by Alan Bell
I began gradually testing my abilities here and there. For instance, if I smelled fabric softener in someone’s home, I’d follow the scent until I found the stuff in a cupboard. Once, I walked into a friend’s house and immediately said, “Hey, you got a new mattress!” The shock on his face confirmed that I was correct.
“How could you possibly know that?” he asked. Usually, it took some convincing before people believed me.
Over time, I began to appreciate this gift. Previously, I’d gotten sick when exposed to something without knowing what triggered my body to react. Whenever that happened, because I was too sensitive, I felt hit from all directions, not knowing where the assaults originated. Now that my sensitivity was dialed down, I was able to distinguish the origins of specific harmful exposures. I was better equipped and more experienced. With luck, maybe someday I could use this gift to help others protect themselves.
• • •
Even in the spring of 1996, nearly a year after the Neurontin kicked in, I still had to pinch myself occasionally to make myself believe my new life was real. Because half of me expected my improved health to be yanked away, I was determined to make the most of every moment.
For instance, that spring I drove with Ashlee from Arizona to the Grand Canyon, torturing her all the way there by playing Eagles songs until she’d lie in the back seat with her hands over her ears. I still didn’t trust my condition to remain stable in a hotel room, where I’d be subjected to many chemicals, so we pitched our tent and camped out.
Ashlee was miserable. She had no trouble telling me she hated every minute of that trip—even when we were tucked into our cozy sleeping bags, or during our exciting helicopter ride over the Grand Canyon, where the majesty of the views took my breath away.
“Look at this? Don’t you love the view?” I chided her, shouting over the noise of the helicopter’s blades. “It’s better than the chairlift to the top of Mount Lemmon, right?”
“Nope,” Ashlee said, crossing her arms stubbornly. “I hate this. And I hate camping!”
Ashlee had always been opinionated, smart, and strong willed. When she was younger, I could manage her defiant behavior with a little creative discipline and coaxing. Moreover, her concerns about my health would prevail over her need to defy me. However, as I became healthier, she took opportunities to argue with me, knowing I could physically withstand her adolescent challenges. Our relationship was changing. I no longer looked like I was on death’s door, and Ashlee was getting older. She began to rebel against me the way many preteens and teenagers do when their parents try to force them to do something they don’t necessarily want to do. Surprisingly, this was comforting to me. Ashlee’s life was becoming normal despite everything we’d been through together.
• • •
It was important for me to continue building awareness about our environment’s impact on our health. In 1997, a group of people in Tucson asked me to be one of their keynote speakers at their Natural Choices Expo. I enthusiastically agreed, despite knowing that it would take a toll on me physically.
The Natural Choices Expo ’97 was billed as the first convention on alternative medicine in the United States. It signaled our country’s growing interest in alternative health and eco-friendly living.
“Who else will be speaking?” I asked the person who called to invite me.
“Dr. Andrew Weil,” she replied. “Perhaps you’ve heard of him?”
She told me that Andy had recently published another book on natural health and explained that Andy’s Integrative Medicine Program at the University of Arizona was opening a month before the expo. In addition to Andy and me, another keynote speaker was actor Dennis Weaver, who had built his own house out of recycled tires while campaigning in the anti-hunger movement.
What could I do but laugh and say, “Are you kidding? Of course I’ve heard of Dr. Weil. We’ve actually met. But, look, do me a favor. Please don’t tell him I’m coming, okay?”
The woman agreed.
On the day of the speech, I walked up to the head table at the event and grinned when I spotted Andy. He was talking to someone and didn’t see me right away. Andy looked exactly the same: bearded, slightly disheveled, very casually dressed.
Finally, he glanced up and saw me. Andy’s face paled and his eyes widened. He looked like he’d seen a ghost. All I could do was look at him with a big smile and say, “Hello, Andy. We meet again.”
“Alan? What are you doing here? How did you get out?”
“I’m taking Neurontin,” I said.
“You’re kidding me,” he said, shaking his head in disbelief. “Seriously. How did you get out?”
I repeated my answer. “How are you?” I asked him then. “It’s good to see you.”
“It’s good to see you, too!” Andy said. “But I can’t believe this. I can’t believe what I’m seeing, that you’re out of the bubble. And you’re the keynote speaker sitting next to me! I thought for sure it had to be a different Alan Bell on the program.”
I was introduced to the audience to speak before Andy. It was my first public appearance outside the bubble. I was nervous, but I had thought carefully about what I wanted to say. I put all of my heart and passion into telling the crowd that we had a duty to spread the word that what we breathe, eat, and drink can sustain and promote our health—or literally destroy it, even killing us.
In some ways, because this was a Tucson crowd that was already committed to living a more organic, natural lifestyle, I was preaching mostly to the converted. But I didn’t care. If I could reach even one more person and convince him or her of the importance of avoiding harmful substances being poured into our environment, I was determined to do it.
I talked about the millions of Americans becoming ill each year because of air pollution, and how outdoor air pollution causes one out of every twenty city deaths. I spoke about the rising incidence of cancer, and how the National Institutes of Health had recently reported that 70 percent of all cancers can be linked to environmental pollutants.
“Many scientists predict that, unless we act now, environmental illness will be the epidemic of the twenty-first century,” I went on. Then I reminded the crowd that, once upon a time, we had a polio epidemic that crippled and killed many children.
“Back then, researchers and doctors told us that very little could be done about that polio epidemic, but a small group of parents believed otherwise,” I told the audience. “They believed that, if they could help spread the word, something could be done. So this small group of parents, with cups in their hands, began knocking door-to-door, collecting one dime at a time. And because they spread the word, they found the answer: the Salk vaccine.”
My message emphasized that we can make a difference in the fate of humanity—but only if all of us work together. At the same time, I urged my listeners to convince legislators to enact laws that better regulate all chemicals, not just those in foods or medicines.
The cost of inaction is too high, I reminded them. “I’ve seen firsthand what a poisonous environment can do to a human life. I’ve seen the illness, the suffering, and the death. I’m here to tell you that everybody is at risk. Nobody is immune. This silent epidemic knows no borders. Its victims are rich and poor, black and white, Christian and Jewish, young and old. We’re all in the same boat … and this boat is sinking.”
After the applause died down, Andy stood up and spoke easily, without notes. He began by talking about how he and I had first met, and how he still couldn’t believe that I’d managed to walk out of that bubble.
“I saw this guy when he was on death’s door,” Andy said, “and I’ve got to tell you, Alan Bell knows firsthand what it’s like to be poisoned by environmental toxins. I’m absolutely amazed and blown away to see him standing here with us today. You have no idea how happy I am.”
Andy went on with the rest of his speech. When he was finished, people in the audience rose to their feet and applauded loudly, probably thinking Andy and
I had planned to speak together in this way. We had delivered our message, loud and clear. They’d heard us and believed our message.
Now I just had to figure out how to reach an even bigger audience. But how?
• • •
Although Dr. Johnson in Dallas was still my primary physician, Dr. Seastrunk wanted to examine me again. He had opened up a satellite office in Southern California—a quicker flight from Tucson than his main office in Dallas—so I decided that was doable.
Dr. Seastrunk’s office was located in Dana Point, a city of just over thirty thousand people in Orange County, California. It’s one of the few places in Orange County with a harbor, and it’s a popular place for surfing.
I fell in love with the area immediately. The harbor was stunning, and my overall impression of Dana Point was that of a little seaside Italian village. Seeing it made me remember how I’d always escaped to the beach in Miami whenever I was feeling ill. Maybe the combination of being near the ocean and taking Neurontin would cure me for good. I decided to rent a place in Dana Point and see if it suited me.
It did. The Pacific air here felt good to me—so good, in fact, that I felt my recovery take another giant step forward soon after making the move. I also kept my bubble in Tucson because Ashlee was shuttling between that house and her mother’s, spending two weeks of each month with me and the other two with her mother. I lived in Southern California during my off weeks.
As it turned out, that plan didn’t last long. Susan soon married again, and, in a shocking move, without any explanation or warning, suddenly surrendered custody and all parental rights. I became Ashlee’s sole guardian.
How do you tell your little girl her mommy doesn’t want her anymore? Susan has not spoken to or seen Ashlee since.
Life goes on, and we do the best we can with the cards we are dealt. I brought Ashlee to Capistrano Beach in California and bought a house. This was a painful transition for her, but I did my best, continuing to make up for the time we’d lost by redoubling my efforts to bond with her through activities we both enjoyed.
I was starting over yet again. This time it felt good.
• • •
That year, Ashlee turned eleven and I made good on the fantasy I’d crafted with Dan Baker in my Arizona bubble: I took my daughter to Disneyland.
I was nervous about the idea of spending an entire day at an amusement park, so I took some precautions. I asked my parents to accompany us and brought my oxygen tank and an electric scooter. I also ordered a special meal to meet my strict dietary needs.
We started with Space Mountain, the giant indoor roller coaster designed to simulate a rocket ship blasting through the universe. During my years of confinement, even the thought of venturing outside my bubble was akin to a space journey because I required so much protective gear. I couldn’t believe I was flying through the stars with my daughter, both of us breathless with laughter and excitement.
Next, Ashlee and I tackled Futurama, where kids drive their own cars around a track while their parents sit in the passenger seat—Ashlee was in heaven, as always, sitting behind the steering wheel—and then the Matterhorn, where we zipped through a snowy mountain landscape before coming face-to-face with the Abominable Snowman.
Ironically, the gentlest ride of them all—It’s a Small World—was nearly my undoing. As the scent of the chlorinated water hit my nose, I experienced an immediate sensory overload. I backed out of the line of people waiting to board the ride, saying, “It’s the chlorine, honey. I’m sorry. It’s too much. I can’t do it.” My sixth sense had kicked in once again to save me from harm.
I could see the alarm on the faces of Ashlee and my parents, and felt their worries, even though they didn’t dare share them with me: Is Alan going to have a seizure? Is this all going to end badly? Have we pushed things too fast?
Then Ashlee spoke up. “Dad, are you okay if I go on the ride by myself?”
I stared at her in wonder, impressed by the fact that she was now comfortable enough with the state of my health to leave me on my own—something she wouldn’t have done even a year or two ago.
“Sure,” I replied, though I suggested my parents accompany her.
My father shook his head. “I’d rather do Space Mountain again than this ride.”
“Me too,” my mother said. “What about you, Ashlee?”
They didn’t have to ask her twice. The three of them went to take another turn on Space Mountain, while I rested on a bench far from the scent of chlorine. When they returned, still flushed with excitement, I grinned up at them. “Ready to keep going?”
“Are you sure you’re okay, Alan?” my father asked, his face creased with concern.
“I’m fine, Dad. I just need to stay away from chlorine.”
And so we did. We made the most of that magical day, and I never once had to use the oxygen tank. As for my electric scooter, I never got a chance to use it. A certain red-haired little girl was having too much fun driving it; Ashlee used the scooter to travel from one food stand to the next, loading its basket with every kind of fast food the park offered.
Late in the afternoon, I looked around at my little family: my father, the World War II veteran who’d stayed by my side through the horrors of Mexico and Seagoville; my mother, who gave me such an idyllic childhood and the values I still live by; and Ashlee, who’d been responsible for pushing me until I finally found freedom outside a bubble.
It was all too much for me. I started sobbing uncontrollably and finally had to sit on the electric wheelchair. Immediately, my family gathered around, drawing close like a human fortress, as if they could surround and protect me.
“What is it?” my father asked. “What’s wrong? Are you sick, son?”
I shook my head, struggling to put into words everything I was feeling. “No, no. I’m fine. But I thought this day would never come. I love you all so much, and I’m just so glad to be alive.”
We stayed at the park until the fireworks show, cheering as the rockets exploded over Sleeping Beauty’s castle, marveling at the colors sparkling bright in the sky.
• • •
I also took Ashlee to Six Flags and Knott’s Berry Farm, where I introduced her to the daredevil thrill of riding roller coasters. I knew my speed demon would love them, and she did. We also enjoyed the thrill of jet skiing in Dana Point Harbor, where we’d crash into the waves and fall off the jet skis into the cold Pacific Ocean, only to climb back on and do it again.
I introduced Ashlee to the music I loved and took her to concerts with the Beach Boys, Paul McCartney, Kenny Loggins, The Monkees, Chicago, and more. And because I wanted to share Ashlee’s music, I bought her tickets to see the Backstreet Boys and other groups she loved. On another memorable night, we sat in the audience for a taping of The Tonight Show with Jay Leno.
One of our favorite activities was to take the aerial tramway to the top of Mount San Jacinto in Palm Springs. The saucer-shaped, rotating tram starts in the dry desert at about 2,700 feet and ascends through several different climate zones to the summit, an alpine forest at just over 8,500 feet.
I loved this outing partly because it reminded me of our trips to the top of Mount Lemmon when Ashlee was much younger—only now there was a big difference because I felt as good at the lower elevations as I did at the higher ones.
When we visited my parents in Miami, Ashlee and I often rented a boat in the Florida Keys and went snorkeling on their amazing reefs. The reefs had essentially been my backyard while I was growing up. Now I introduced Ashlee to ocean life and taught her about the different fish. This was a chance for me to recapture one of the many experiences I didn’t expect to ever have again. I had every reason now to believe that we’d share many more special experiences together soon, and I was humbled by my good fortune.
14 • FROM SURVIVOR TO ADVOCATE
IN 1999, I WAS FLYING home from Florida to California with Ashlee when, while standing at the baggage claim in Los Angeles, I overheard a co
nversation between two men standing nearby. They were discussing a “toxic tort” case—that’s a legal case involving a plaintiff claiming injury after exposure to environmental toxins.
Naturally, my ears perked up. I introduced myself to the men and told them I was an attorney who had founded the Environmental Health Foundation. We began discussing their case, and the men introduced themselves as Attorney Ed Masry and his office manager, Jim Hira, of the law firm Masry and Vititoe.
I’d heard of the firm, of course. In environmental health circles, Ed Masry was famous. He and his law clerk, Erin Brockovich, successfully built a legal case against the Pacific Gas and Electric Company in 1993. The case proved how the gas company’s Hinkley compressor station, which served as part of the natural-gas pipeline connecting to the San Francisco Bay area, used the toxic chemical hexavalent chromium to fight corrosion in their cooling tower. This chemical was discharged to unlined ponds at the site through wastewater, and some of it percolated into the groundwater, contaminating it. The lawsuit alleged the chemical was responsible for many people being diagnosed with cancer in the area.
The case was eventually settled in 1996 for $333 million, the largest settlement ever paid in a direct-action lawsuit in US history. The case became the subject of a major motion picture, Erin Brockovich. Ed Masry, who was portrayed in the film by Albert Finney; Erin Brockovich, who was played by Julia Roberts; and their law firm rocketed into the spotlight after the movie was released. They were flooded with worldwide requests for representation from victims of environmental poisoning.