by Alan Bell
I had absolutely no idea who Dr. Andrew Weil was because this was long before it was easy to Google people. I didn’t know he’d gone to Harvard Medical School, or that he had studied biology, concentrating on the ethnobotany of medicinal plants. Andy and I met behind the house, where we talked about his years with the Harvard Botanical Museum and his writings on the relationships between human consciousness, culture, healing, and drug experience, which led him to practice alternative medicine. Of course, I couldn’t imagine at the time that he would later write bestselling books like The Natural Mind: A New Way of Looking at Drugs and the Higher Consciousness. From what I could see, this guy was just what Ashlee said he was: a hippie with ragged jeans, a T-shirt, and a beard.
“I’m sorry, but you can’t come inside,” I told him.
“That’s all right,” he said. “I’ll sit out on the patio with you.”
Andy asked questions about my life before and after I became ill. Though my case was certainly extreme, he acknowledged that the number of people afflicted with multiple chemical sensitivity is on the rise. “Certainly, the number of things in our environment that might be causing this has increased,” he said.
At the end of our interview, he suggested that I allow myself to be tested by his colleague, Dr. Gary Schwartz, who was studying the impact of electromagnetic fields on human health. Then he said, “Listen, Alan, you know I’ve been studying how different cultures around the world treat medical problems using plants and herbs. I’m going to the rain forest. If I find something there that might help your symptoms, would you be open to taking it?”
“Andy,” I said, “if you told me to jump off a cliff, and I felt like there was a reasonable chance I’d get better if I did it, I’d jump off the cliff.”
“Great,” he said. “See you soon.”
At the time, Andy was traveling all over South America and Africa, researching how other cultures treat diseases using alternative medicines and remedies. He showed up at my door without warning about a month later, walked around to the back patio with me, and produced a small satchel tied with string. From this, he removed a vial containing a sparkling, iridescent liquid.
“Open it,” he said. “I want you to smell it.”
“Oh, I don’t know, Andy. What is this stuff?”
“It’s an herb from the rain forest in Brazil,” he said. “Go on. Take a little whiff.”
I did, and it smelled good. Very aromatic, although it didn’t set me off the way perfumes did. Andy told me what it was—it had a long, weird name derived from a rare plant in the rain forest—and told me to open the bottle again and inhale the smell.
“Use it the way an asthmatic would use an inhaler,” he suggested.
I didn’t even bother asking what the herb was; by then, I was so disillusioned that I didn’t really believe it would work anyway. Still, I followed his instructions, then sat back for a second. Nothing happened.
He was watching me closely. “Alan, I want you to do this several times a day, and then I’ll be back to check on you, all right?”
“All right,” I said, because I could already tell this stuff, whatever it was, wouldn’t kill me.
The herbal potion didn’t help me, either. But I appreciated Andy’s effort.
• • •
Not long after that, Andy’s colleague, Dr. Schwartz, visited me. Three vans pulled up to my bubble, stirring up a large cloud of desert dust. I waited for the dust to settle, then allowed Schwartz and his team to come inside after showering and changing their clothes.
Dr. Schwartz was another Harvard-trained physician at the University of Arizona. Like many scientists, he had never come across anyone with a condition as extreme as mine and viewed my condition with excitement. I felt like one of his lab rats, but I didn’t particularly mind; I had little to lose, and if having scientists study the impact chemicals had on my body could contribute to the good of mankind, at least my illness would serve a greater purpose and give my life a deeper meaning.
Dr. Schwartz was researching how electromagnetic fields generated by televisions, cell phones, and other electronic devices adversely affect the human brain. He’d heard about my extreme sensitivity from Andy and wanted to test whether my brain waves would show any adverse response, including seizures, to EMFs.
“My team and I have tested ten people, but we haven’t had any positive results yet,” he said.
I agreed to be his guinea pig. If nothing else, this would provide another distraction, and my days were long without those.
The testing didn’t begin well. Dr. Schwartz and his team had me take a seat, placed a blindfold over my eyes, attached electrodes to my head, and asked me to wear a headset to prevent me from hearing when the TV was turned on and off. I waited without knowing what was going on, feeling a little edgy as the moments passed.
After a few minutes, I felt the earphones being removed, then the blindfold. I looked around at their glum faces and said, “What happened?”
“Nothing,” Schwartz said with a disappointed shrug. “There was no change in your EEG pattern when we turned the TV on and off.”
Suddenly I realized something. “Wait, my television is shielded!” I pointed to the TV. “Didn’t you see the special Plexiglas sheet covering the stove opening?”
Amazingly, they hadn’t. Schwartz quickly turned to one of his research assistants and said, “Do we still have that extra TV in the van?”
“Yeah.”
“Go get it.”
They brought the TV inside and reattached the electrodes and blindfold. Then they slipped the headphones over my ears.
I waited for a few moments. I couldn’t hear anything, but my body began to twitch involuntarily, and I knew it was corresponding to the television being switched on and off. Sure enough, when the earphones and blindfold were removed, the faces of the research team were all beaming. They looked like scientists who’d just successfully blasted a rocket into deep space. I had to smile, too.
“Oh, my God,” Schwartz said. “This is incredible! Do you know how amazing this is? Every time we turned on the TV, we could actually see your brain reacting. You instantly started twitching. Your response was clear.”
More importantly, he added, their machines had recorded small but measurable seizures in my brain that otherwise would have gone unnoticed. “This is a major breakthrough!”
According to Schwartz, I was the first human being he had tested who demonstrated a clinical response to an electromagnetic field, as measured by scientific equipment. While I was glad to have made these scientists happy, I didn’t think my underlying health problems were being caused by electromagnetic radiation. I had no electronic devices anywhere near me during my stints in Elgin, Seagoville, and Cabo San Lucas, yet I was still sick.
Now, however, it was clear to me that my initial exposure to toxins in the 110 Tower must have injured my brain and central nervous system in a way that made me reactive to electromagnetic fields. This was one more clue I could use.
Schwartz was still speaking, growing more excited by the minute. “After this, nobody can ever scoff at the potential harm of EMFs again. It’s at least a place to start addressing your condition.”
I looked up at him and smiled, because the look on his face was one I hadn’t seen in a long time: hope. It was the same look I’d seen years ago on the faces of my fellow prosecutors, whenever a case they thought had gone cold suddenly turned up a new lead. Although I eventually lost touch with Dr. Schwartz, other scientists and clinicians used his findings to further their own research.
Bit by bit, I was collecting information that linked disease to environmental factors.
11 • A FOUNDATION IS BORN
BY THE TIME I SAID good-bye to my marriage and my sister, I felt as though I’d been on an odyssey littered with countless obstacles. But there was a bright side: struggling to solve my own medical mystery enabled me to piece together a global view of environmental health.
Despite being trap
ped inside the bubble, I knew that I wasn’t alone. Based on reading news articles and scientific journals, and on my conversations with top clinicians and other victims of toxic exposures worldwide, I knew with certainty that millions of people were being harmed every day by environmental poisons found in their homes, schools, workplaces, and neighborhoods. I was terrified.
My conversations with scientists taught me that all disease stems from interactions between our genes and environmental exposures. You could take a hundred people, pump them full of toxic chemicals, follow them for twenty years, and discover that each of them will acquire a different disease (or none at all), depending on each person’s genetic predisposition. One easy example: a husband smokes three packs a day and never becomes ill, but his wife develops lung cancer from breathing in his secondhand smoke.
So far, few scientific studies have addressed this genetic-environmental axis. Pharmaceutical companies don’t fund these studies because they haven’t figured out how to make money by producing drugs to treat environmentally induced illnesses. Charities are raising money for scientific research aimed at studying various diseases, but they rarely address how such illnesses are linked to common environmental factors.
I was overwhelmed by this huge void. The only possible way to fill it was to start my own charity.
Soon after Judi’s death, I placed a call to my brother, Bobby, and explained everything I’d learned. One thing I’d always respected about Bobby was his ability to turn an idea into a successful business—he had built the Banana Boat company into a corporate giant, with retail sales topping $95 million dollars in 1992.
“I want to start a charity to fight environmental illness through research and education,” I told him. “We can fund scientific research to help treat and cure disease. We can also educate people about ways to modify their own environments to prevent illness and death. Nobody’s doing anything about this, Bobby! Wouldn’t it be great if we could take my misfortune and turn it into a benefit for others? What do you think? Would you be open to funding something like this?”
Bobby, bless him, said, “I’m in. Tell me what you need.”
I set things in motion quickly from there. After so many painful losses, it felt good to have a new purpose that extended beyond my tiny, glass-enclosed life.
• • •
By March 1995, Bobby and I had opened an office in Tucson for our new Environmental Health Foundation. In addition to funding the charity, Bobby brought in his top publicist from Banana Boat to get the media ball rolling. Meanwhile, I worked on everything else.
My long-term goal was to help prevent environmentally linked disease on a global level. I couldn’t leave my bubble, but it’s amazing what you can do with limited tools if you’re driven by passion. I had only my phone, pads of paper, pens, and a fax machine to set up the foundation. That’s it. Yet, I felt unstoppable.
I had kept up my law license by taking continuing education courses via videos and DVDs once I had my Plexiglas-shielded television set. That meant I could draw up and file complicated legal papers for the IRS, allowing Bobby and me to cofound the Environmental Health Foundation as a 501(c)(3) not-for-profit organization “dedicated to protecting mankind from environmental toxins.”
In these registration papers, I made it clear that the Environmental Health Foundation wasn’t like other organizations focused on cleaning up and protecting our planet. Instead, our group intended to save lives by empowering people with knowledge to modify their lifestyles in ways that would prevent environmentally linked disease. Our other major goal was to find treatments for people whose lives have become adversely affected by environmental toxin exposure. Or to put it more simply: our goal was to help “Save the Humans.”
My immediate plan was to create a scientific summit that would emulate the Manhattan Project, which gathered great scientists in Los Alamos, New Mexico, and instructed them to produce a bomb that would end World War II and save American lives. I didn’t want to destroy people, of course. I wanted to help heal them. But my strategy was the same: I intended to gather the greatest scientists and clinical researchers under one roof for a four-day Environmental Health Summit so they could collectively create a national blueprint to prevent and treat “the silent epidemic of the twenty-first century.”
Basically, I wanted these experts to answer two fundamental questions: First, what are the biggest environmental risks humans face? And, second, how can we get the biggest bang for our buck in helping prevent, treat, and cure diseases caused by environmental poisoning?
Finding a venue for the first Environmental Health Summit of its kind in the United States was surprisingly easy: I realized immediately that we had the best place to do it right in Tucson, in the Biosphere 2. This is the world’s most unique facility dedicated to researching our planet’s environmental interaction with human health.
Located on forty acres, the Biosphere complex consisted of futuristic glass buildings housing the largest closed environmental system on Earth. The system included a rain forest, an ocean with a coral reef, mangrove wetlands, a fog desert, an agricultural system, a human habitat, and a subground infrastructure. One of the buildings resembled a giant glass pyramid, and several white geodesic domes nearby looked like they belonged on an enormous floating spaceship.
Biosphere 2 not only provided research laboratories, but also promoted interdisciplinary thinking and education about planet Earth and our future. The idea behind developing this fantastic complex was to learn how man might truly live in a self-contained environment in outer space.
Sure enough, the minute I explained the Environmental Health Foundation’s summit plan to the Biosphere’s management team, we had our location. Now all I needed was to find a way to convince scientists to participate.
One by one, I phoned every environmental health scientist and clinician I’d contacted in the past, as well as many I hadn’t, and invited them to the summit. I started with the top university and government scientists, figuring that once I had a few big names, the rest would want to take part.
This proved to be true. Within a short time, I had assembled a founding Scientific Advisory Board consisting of our nation’s top environmental health scientists and clinicians. The experts I assembled included over a dozen of the world’s most important and influential scientists, clinicians, and leaders in environmental health.
Dr. Philip Landrigan, a Harvard Medical School graduate and chair of the Department of Preventive Medicine at Mount Sinai Hospital in New York, was one of the first scientists to join forces with us. His name was so well respected that others quickly agreed to participate, too. He agreed to serve as chairman of the Environmental Health Summit. Dr. Landrigan had a long-standing interest in the effects of chemicals on human health and was deeply moved by my story.
Trained as a pediatrician, he had a strong interest in neurology. He believed that many chemicals widely used today are wreaking havoc on all of us, particularly on young children whose brains, immune systems, reproductive systems, and lungs are growing rapidly.
“We have abundant evidence that toxic chemicals cause diseases in children,” he said. “We know that air pollution causes asthma and other respiratory diseases. We know that these chemicals cause loss in IQ, shortened attention spans, and behavioral problems, all of which plays out in school and in the workplace as they get older.”
Dr. Landrigan is also concerned that chemicals are “innocent until proven guilty.” It’s true: we’re constantly introducing new chemicals into our environment, extolling their virtues until finding out later—too late, in my case—about the harm they might cause.
Dr. Landrigan applauded me for setting out on this crusade to educate the American public about chemical hazards. We agreed that US laws are inadequate and fail to regulate chemical usage in ways to protect human health. “We’re conducting a massive toxicological assault on the American population,” he said. “Our children and grandchildren are the experimental animals.”
• • •
With the Environmental Health Summit scheduled for June 1995, the media momentum escalated rapidly both among local publications, like Phoenix Magazine, and national outlets, like the Los Angeles Times. I also appeared on CBS, NBC, and PBS talk shows, though I always had to be interviewed on camera just outside of the bubble, because I was too ill to tolerate being inside radio or television stations.
Before long, our first-of-a-kind spectacle drew cosponsors, including the National Institute of Environmental Health Services, the Agency for Toxic Substances and Disease Registry, the Centers for Disease Control and Prevention, and the University of Arizona Health Sciences Center. Vice President Al Gore provided a written endorsement of the summit, praising our long-term agenda and public-private approach to fund-raising and policy making.
Our foundation rapidly gained traction partly because environmental poisoning seemed to be making daily news headlines. For instance, the issue of the Tucson Lifestyle magazine that covered my story in 1994 also reported the Tucson City Hall’s closure due to suspected asbestos contamination. In another disaster, a railway tank car valve failed in Richmond, California, sending hundreds of residents to hospital emergency rooms, where they were treated for sulfuric acid inhalation.
A New York Times story reported that tiny particles of soot, though falling within current legal limits, posed unexpected health risks. A study conducted by the Environmental Protection Agency and Harvard’s School of Public Health suggested that up to sixty thousand deaths a year were caused by particle pollution—a far larger number than any other form of pollution, and one that rivaled the death toll from some cancers. This was like having a Vietnam War every single year. Where were the protests about that, I wondered?