by Alan Bell
Every illness creates a zone of collateral damage around it. My marriage to Susan was part of that collateral damage.
I felt hurt, angry, betrayed, frustrated, helpless: you name it. However, what I felt more than anything was a steely resolve. I doubled down on my determination to beat my illness and vowed to do everything in my power to give Ashlee a happy, healthy childhood. Yes, her parents might be divorced, but she had a father who loved her and would always be in her corner.
10 • SAD GOOD-BYES
SUSAN LEFT THE DAY AFTER Christmas of 1993. The first week of January 1994, my family flew to the rescue and visited me. As we discussed ways I could care for myself and Ashlee now that I was truly on my own, my sister, Judi, began running a high fever.
My family was worried that Judi might be coming down with the flu; they knew it could be lethal if I caught it, too. Judi went to my internist to get checked out. He was worried enough to send her for x-rays, which revealed lesions on her lungs.
The doctor hospitalized her and ran more tests, including various biopsies. These revealed more bad news: lesions on her brain and liver, and a primary tumor in her colon. The doctors told us the cancer was terminal. My sister was thirty-three years old at the time.
Judi chose to be treated at the University of Arizona Cancer Center because it was renowned as one of the best cancer institutes nationwide and she wanted to stay near me. As the doctors did what they could, they warned us they could probably prolong her life a little, but nothing more. Thank God for Dan Baker, who arrived immediately to support my parents at the hospital.
While Judi spent the next few months in chemotherapy, I worked the phone from inside my war room, calling alternative health centers around the world in search of experimental treatments Judi could try. I’d make the calls each morning, then drag myself to the car with my oxygen tank for the drive to the hospital, where I sat by my sister’s bedside.
One afternoon, I was sitting beside her when Judi turned to me with tears in her eyes. “I’m so sorry, Alan,” she said.
“Sorry about what?” I asked.
“That I didn’t understand before.” Her voice was so weak that I could barely hear her. “But I understand better now. I get it.”
“Understand what?”
She took a breath before continuing. “All those years you were sick, when this happened to you and you thought you were dying, you must have been so scared. I wasn’t there for you, and I’m sorry. I couldn’t understand what it was like for you. Now I do. I just wish it wasn’t too late for me to do anything for you.”
It was a heartrending moment. I didn’t want Judi feeling guilty or sad. I only wanted her to get better. I swallowed hard and rolled my wheelchair closer to the bed, then took her hand in mine. “Don’t worry about any of that,” I said. “We’re going to find a way to get you out of this. Then you can worry about whatever you want, okay? Promise me you’ll just focus on getting well.”
I knew my words were empty. The odds were against Judi beating the cancer that raged through her body. I think we both knew that. Still, I took comfort in saying this to her, and in trying to believe it myself. I felt worst of all for my mother. How terrible it must be for her, I thought, to watch her daughter die and to see her son so isolated and incapacitated.
From all of the research I’d been doing, I also couldn’t help but wonder if Judi’s cancer was partly triggered by whatever environmental toxins we’d been exposed to as kids, like the pesticides regularly sprayed to control mosquitoes. She and I shared similar genes, and those genes interacted with many of the same childhood chemical exposures.
Finally, after more phone calls than I could count, I found a place in Germany that was testing a new protocol for terminal cancer patients. My mother accompanied Judi there, and I talked to them by phone every day. Ultimately, however, the German doctors sent Judi back to the States, saying, “We’ve given you a little more time, but that’s all we can do.”
Judi and my mother flew back to Tucson and rented a house near mine. Judi wanted to stay in Arizona because she knew I was trapped there. In addition, she felt I could help her navigate through the medical labyrinth since I had so much experience in that strange, complex world.
I continued frantically phoning cancer clinics around the world. The next place I found was in Japan, where doctors were having some luck with advanced cancer patients. This time, Judi traveled with our cousin. She stayed in Japan a couple of weeks, but the doctors there couldn’t help her, either.
Judi returned to Tucson and was admitted to a hospice near my home. Still tethered to an oxygen tank, I visited her whenever I could. We couldn’t really speak much, since she was on a morphine drip and had a blockage in her throat that prevented her from talking. But she knew her big brother was there.
When Judi died, I was alone at home. My mother called to tell me that she’d passed, and I drove out to the hospice immediately. Judi’s eyes were still open. I took her hand, but it was already cold.
I drove back to the bubble feeling more helpless and alone than ever because I hadn’t been able to help Judi. I wasn’t even well enough to travel to my sister’s funeral.
I knew what time they were loading Judi’s casket onto an airplane destined for Florida for the burial. I sat by the window in my bubble and watched her plane rise from the Tucson airport, a gleam of silver against the blue sky, and wept.
• • •
I was already devastated by Susan leaving me. Now, I was gutted by my sister’s death. Witnessing the grief on the faces of my parents and brother made me more determined than ever to survive. With Susan gone, my daily routines—so carefully crafted and thoroughly maintained—had to shift once again. I still woke up each morning in pain, and my activities were severely limited. Many days I couldn’t even go out to the mailbox to collect the mail.
Clearly, I needed help. I found a sympathetic handyman willing to do odd jobs and clean the house using organic products. I also hired a woman who was happy to take Ashlee shopping for clothes when she needed them. Luckily, Ashlee had a mind of her own and a strong fashion sense; even as a young child, she had no trouble picking outfits that suited her taste.
Before she left me, Susan was doing the food shopping and cooking. I had no ability to do either, so I hired a young woman named Kristy who suffered a milder version of my illness and was sympathetic to my plight. She was healthy enough to shop and cook, and she understood my need to keep to a strict and simple diet of soy milk, spelt, quinoa, brown rice, carrots, sweet potatoes, red chard, kale, apples, and pears. Other than an occasional piece of steamed fish or skinless breast of chicken, that was it.
Ashlee adapted fairly quickly to the separation, since Susan had already been spending a lot of time in the apartment with her. She was in first grade by now and enjoying school. Since I wasn’t well enough to drive, whenever Ashlee came to my home from Susan’s apartment, I relied on a service called Kid Car to transport her between us.
Despite my physical limitations, I worked hard to be a good father. I put on a happy face any time Ashlee arrived at my place. I helped her learn to read using my reading box—she and I both loved books—or we played with toys that I bought from catalogs, with Ashlee’s help in picking them out. We drew and colored together. I couldn’t use felt or gel pens because those often contained toxic solvents. However, I discovered through trial-and-error that I could tolerate ballpoint pens with nontoxic, water-based ink.
Ashlee and I spent many hours simply talking. She was a profound thinker, even as a little girl. Our conversations were often deep philosophical musings.
We often engaged in imaginary play because I couldn’t tolerate most activities that brought me into contact with chemical exposures. During one of Ashlee’s favorite games, she sat on a kitchen chair while I stood about fifteen feet away next to a wall that protruded into the room. Behind the wall was a collection of her favorite toys—things I had already secretly removed from her bedroom.
No matter what we were doing, I tried to turn the bubble into an enchanted castle of hopes and dreams in the eyes of this little girl. Sometimes, I made stories up for Ashlee instead of reading to her. Her favorite tale featured a magic pumpkin. The pumpkin was like a human; he walked and talked and was famous. To compensate for the fact that Ashlee and I couldn’t have adventures on our own outside the bubble, I made up adventures for this pumpkin man that involved good deeds and always ended on a happy note.
It was tempting to do everything in my power to give Ashlee everything she wanted. After all, hadn’t I cheated her in some way out of having a healthy father? However, every child needs discipline, and Ashlee was no different. I taught her how to use good manners, and creativity made discipline easier on both of us.
On one occasion, I read Ashlee a book that featured a main character named Margaret. Because Margaret was beautiful and older than my daughter, naturally she was the subject of Ashlee’s adoration.
Occasionally, when Ashlee wouldn’t do her homework or clean up her room, I pretended to speak with Margaret by phone, acknowledging Margaret’s disappointment and assuring her that Ashlee would do better. This tactic worked like a charm. Ashlee didn’t want to disappoint her idol, so she quickly turned herself around. She would then hear me call Margaret to praise Ashlee’s hard work.
I also made up an imaginary person named Mrs. Butterfield, a stern authority figure who was closely following our lives. She was a handy person to call whenever Ashlee was being stubborn or disobedient. I had given Ashlee a guitar, and a music teacher came to the bubble; if Ashlee lapsed in practicing, I’d pretend to call Mrs. Butterfield on the phone and confide in her about it. I protested—loudly—when Mrs. Butterfield threatened to come over and scold Ashlee in person. Ashlee responded by quickly practicing her guitar.
Looking back on this time, I sometimes feel we were lucky, in a way. Ashlee and I had so much time together, uninterrupted by the usual things that typically fracture a parent’s day. I had no job. I couldn’t play sports. A social life was out of the question. When I was with Ashlee, I was all hers. How many parents really get that kind of blessed time with their children?
• • •
Ashlee desperately wanted a pet, like most kids. But, for me, a dog or a cat would be a death sentence.
Finally, we came up with a solution: a hamster! Ashlee named her hamster Snowflake and kept his cage in her room. Unlike most kids, who beg for pets and then wiggle out of caring for them, she had to be completely responsible for the well-being of her hamster, since I couldn’t go near it.
When the hamster was inside his sealed plastic exercise ball, the animal’s fur didn’t set me off. This plastic sphere allowed Snowflake to be in the main part of the house, running around on our bare floors. The floors were on two levels, with a few inches between them. The hamster would streak around in his ball, dropping or bouncing between the levels, and making Ashlee shriek with laughter. Eventually we got a second hamster, Squeaky, and the two went on to have ten pups.
I couldn’t engage in normal outdoor activities with Ashlee—things like zoos, malls, and even trips to the park were out of the question—so I tried to bring the fun to her. On Ashlee’s birthday, I rented a bouncy castle and popcorn machine and stood at the window of my bubble to watch through the glass as she played outside with her friends. I laughed at the fun they were having. Still, a small part of me wanted to curl up and weep because I couldn’t join the others when it was time to sing “Happy Birthday” to my own daughter.
• • •
I was feeling increasingly isolated as time passed. In addition to feeling deprived of one-on-one social contact, I realized that I was falling farther and farther behind on current events. Friends I talked with on the phone would sometimes mention a news story, and I would realize I had no idea what they were talking about; I often asked them to explain things. I might as well have been a castaway on some deserted island.
I eventually decided I’d had enough of feeling so completely cut off and decided to bring the world into my bubble via a television. This would be no easy task, since I reacted badly to EMFs—electromagnetic fields—emitted by televisions. But I had lots of time on my hands and a high degree of determination.
To find a creative solution, I tracked down a top researcher on EMFs in the University of Arizona’s College of Engineering, Dr. Stuart Honeig. I introduced myself and explained my situation. He, in turn, called Ed Beebee, his trusted assistant. Ed agreed to visit me and see if he could help.
Ed was intrigued by my problem. He told me that people in today’s world are exposed to millions of times more EMF radiation than our grandparents were, given the advent of things like cell phones, computers, and many other electronic devices. “Most of us just don’t feel them,” he said, “but you obviously detect dangerous frequencies other people can’t.”
I knew he was correct, though it had been a long process for me to figure this out. By now, I had become my own detective, always attuned to my environment as I tried to connect causes and effects when something triggered my body to react. With televisions, it was a simple matter of walking closer to one and then away; I could actually feel the invisible frequencies making me sick.
Ed had never seen anyone with my condition before, but he believed me 100 percent. He approached the problem as a scientist to help find a solution.
For starters, he hammered several 5/8-inch-diameter copper rods into the soil in my backyard, then ran cables from them into the house and connected these to anything that might generate an electric charge. Next, he and I concocted a plan for the television set, which essentially emitted the rays of a 15,000-volt electron gun. To a normal person, the rays weren’t noticeably harmful, but they sent me into a tailspin of reactivity.
“I think I have an idea,” I said, and pointed to the small, potbellied metal stove on the floor. The stove had a front opening. “What if we put a TV in that?”
Ed nodded, studying the stove. “If we do that, the TV will be shielded by metal on three sides, leaving only the open door for electromagnetic emissions.”
“Right. And we could cover the opening with this.” I showed him a clear Plexiglas shield I’d purchased. If you looked closely at it, you could see the Plexiglas was sprinkled with small pieces of thin lead foil that would block EMF.
Ed held it up. “Yeah, this could work,” he said excitedly.
I handed Ed my credit card and asked him to go to the store and buy a decent television that would fit inside the stove. When he returned, he installed the TV in the stove, ran wires out to the ground rods in the yard, placed the Plexiglas sheet over the front of the screen, then handed me the remote control.
I sat down on the leather couch about eight feet from the television. “NASA control, ready to launch!” I said. “Prepare for countdown. Five, four, three, two, one!”
The television flickered to life. Ed kept his eyes fixed on me, watching for any sign of a reaction.
I looked over at him and grinned. “No reaction. I think this will work.”
The first thing to appear on the television screen was a Time-Life infomercial advertising the greatest hits of rock and roll. I’d never seen an infomercial for the music I loved. I was mesmerized, especially because the collection featured so many songs by the Beatles. One of the few pieces of art in the bubble was my framed poster of John Lennon; I brought it with me wherever I lived.
“If you were to go out and collect all this music on your own,” the TV announcer said, “it would cost you well over a thousand dollars, but we have arranged it all for you for $149!”
“That’s amazing!” I said in disbelief. I glanced at Ed. “Did you know about t
his stuff?”
“Sure. Crap like this is on TV all of the time.” He was laughing.
“Well, I haven’t been able to watch anything for years, and I think this is great!” I hurried to the phone and ordered the collection.
My world was finally beginning to open up a little.
• • •
When I first began living in Arizona, I thought, “Oh my God, give me the city! Give me the ocean!” I was spooked by the desert and hated being surrounded by so much sky and such absolute quiet. As the months passed, however, I began to appreciate how serene and spiritual Tucson and its surroundings were.
Other people must have felt the same way, because the area attracted an abundance of alternative healers. One day, Dan Baker suggested that I see one of them, a man named Dr. Andrew Weil. “I think he might be able to help you,” he said.
“Sure. Great,” I said, though by now I was skeptical not only of traditional medicine, but of many alternative medical practitioners, too. I was especially wary of anyone promising me a “cure.”
A few days later, Dr. Weil called, saying he’d like to stop by and see me. “This week or next, if that’s okay?” he suggested.
“Sure, it doesn’t matter to me,” I said. “My days are all pretty much the same.”
A few days later, there was a knock on the door. Ashlee happened to be home; she was usually the one who answered the door, whether it was a delivery person or a visitor, whom she’d instruct to shower before entering the house.
This time she yelled, “Daddy, there’s a hippie at the door! He says he wants to talk to you.”