Poisoned
Page 11
“Yeah, they’re still pretty good.”
“Okay,” he said briskly. “Here’s what I want you to do: I want you to start playing music again. Buy an electric keyboard and use it to play music from records you like, starting with the music you played in bands while you were growing up. Music can change your body chemistry, make you feel happier, and help you heal.”
Although I was uncertain, I did as he said. I ordered an electric keyboard and started fumbling my way through music I remembered from the 1960s and ’70s. Astonishingly, the music made me feel better than I had in a long time. I had forgotten the power music has to alter your psyche.
Playing music again helped anchor me to the life I once had, to happy times when I wasn’t trapped alone in this body. I hungrily listened to one album after another, often long into the night, transposing the songs I heard so that I could recreate them on my keyboard. Two of my favorites were songs about the environment, “The Last Resort” by the Eagles and “Conviction of the Heart” by Kenny Loggins.
Occasionally, I’d have a sort of out-of-body experience while playing alone, especially late at night: I’d see this emaciated guy in this tiny house in the middle of the desert, illuminated by a dim light and surrounded by coyotes howling in the distance.
I’d imagine my music flowing out the windows, a stream of notes joining the desert’s animal sounds beneath the bright, starlit sky. I felt less alone then, and believed, as Loggins sang in his lyrics, that I could be “at one with the earth and sky.”
9 • FINDING MY PURPOSE ON A MOUNTAINTOP
IN LATE SPRING OF 1993, I took Ashlee on a day trip to the peak of Mount Lemmon, the southernmost ski area in the United States. I had been seeing a naturopathic physician, Lance Morris, whose homeopathic injections of vitamins and minerals were helpful in cooling off my immune system and preventing a “landslide” or “free fall,” as he described my acute reactions to many chemicals. He could not offer me a cure, but I am convinced he helped me survive. With Lance’s gentle and gradual help in stabilizing my health, I could now make rare trips outdoors.
Mount Lemmon was a place I could tolerate because it was a snow-covered mountain high above the Arizona desert. The air was absolutely pristine.
We placed my oxygen tank on the front passenger seat of my retrofit Camry and Ashlee climbed into the back seat for the thirty-mile drive north to the Coronado National Forest. This trip into the Santa Catalina Mountains was one we both loved. For me, it was a thrill simply to be driving.
I loved the diverse microclimates along the Catalina Highway. We ascended from the desert floor through dense forests of saguaro cacti and paloverde bushes. That terrain then faded into open grasslands at about four thousand feet above sea level.
Above that altitude, we began seeing beautiful ponderosa, Arizona pines, and groves of aspen. Once we drove high enough to rise above the pollution, I could remove my oxygen mask, open the windows, and talk normally with Ashlee. It felt as if I were finally free of my body’s prison.
Ashlee loved this trip, too. We usually stopped at a little park museum displaying natural history exhibits, including stuffed bears and mountain lions. There was also a Cookie Cabin where she got chocolate chip cookies as big as her red-haired head. We did both of those things on this particular day; because it was a weekday, Mount Lemmon was nearly deserted.
Since most of our travels together had to be imaginary given my physical limitations, this excursion felt almost exotic, as if we were passing through many different countries due to the rapid changes in terrain and climate as we climbed to higher elevations. The higher we climbed, the lower the temperature dropped. The desert floor could be forty degrees warmer than the mountain summit.
Whenever the desert grew too hot, ladybugs migrated upward to cluster in layers on the trees of Mount Lemmon. The trees almost looked frosted red with ladybugs. Ashlee absolutely loved those ladybugs! She especially identified with them because they were red like her hair, and she’d giggle as she let them crawl all over her. At home, she often drew pictures of ladybugs, which I hung on the walls of our home.
This particular day, we built a snowman at the base of the chairlift. Then Ashlee and I threw ourselves onto the ground to make snow angels. The sky overhead was clear, crisp, and blue. I felt a rare moment of absolute joy as my daughter’s laughter rang out over the hills.
Eventually, we finished playing in the snow and climbed onto the chairlift. Riding to the top of this nine thousand–foot summit was another favorite ritual.
I sat back and marveled, as I always did, at the pristine snow-covered mountains around us, the pine forests, the receding grass-covered hills, and the distant colors of the Arizona desert far below. Ashlee seemed equally transfixed by the natural splendor as we moved upward like silent ghosts, drinking in the panoramic views. We heard the wind whispering through the pines and occasional birdcalls. Otherwise, it was serene and silent.
Suddenly, Ashlee said, “Daddy, where is God?”
I was startled by her question. She was five years old and had never asked me anything like this before. Culturally, I am Jewish, but I’ve never been particularly devout. I don’t believe that God should be defined by any specific organized religion. Rather, I look upon God as the same intelligent creator all major religions describe in different ways.
Yet something about being on that mountain with Ashlee led me to answer in a way that surprised even me. “I suppose He’s everywhere, Ashlee,” I said, realizing as I spoke that this was exactly what I believed: our Creator is everywhere and in everything.
“Is God in that rock?” she asked, pointing to an outcropping covered in lichen.
I laughed. “Yes, I think He is.”
“Is He in that tree?” Ashlee pointed to a tree below us.
“Sure.”
“Is He in you and me?”
“Yeah, honey, I believe He is.”
At that instant, this little girl brought me to terms with my innermost beliefs, and perhaps my destiny. Her dialogue propelled me out of my body and into this altered dimension transcending the here-and-now. An odd sensation washed over my entire body as I felt a presence I couldn’t see. The hairs on the back of my neck rose.
I didn’t hear a voice, exactly, or see an image, but I sensed a command coming from both inside and outside of my body, as if the message were being infused into my every cell. It was a gentle but urgent plea: You must do something to make a difference.
I fell into a trance state, arguing silently with this internal voice: Make a difference about what? How? What resources do I have?
You need to make a difference. Make other people aware of what’s happening to them.
By now, I was completely unaware that I was riding a chairlift up a mountain with my daughter. It was as though I went into another dimension, the way some people describe their souls leaving their bodies during near-death experiences, where they can see their bodies below them.
Ashlee must have seen a weird expression on my face because she started grabbing at my arm, saying, “Daddy? Daddy, Daddy, Daddy! Wake up! What are you doing?”
I couldn’t snap out of my trance. My internal dialogue continued. What do you mean? I asked the voice. Do what? What can I do?
Just do it, it answered. You need to make a difference. Start a movement. Make people aware of what’s happening to them.
Ashlee kept pleading with me and shaking my arm. I don’t know how long I was out of it, but suddenly I returned to my body and looked at her. I could tell she was scared.
I was scared, too. It took me a few minutes to reconnect with my surroundings.
“Daddy, what’s wrong?” Ashlee asked again. “Pay attention to me! I’m talking to you. What’s wrong? What happened?”
Finally, I looked at her and said, “I don’t know.”
“What do you mean?” She cocked her head to one side and studied me closely.
I forced myself to smile. “Never mind, Ashlee. I’m fine. Reall
y I am. Tell me what you were saying.”
Thankfully, she was young enough to accept this. She started chattering again as we rode the rest of the way up the mountain, and we had our usual fun.
On the way home, however, as I was driving down that winding mountain road through all of those different elevations, I started thinking about the message again. I didn’t understand what had happened, but I felt almost as if this message had been implanted in me. I continued thinking about it for days. The days turned into weeks. I kept mulling things over but always hit the same brick wall: what could I do to help other people when I was a sick guy trapped in a bubble and couldn’t even help myself?
Yet I also realized the conversation with Ashlee had led me to connect to everything around me—the trees, the rocks, the birds, my daughter, the sky, you name it—in a way I never had before. I was an integral part of our planet at that moment, and I felt a deep sense of gratitude for that connection.
Perhaps this connection led me to a spiritual awakening of sorts, or maybe I’d just zoned out and reached a deeper part of my psyche. I really had no explanation. I only knew that the message kept gnawing at me.
Finally, acting out of instinct, I picked up the phone, dialed the University of Arizona’s main number, and asked for the College of Medicine. When a secretary answered, I took the phone away from my ear and stared at it. I had no idea why I was calling or what I wanted to say.
“Hello? Hello?” called a voice from the receiver. “Are you still there?”
I put the phone back to my ear. “Um, yeah, okay, I’m here.”
“May I help you?” the woman said.
“Um, yeah,” I said. “Can you connect me to the Department of Environmental Health? Do you even have one of those?”
“Yes, we do,” she said. “I’ll connect you.”
I was dumbfounded. There was actually a Department of Environmental Health? I’d just taken a wild guess and made it up. I couldn’t go near a computer because using them made me sick, so I’d never been able to do any research online. I was a dinosaur stuck in a time warp.
When the next voice picked up the line and said, “Department of Environmental Health,” again, I stumbled my way through the call, asking to speak to the chairman.
From that day onward, I began using my telephone, my only connection to the world, to work toward the purpose I was given. I felt my way through conversations with scientists and clinicians throughout the United States, asking each one how chemicals in our environment adversely impact human health.
And so my real education began.
• • •
By the time Ashlee was five years old, she was spending her days in kindergarten at the synagogue. Susan was still in school and chipping away at the classes she needed to earn a college degree. With Ashlee and Susan gone much of every day, I spent many hours in painful isolation. Now I began spending those long, solitary hours cold-calling university medical schools, targeting specialists in different areas of environmental health. I made these phone calls from my war room, calling experts to talk not only about my own health, but also about global issues related to environmentally induced injuries and illnesses.
At first, I often didn’t understand what they were talking about, especially when the researchers discussed various studies in immunology, endocrinology, and other areas of human health affected by environmental exposures. Bit by bit, piece by piece, I stumbled and fell, got up and fell again through this maze of information. But I kept asking questions and learning the lingo, until eventually I felt comfortable during these conversations. I still didn’t know what I was going to do with all of this information. I only knew that I was driven to learn.
Why did doctors and scientists talk to me? Many were happy to do it out of pure generosity. Others were harder to reach, but I devised a strategy for getting through to just about anyone. When their secretaries answered the phone, I’d say, “This is Dr. Alan Bell. May I speak to …” Then I’d say I was calling to consult about a patient of mine.
Technically, this wasn’t a lie, since my law degree is a juris doctor, or “doctor of law.” My patient was me. As a strategy, it was practically foolproof. I even became adept at feigning impatience if I met resistance, saying, “Don’t you think I have a room full of patients waiting for me, too? I’m taking valuable time to call, so please connect me.”
Determinedly, I continued contacting any expert on the planet who had something to say about how toxic chemicals adversely affect human health. And at the end of each of these conversations, I asked the clinicians and researchers for names of other experts who might be willing to discuss this with me and followed those leads as well. Eventually, I developed a network of America’s top scientists.
I realized that I couldn’t wait for research to filter down through laboratories and governmental approvals to help me. I was in a race against time for my own survival, as well as for the survival of the human race.
During one of these thousands of conversations, I experienced another “aha!” moment. I was talking with a university scientist who said, “You know, your illness is really no different from cancer or heart disease.”
“What do you mean by that?” I asked.
“Well, it’s all connected to the environment,” he said. “Other than accidents, war, or crime, all illness and premature human deaths are caused by only two factors: the genes we’re born with and the harmful chemicals we’re exposed to in our environment.”
Cancer, heart disease, Parkinson’s, Alzheimer’s, autoimmune diseases, multiple chemical sensitivity, whatever—these are all different variations of the same global epidemic, he went on. “This epidemic is caused by our exposure to harmful chemicals found in our homes, schools, workplaces, and communities. Alan, your specific illness is the result of the environmental toxins you were exposed to, combined with the genes you were born with. Other occupants in that building exposed to those same toxins may have experienced a host of different diseases, depending upon each person’s biochemical fingerprint.”
Nobody, in all of my doctors’ visits and networking, had ever connected the dots for me like that. I nearly dropped the phone as this stunning thought hit me: my plight was the tip of this huge iceberg.
I asked the scientist why there wasn’t more research examining the links between disease and common environmental exposures, so more people would be aware of them.
“Because there’s no funding for it,” he said.
“Well, why not?” I pressed.
“Unless a pharmaceutical company can make money off a drug, nobody has the incentive to fund this kind of research.”
“Are there any charities that raise money for research on human environmental health?” I asked.
“I don’t know,” he answered, sounding slightly irritated now. “Look it up.”
So I did. I looked up environmental charities and found charities to save the whales, save the birds, and save the rain forest, but I couldn’t find one devoted to saving the humans.
Next, I began calling all of the major charities raising money for research on different human diseases. When I got people on the phone, I’d ask if they knew about environmental risk factors related to the particular disease they were fighting, and of course they’d say yes.
“Well, do you fund any research on the biochemical mechanisms involved between environmental exposure and human disease?” I’d ask.
Every one of them said, “No, we don’t study the biochemical mechanisms. We don’t address causation. We raise money to treat the disease.”
I was frustrated. Incredulous. And, most of all, angry. I could see this huge void in the collective research. Clinical researchers were experimenting with different treatment protocols for diseases. But they weren’t focusing on the biochemical mechanisms linking environmental exposure to human disease; few were explaining how and why chemicals were making us sick.
Meanwhile, my plight was shared by people all over the world: milli
ons and millions of people were getting sick and dying from various illnesses resulting from the intersection of genes and environmental exposure. This blew me away. Millions were dying; like me, many were disabled and imprisoned. And so much of this suffering could easily be prevented if people only knew about the harmful effects of ordinary chemicals that surround us and learned how to avoid them.
Nobody else seemed to be hitting this thing between the eyes. Maybe I was the one who had to do something. But what?
• • •
I should have seen the end of my marriage coming. Susan had been spending less and less time with me and more nights at the apartment in Tucson. Yet I still felt blindsided when my wife finally left me. I suppose that was partly because it all happened so fast.
The year Ashlee turned six, Susan said, “I’d like to talk to you in the kitchen. I have something I need to tell you.”
I could tell by the tone of her voice that whatever she needed to say wasn’t good. Still, I sat with her and hoped it was something small—a dent in the car, maybe, or that she needed more money for school.
Instead, Susan said, “I’m leaving you.”
“What do you mean, you’re leaving?” I asked.
“I’m sorry, Alan. I have a new job. I’m leaving you. I want a divorce.”
I stared at her with my mouth open. I didn’t even know she’d been searching for jobs. “When is this going to happen?”
“The movers are coming tomorrow,” she said. “I’m sorry. I just can’t do this anymore.”
Susan had planned everything in advance. I wanted her to wait so we could talk to Ashlee with a counselor, but Susan insisted on telling her that very night in the kitchen. I sat there stunned while this unfolded. I still couldn’t believe my marriage was over for good.
But it was. The next day the movers came, and for the next few years Ashlee shuttled between us.
From the people I’d met at Seagoville, and from Dan Baker, too, I understood that chronic disease takes a severe toll not only on its victims but on the people around them. After watching me fall prey again and again to symptoms triggered by exposure to toxic chemicals, Susan still couldn’t acknowledge that I suffered from a “real” illness caused by invisible but deadly assailants. She couldn’t comprehend that I was vulnerable to environments that left many other people unaffected, and she simply had run out of patience for living with an invalid.