anthony about my plan to leave Seagoville, he asked if he could join me and volunteered to split the costs. I immediately agreed. I felt better going off to Mexico with someone else. In addition, since Anthony was healthier than I and a far better cook, I volunteered to pay him to make our meals.

  Escaping the leper colony and persuading Susan to join me in Mexico with Ashlee provided me with a small but bright glimmer of hope. I offered to fly them to Cabo, excited about a possible reconciliation, but Susan declined to move there with me. She would stay in Arizona, Susan said, “but I promise that Ashlee and I will visit you every weekend.”

  Just before I left Seagoville, Susan sent me a birthday card. In it, she promised to stand by me, writing, “No matter how bad it gets or what happens to you, look to the past and I was there, look to the present, I’m here, and look to the future; I’ll be waiting for you.”

  I kept the card close to my heart, longing to believe her.

  8 • A CASTLE BY THE SEA

  ONCE ANTHONY AND I ARRIVED in Cabo San Lucas, I discovered that the “castle” was aptly named: it had a forbidding medieval décor, with stone walls and floors. It was perched on a high cliff overlooking the Pacific Ocean and blessedly clean of chemical compounds, as Dr. Rea had promised. We gleefully moved in, feeling like prisoners who had somehow managed to break free of Seagoville.

  “It’s our Papillon!” I exclaimed, referring to a conversation we’d once had about that movie, which features an amazing prison break.

  “The moths will not die in the pool,” Anthony agreed, making us both laugh as we placed our five-gallon bottles of drinking water and oxygen tanks against the wall.

  In reality, though, the castle felt as much like a prison as Seagoville, despite the welcome sound of crashing surf. On the first floor, the only furniture was a glass kitchen table and a few chairs. My bedroom, located in a second-story room with a balcony overlooking the ocean, had nothing more than a cotton mattress on the floor surrounded by mosquito netting draped from wooden beams. To me, it looked like a casket.

  I had arranged for Susan to buy organic food and ship it from Tucson to the Cabo San Lucas airport, a tiny airstrip in the middle of nowhere. Anthony and I hired an ex-con who was living down in Cabo to pick up the food for us and drive it to the castle. We had also bought bottles of filtered water in Texas, which Dr. Rea’s son loaded onto his truck, along with our organic bedding and six months’ worth of other supplies that we considered essential to our daily lives. Dr. Rea’s son drove the truck from Texas to Mexico.

  If we hadn’t had those minimal supplies, I don’t know how I would have survived that place. It was just as bad as Seagoville. There was no air-conditioning, and the windows had no screens. During summer months, the humid heat was unbearable, and the place was infested with mosquitoes. Despite the bare floors and walls, I had trouble tolerating whatever chemicals they’d painted on the floors. At night, I slept on a hammock outside the second floor balcony after Anthony had encased me in mosquito netting so that I wouldn’t get eaten alive.

  As in Seagoville, I gave my best effort to remain in contact with Ashlee, mailing her messages and songs I’d record on cassettes every week using a small tape recorder. Often, these were sweet children’s songs, like “House at Pooh Corner” by Kenny Loggins, which I’d sing and record while playing my portable keyboard synthesizer.

  I worried that my health would continue to deteriorate to a point where I might not be able to travel and see my daughter again, or—God forbid—that I might not even live long enough to see Ashlee finish school, grow up, get married, and have children of her own. These fears seemed well-founded, especially when, out of the blue, Susan mailed me a “Dear John” letter. The letter was long and convoluted, but basically said she couldn’t do this anymore and needed to “move on with my life.” Her words sent me spiraling deeper into despair.

  Apparently, Susan had moved out of the house we’d rented in Tucson and was now living in an apartment closer to the city. She’d gotten a job, too—all without telling me. I was heartbroken almost as much by her deception as I was by her decision to leave. But I knew there was nothing I could do to force her to stay. I had to accept her decision.

  Meanwhile, with no phone, television, radio, or newspapers, Anthony and I were effectively cut off from the world. I felt isolated and alone as I hit a new low.

  I had always prided myself on being resourceful, but I couldn’t see how I was going to survive. Part of me didn�
��t even want to, now that Susan had left. Besides the debilitating heat and humidity of Cabo, there was mold in the castle, and the air was thick with smoke from burning garbage and pesticides being sprayed.

  Fortunately, the minute they heard the news about Susan, my parents, brother, and sister flew out to Cabo San Lucas to spend Thanksgiving with me. Over dinner, we had a family powwow about where I should try living next, since Mexico clearly wasn’t the solution. Although we didn’t come to any conclusion, before my family flew back to Florida, we all agreed that I needed to be near Ashlee in Arizona.

  To my surprise, soon thereafter, I received another letter from Susan, admitting she’d made a mistake in asking for a divorce. “I’m sorry,” she said. “I want to get back together with you.”

  Of course, I had no idea that she’d been fired from her job. All I knew was that I was glad my wife hadn’t left me.

  My health continued spiraling downward. I couldn’t cook or walk without crutches. The castle was three stories high and my bedroom was on the second floor. I didn’t have the strength to navigate stairs. Even if I could have gone down the stairs, I didn’t have the strength or cognitive ability to drive my car. I was a prisoner.

  One day, I asked Anthony to call Carla Tyson the next time he drove into town to get our mail from our PO Box. We didn’t have our own phone line at the castle and we were half an hour’s drive from any sort of civilization.

  “Just tell her how we’re doing,” I said. “She asked me to call.”

  To my surprise, one day Carla showed up unexpectedly, walking right into my bedroom like she owned the place. I was lying in the hammock, too weak to move. She stayed the whole day. The only other person I had face-to-face contact with was Anthony, whose health actually did seem to be improving with the sea air. He was still doing all of the cooking, and whenever I needed something, he’d go into town and get it.