by Alan Bell
As word spread about our foundation, I received more calls and letters from people expressing their support.
Congressman Joe Kennedy called to express his support for our upcoming summit. Actress and singer Olivia Newton-John, who believed her breast cancer was partly caused by environmental factors, also applauded our efforts, as did Ross Perot, who met with our foundation president. Kenny Loggins offered his endorsement, along with actors Matthew Perry and Alan Thicke.
As Bobby and I finalized plans for the summit in 1995, I realized we needed a promotional video to capture the essence and goals of the Environmental Health Foundation. Although I couldn’t leave the bubble most of the time, I called people, did paperwork, and even managed to find a videographer.
I asked Ralph Colwell, who owned a video production company, to do the job. He visited me, probably trying to figure out if I was for real or just another nut in Tucson. We stood outside on my patio so his cologne wouldn’t set off any hypersensitive reactions.
Ralph cared a great deal about our environment. He was convinced that our cause was worth his time. He offered to attend the Biosphere 2 conference and videotape the scientists and physicians meeting under one roof.
After I’d hired Ralph, we agreed that we’d need a famous spokesperson to host the video. “Maybe an American folk hero sort of celebrity,” I mused.
“I might know somebody,” Ralph said, but he left still holding his cards close to his vest.
Not long afterward, Ralph called me. “Listen, Alan,” he said. “I know Gene Cernan, the commander of Apollo 17 and the last American to walk on the moon. I think he’d do the video.”
How fitting, I thought with a grin. As a freshman at the University of Miami, I had driven with my father to Cape Kennedy for the launch of Apollo 17 with Cernan as command module captain. I told Ralph this, adding, “I can’t think of a better spokesperson.”
Sure enough, Ralph asked him, and Gene signed on immediately. The pieces were in place.
• • •
The only person missing from the summit was me. Although I had created, planned, and organized the event, I was too ill to attend it.
Still, I was determined to make my voice heard. Ralph filmed my introductory speech so that I could address the conference participants via a video feed. As I began speaking, I presented the same cheerful, hopeful facade my father had adopted years earlier while selling Florida real estate.
“On behalf of the Environmental Health Foundation, I’d like to welcome each and every one of you here today,” I began. “This summit brings together some of America’s finest scientists under one roof for the purpose of putting together a national blueprint for the direction of environmental research in the twenty-first century. Millions of American lives are dependent on what we do here today.”
I went on from there, describing what led us to establish the foundation and stating our goals. Then Dr. Kenneth Olden, the director of the National Institute of Environmental Health Services, gave the keynote address, congratulating the Environmental Health Foundation for bringing together people “from academia, the private sector, government, and industry to map out and plan an environmental health science research agenda for the year 2000 and beyond.”
In his address, Dr. Olden expressed his interest in having a private-public partnership between our foundation and the National Institutes of Health. Can you imagine? Here was a director of the all-powerful NIH—a George Bush appointee—excited about a “partnership” with my fledgling brainchild. Wow!
The summit’s priorities were divided into five categories of environmental impact: children’s health, the respiratory system, the immune system, the nervous system, and the reproductive system. As the scientists worked through the next few days, I thought of them constantly.
I felt like a star football player sidelined for a busted knee, watching the game unfold without me: I was yearning to be called onto the field and frustrated I couldn’t take a more active role. Although I was aware that my life was taking on a deeper meaning, I was too sick to be truly excited or joyful.
While on some level I was thinking, “Oh, wow, this is actually happening. This is really cool,” my emotional highs and lows were gone. No matter how good the news was in my life—or how horrible—I had learned to cope with things I couldn’t change by flatlining emotionally.
Remember the movie Rocky? How he gets hit and hit and hit, to the point where the pummeling doesn’t even hurt him anymore? It was like that for me. I would always get up. I knew that much. But I couldn’t feel much joy in my accomplishments.
Bobby attended every day of the conference, as did Ashlee and my parents, who were glad to have a positive event to focus on after Judi’s death. While my image was projected on the screen, Ashlee—who was only seven years old—walked around the auditorium, staring up at these white-coated doctors and scientists.
As young as she was, Ashlee understood two things: Her daddy was sick enough to be trapped in a cage, but he was the one who had gotten these people together. She also knew that the summit participants were scientists trying to understand and cure illnesses like mine.
At some point, Ashlee must have thought, “Wait a minute. These doctors are helping other people. Why can’t they help my dad?”
The very first day of the summit, she began asking scientists that very question, going up to each one in turn and saying, “Excuse me, I’m Ashlee Bell. You know my daddy. Can you help him?”
One of the scientists—to this day, I have no idea who it was—finally scrawled a name—Dr. Jay Seastrunk—and a phone number on a piece of paper. He handed it to Ashlee, saying, “Here. This guy might be able to help your daddy.”
Ashlee hung on to that scrap of paper all day. When Bobby brought her back to my bubble that night, she handed it to me. “Here, Daddy,” she said. “You go see this doctor. He’s going to help you.”
I stared at the paper dully. “How? What kind of doctor is he?”
“I don’t know,” Ashlee said. “But a scientist said he’s the one who can help you, Daddy. You have to go!”
I took the piece of paper out of her hand and mustered a smile. “I’ve heard this a million times, sweetie,” I said tenderly. “All these doctors do is take my money and make me sicker.”
There were few people in the world more stubborn than this redheaded, seven-year-old girl. Ashlee wasn’t about to let me off the hook. Throughout her short life, she had simply accepted my condition because, to her, that’s the way I always was. Now, though, she had started to notice how radically different the lives of other people were from ours. She was also painfully aware that her father could die at any time.
“You’ve got to fight, Daddy,” she begged. “You can’t give up.”
I took a deep breath and shook my head. “Ashlee, I’m stuck in this bubble and that’s the best I can hope for, but I’m not giving up. I’m fighting for others. You know that!”
“You think you’re really helping people, stuck in here?” she demanded. “Think how many people you could help if you got out!”
I sighed. Clearly, she wasn’t going to let this go. And what did I have to lose, really? One more doctor or one more quack, what did it matter? I would be no better off than before if I saw this guy, but at least I could make Ashlee happy.
“All right, honey. You want to know what this doctor’s treatment can do? Fine. I’ll check it out.”
• • •
Months passed before I called Dr. Seastrunk, however. Despite my ongoing health issues and isolation in the bubble, I remained driven to do whatever I could to focus on our newborn Environmental Health Foundation. Bobby and I had determined that our research priorities would be long-term, low-level toxic exposures including sick building syndrome and Gulf War syndrome, which had affected thousands of veterans returning home with chronic illness.
Bobby gave seed money to launch the foundation. Beyond that, we pursued grants from corporate and governmental entities. Our
aim was to support unbiased medical institutions through fund-raising activities and private donations, without having to align ourselves with specific political or special-interest groups. We also continued building awareness of the foundation through direct mail and a grassroots effort similar to the Muscular Dystrophy Association’s campaigns.
One day, I spoke to a woman on the phone who also suffered from multiple chemical sensitivity. I respected her because she was an attorney who had graduated from Harvard Law School. She claimed she was cured now and swore that the reason she’d beaten her illness was a Baptist minister in Atlanta, Georgia, who called upon Jesus to heal people with environmental poisoning.
I was skeptical, naturally. But, oh, how I wanted to escape that bubble. I was tired of living like a Martian, especially when that meant not being able to go out and about with my daughter. Before she left me, Susan made videos of Ashlee’s important moments, like her school performances. But watching them only sent me deeper into a dark place within myself. I ached to support Ashlee’s big accomplishments in person.
So off I went to Georgia, embarking on what would turn out to be my most outlandish cure quest yet. My trailer—the hospital on wheels—was hauled down to Atlanta ahead of my flight so that I could sleep in it. Once I arrived, I was disheartened to hear the preacher tell his religious leper colony that demonic forces caused environmental illness and that we could only be cured by accepting Jesus into our hearts.
For the next few weeks, I tried to swallow all of the stuff this guy was trying to sell us, but I just couldn’t do it. The nail in that particular coffin was hammered in by Hurricane Opal, which charged into Atlanta in October 1995 as I was sleeping in my hospital on wheels. The preacher’s biggest claim to fame was that he once used the power of Jesus to turn away a hurricane while living in Tampa, Florida, saving his whole congregation from destruction.
Now, Hurricane Opal’s raging winds and punishing rain made it clear how puny this man’s powers actually were. While I rattled around in my tin can, I thought, “Enough! That’s it. I’m out of here.” I wasn’t surprised that the guy was a fraud—in fact, I’d been saying that to other people there—but I was definitely surprised that, for the first time ever, a hurricane hit the Atlanta area. In my most cynical moments, I’ve wondered if this was God’s little joke, and a way of exposing the preacher’s fraud to others. Whatever the explanation might be, it was spooky.
I’m embarrassed that I fell for this charlatan, but that experience highlighted just how lost and desperate I was. I wasn’t thinking very clearly. Despite my intense preoccupation with researching hard science and gathering facts about environmentally induced illnesses, I was too exhausted and debilitated to always be completely rational. Fortunately, I had Ashlee and the Environmental Health Foundation to focus on, or I might not have made it through this darkness.
In December 1995, two months after I returned from Georgia, I threw myself into the next fund-raising effort: a celebrity hockey event we put on at the Tucson Convention Center. It was held on a Saturday evening, featuring actors Alan Thicke, Matthew Perry, and Cuba Gooding Jr., as well as supermodel Kim Alexis, playing against a team of University of Arizona alumni skaters. The event packed the Convention Center, and its success gave me the energy boost I needed to think about my next move.
12 • MY DAUGHTER SAVES MY LIFE
MAYBE ASHLEE WAS RIGHT, I decided: I should consider seeing Dr. Seastrunk in Dallas. Through my network of fellow patients—which was vast by now—I found the name of a woman who was a patient of his. She gave him a rave review and assured me that he was a well-qualified neuropsychiatrist affiliated with a major hospital.
Dr. Seastrunk was also a researcher who devoted much of his career to topics close to my heart. For instance, he’d studied the links between chemical exposures and a person’s susceptibility to electromagnetic frequencies, and he’d investigated ways to control subclinical seizures in Gulf War veterans. His research proved that repeated exposures of animal brains to either chemical or electrical irritants produced changes in both brain activity and behavior; he also discovered that repeated brain stimulation eventually produces intense seizure discharges. He called this repeated brain stimulation a “chronic irritant,” or a “kindling effect.”
Once I read his work, I remembered that Dr. Iris Bell, one of the experts on our scientific advisory board for the Environmental Health Foundation, had applied this same “kindling effect” concept to chemical sensitivity. She had pointed out to me that the olfactory system in humans allows environmental chemicals direct access to the brain via the nasal passages. When solvents, perfumes, aromatic hydrocarbons, or any other chemical molecules pass the “olfactory bulb” (the entry point of the smell system), they continue traveling directly into the brain, progressing neuron by neuron into the brain’s limbic system. This is important because the limbic system serves as the location of our emotions; it’s also the place in our brain where we organize information.
Again, I recalled the smells in my office at 110 Tower and winced as I thought about how those smells must have emanated from toxic chemicals. By breathing them in, I’d given those toxins a direct highway into my brain. Eventually, I’d suffered that “kindling effect.”
I wasn’t expecting Dr. Seastrunk to actually help me. How could he succeed when so many others had failed? But I owed it to Ashlee to try him.
• • •
It was an incredible ordeal to fly the two hours from Tucson to Dallas. I found a friend to drive Ashlee and me to the airport and push my wheelchair to the gate while I held my oxygen tank on my lap.
It was hard work for me to stay calm on the plane, knowing I was being assaulted by chemicals that could prove lethal to me. I hoped that the oxygen tank and mask would afford me enough protection to make it through; once again, I felt like an astronaut visiting an unexplored planet with countless hidden dangers.
Naturally, I was worried that something might happen to me on this trip, and Ashlee would then blame herself. Yet a part of me was exhilarated. At least Ashlee was seeing me as a man who courageously ventured out into a dangerous world. I longed for my daughter to learn the value of taking risks in life. I didn’t want my illness to be a reason for Ashlee to curb her own life adventures.
From the moment I met him at Tri-City Hospital in Dallas, I knew that Dr. Seastrunk was markedly different from other physicians I’d seen. He had a strong Texas accent, and he was built like “Poppin’ Fresh,” the Pillsbury Doughboy.
Despite his stout build, Dr. Seastrunk exuded energy. I felt his intense intellectual curiosity at work as he questioned me and examined my medical records. He also had the warmest, kindest eyes of any doctor I’d ever seen. You could tell by looking into this man’s eyes that he was humble and spiritual, almost angelic. Unlike many of the other physicians I’d seen, he didn’t treat me as a number or a statistic, but as a human being who deserved dignity. Dr. Seastrunk wasn’t practicing medicine as a business. He was a healer.
My body had deteriorated significantly by that time. I was 6 feet 2 inches tall, but my weight had diminished to a near-skeletal 140 pounds. I looked like I was at death’s door. Everything was spinning around me, and I couldn’t concentrate or think. I had to force myself to focus minute by minute, or I’d forget where I was and what I was doing.
Dr. Seastrunk put me through a battery of tests, one of which was magnetic resonance spectroscopy (MRS). This procedure is often used to complement the more traditional magnetic resonance imaging (MRI) and requires a technician to inject dye into your blood as a means of determining the concentration of brain metabolites. Doctors typically use this test to evaluate disorders of the central nervous system and low-grade brain tumors.
I went into a small exam room and changed from my street clothes into a hospital gown. A technician wheeled me on a gurney into a plain white room with a large machine. The MRS machine looked like the MRI machine I was already familiar with; it was shaped like a big white pl
astic doughnut. I was inserted into the machine like a torpedo into a submarine.
I heard the whir and clunk of the machine as it began working and tried to stay still. After a few minutes, I heard Dr. Seastrunk say, “See these lesions on the right side of his brain? I think that’s part of the problem.”
From the reading I’d done on chemical exposures, I already knew that I had lesions on my brain. These were essentially scars on my gray matter. Nothing new there.
Once I was back in the exam room, Dr. Seastrunk told me he had all the information he needed, and said the MRS showed that my liver also had lesions. “Those lesions on your liver might indicate that your liver was injured and can’t detoxify your body properly,” he said, pointing out the white marks on the scan.
“How did I get those?” I asked.
“We’re not sure,” he said. “They could be caused by a virus, but I think in your case it was chemical exposure. The lesions on your liver suggest that you were poisoned, because it’s the liver’s job to detoxify poison. Your liver had to work so hard, the detoxification pathways in your body have become compromised.”
I had been poisoned. I shook my head a little, remembering Dr. Kirkpatrick, the doctor who had theorized that I might have been poisoned by one of the criminals I prosecuted. I had been poisoned all right, but by a building, not a person!
“Have you ever seen anybody like me before?” I asked dully. “And, if so, did you help cure that person?” Of course I expected the answer to be “No.”
Or, worse, maybe Dr. Seastrunk would promise me a cure, like some of the other doctors who said they’d be able to help me, adding, “It’ll get worse before it gets better” as they prescribed this or that “miracle” treatment.