Poisoned Read online

  What Dr. Seastrunk said next floored me: “Absolutely, I’ve seen people like you before, and I’ve been fortunate enough to be able to help a lot of them.”

  He told me about his work with Gulf War veterans suffering from exposure to toxins causing symptoms similar to mine. He also talked to me about the kindling effect, which he described as a “cascade effect” in my nervous system caused by my neurons becoming hypersensitive after an initial environmental insult.

  “In your case,” he said, “the lesions on the frontal right lobe of your brain were most likely caused by environmental exposure to toxins. Plus, because your liver is compromised, it can no longer totally remove toxins you’re exposed to. I’m going to give you a medication that will almost certainly help you.”

  I couldn’t believe it. This man wasn’t boasting. He seemed sincere. “But now you’re going to tell me that the pills I take will make me worse before I get better, right?”

  He laughed. “No. If this drug works, you’ll feel better right away.”

  The medication Dr. Seastrunk prescribed for me was called Neurontin—the brand name for gabapentin—a synthetic amino acid that had originally been developed by the Japanese.

  “Neurontin was developed as an anticonvulsant and analgesic,” he explained. “Physicians typically prescribe it to help control epileptic seizures and treat neuropathic pain. For people who have experienced brain injuries, this drug helps stabilize injured brain cells and stops them from misfiring.”

  The drug basically acts like a Band-Aid for brain cells, he added, giving them time to heal by protecting them. “Your brain is constantly in a state of fight or flight, misfiring continuously in response to things in the environment that most people don’t even feel,” he said. “The Neurontin may help prevent that from happening.”

  “What about my immune system?”

  “If we treat your brain and it heals, your immune abnormalities should also improve.”

  Suddenly remembering an earlier, very different, diagnosis, I asked, “Why did my doctor at the Cleveland Clinic tell me that I had a prolapsed heart valve?”

  “I believe his diagnosis was incorrect. Your abnormal heart test results were caused by the misfiring of your brain cells that mimicked a false positive for a ‘prolapsed valve.’ You don’t have any structural abnormalities in your heart.”

  “How long will I have to be on it?” I asked, still doubtful.

  “That depends on the result,” he said. “Everybody’s different.”

  “Yes, but are you talking about weeks? Months? Years?”

  “Years,” Dr. Seastrunk said. “But our goal is to eventually help your brain heal to the point where we can wean you off the drug.” He disappeared for a moment, then came back with a pill bottle. “Here.”

  “Wait. You want me to start the drug right row?”

  “Yes. That way I can monitor you,” he said. “I’m going to start you on a low dose and titrate you up slowly. If I started you on the therapeutic dose, there’s a chance it would blow you away.”

  “What about side effects?” I asked.

  He listed a number of possible side effects, including fever, dizziness, viral infections, migraine headaches, lethargy, and fatigue. None of those worried me, since I was already battling with those symptoms—and more.

  “It’s not going to work, you know,” I said.

  “I think you’re wrong,” Dr. Seastrunk insisted. “The lesions we see in your brain are similar to what we’ve found in other victims of environmental illness. They’ve responded well to this medication. You will, too.”

  “Fine,” I said, too tired to keep arguing. “Tell you what. Give me a prescription and I’ll take Neurontin at home.” I explained it would be impossible for me to stay in this hospital, with all of the chemicals in the air. “You’re not set up for me. Just being here might kill me, and you know that.”

  To his credit, Dr. Seastrunk agreed that my approach made sense, provided I agreed to be in touch with him regularly by phone so that he could monitor my reaction to the drug. He wrote me a prescription.

  As we seated ourselves on the plane for the flight back to Arizona, Ashlee was giddy, nearly beside herself with joy. “I told you this doctor was going to do something to help you. I told you!”

  I smiled down at my little girl. Like me, she was a fighter, and that made me proud. The hardships in her life hadn’t robbed her of enthusiasm and resilience. In fact, facing up to adversities had strengthened her character.

  At the same time, I couldn’t share her enthusiasm.

  As the plane rose above the tarmac, I glanced at Ashlee again. For her sake, I had to act like I believed better days lay ahead of us.

  • • •

  The bottle of Neurontin capsules sat on my counter for two weeks. When Ashlee was at Susan’s place, she’d call to ask if I’d started taking them yet. When she came over, she pestered me about beginning the medication.

  “I know you’re afraid, Daddy,” she said, “but you have to try.”

  One night, after she’d left my house and returned to her mother’s, I picked up the bottle, studied it for a moment, and unscrewed the cap. It was filled with orange capsules.

  I tipped the bottle and let one of the pills fall into my hand. I had to suppress a laugh as I looked around my barren Tucson home. As if I were dying, my life flashed before my eyes, an unlikely chain of events that had landed me here, with this orange capsule in my palm: prosecuting gangsters and drug lords in Florida, holing up in the high desert in Elgin, surviving the leper colony of Seagoville, languishing at the castle in Cabo, barricading myself in my Tucson bubble, and pushing for the Environmental Health Foundation’s first summit.

  Through all of those events, Ashlee was there. Ashlee wanted me to take this pill. I did not for one second believe this drug would work. But Ashlee did, so I owed it to her to try it. I went to the refrigerator, took out a bottle of water, popped a capsule into my mouth, and washed it down.

  The deed was done. What would the morning bring? If this was going to be the end for me, at least people could say I’d gone down fighting.

  • • •

  I woke up the next morning, relieved that the medication hadn’t killed me. But the bigger surprise was that I’d slept through the night.

  Ironically, despite my fatigue, pain typically prevented me from resting. Had the Neurontin allowed me to sleep?

  I was well aware of the placebo effect. Unfortunately, no matter what treatments I’d tried over the past few years, not one of them had ever tricked my body into feeling better.

  I immediately telephoned Ashlee, who’d spent the night at her mother’s house. Before I could tell her about my marvelous sleep, she said, “Did you take the medicine?”

  “Yes, I did.”

  “And?”

  “Nothing bad happened. In fact, it was kind of strange. I actually slept all night.”

  “So it’s working?”

  I could hear the excitement in her voice. My first impulse was to temper it. No way would this medication work. Nothing ever had.

  “I don’t know,” I said cautiously. “Maybe. At least it’s not causing any negative reactions.”

  “Isn’t it pretty good for you to be able to sleep through the night?” she insisted.

  “Well,” I hedged. “It’s not like I’m dancing on the table or anything.”

  “Did you dance on tables before I was born?”

  I laughed. “No.”

  “So this is it, Daddy. I know it is! I love you. I’ve got to go to school now. Bye.”

  I lay in bed for a few more minutes, allowing a spark of optimism to bloom in my chest.

  • • •

  I continued taking the Neurontin under Dr. Seastrunk’s supervision by phone, gradually ramping up the dose over a period of weeks. It was astonishing: I could actually feel my body healing in ways that were small but significant.

  My pain was beginning to dull into a background ache i
nstead of something incapacitating. The vertigo had lessened. I continued to sleep well and began feeling stronger and more energetic.

  Still, I stuck to my careful routines. I didn’t want to risk a crash. If this drug was really doing its job, there would be time for everything.

  I waited a week. Two. Three. Finally, when I’d been on the pills a month, I made a momentous decision: I was going to try walking out the front door without my oxygen tank and stroll through my neighborhood. I was going to pretend to be normal.

  On the day of my big adventure, I rose early to go outside while it was still cool, and before people filled the air with hydrocarbons from their cars. I felt as nervous as I imagined athletes must feel before the Olympics, even though I was only planning to take a short walk.

  I showered and put on my reliably comfortable University of Miami Hurricanes tracksuit. To the outside world, I would probably look like any scruffy, suburban Dad.

  At the entrance to my fortress, I opened the air-lock door and stepped outside. As I hovered on the front step, all of my alarm bells went off. Panic struck. I had no idea what to expect.

  Should I take a deep breath, or just experiment with shallow ones?

  I took several short breaths and tried to force my mind to stop racing. My body seemed to be fine. My head was clearer than it had been in years, and the cool morning air felt luxurious against my face, especially around my mouth and nose, which were so often covered by the oxygen mask.

  After a few minutes of hesitation on the landing, I put one foot in front of the other and began slowly walking toward the street.

  I could feel my face breaking into a smile as I tipped my face to the sun and walked toward the edge of my property. When I reached the street, I turned around and looked back at the bubble, imagining my abandoned oxygen tank inside the door. Again, I couldn’t shake that image of me as an astronaut, only now I was free from the mother ship and drifting in space.

  Which way should I go? Right or left? I’d never made this choice before. Who would ever imagine that simply being able to choose your own direction could inspire such momentous feelings of joy and freedom?

  I turned left, wondering if I could walk as far as the next house. I set that as my goal and proceeded cautiously. All that lay between me and my neighbor’s front door was air! How splendid was that?

  Suppressing a laugh, I imagined walking up and knocking on the door, saying, “Hi, I’m your neighbor, Alan. I’ve been stuck inside my house for years, but I can go outside now. I hope to see you around!”

  Naturally, my neighbor—whom I’d never met—might call the cops, thinking I must be some psych patient who’d gone off his meds.

  That first day, I stayed outside for ten glorious minutes before retreating back to the house—not because I was feeling bad, but because I was afraid to push my luck.

  I was bursting with excitement. I had cursed, hoped, prayed, researched, and seen one doctor after another in an attempt to regain my former life. I no longer cared about achieving anything that grand. Not anymore. To me, just being able to step foot outside my home without an oxygen tank was a huge deal.

  Over the next few days, I extended my outdoor excursions bit by bit, until finally I decided I was ready to spend half a day walking in the Tucson foothills. For a man who’d grown up among the flat green marshes of southern Florida, then had been confined to a bubble for years, the experience of being outside in the dry Arizona air was amazing. Being surrounded by mountains, deserts, flowers, cacti, and exotic wildlife that included coyotes and tarantulas presented a sensory overload.

  Each creature I saw, from a lowly lizard to a gorgeous butterfly, filled me with delight. As I walked, breathed, and took in the sights and smells around me, I realized that my body had not only been protected by the bubble; it had also been severely deprived. I’d been on a sensory retreat as well as a chemical one.

  The environment I’d been living in was gray and lifeless. I’d chalked that up to depression. Now that I was on the Neurontin, I understood that my illness had dampened my senses. Possibly, that was my body’s way of shutting down unnecessary functions to conserve energy and protect me. Now, like Rip Van Winkle waking up from his coma, my senses were miraculously restored.

  • • •

  By the second month on the Neurontin, Ashlee began accompanying me on my walks around the neighborhood. Being outside with me was such a novelty that she eyed the landscape with the same childlike wonder I did, exclaiming over everything from the lizards skittering in the underbrush to the birds winging overhead.

  In the past, Ashlee had to leave the bubble alone because I was trapped inside. She’d explored the limits of our three-acre property like a junior geologist, scavenging different kinds of rocks. She also loved building forts and playing imaginary games in them.

  Now she stayed close to me, holding my hand whenever she wasn’t darting ahead to investigate something or collect some natural wonder to show me, chattering excitedly as we walked.

  Whenever Ashlee was at her mother’s house, I’d take my walks and then call to talk with her after school, describing what I’d seen.

  “It makes me so happy that you can go outside now,” Ashlee said during one of these conversations.

  “Me too.” I was glad to hear her sound so joyful over the phone, but I was hatching a plan to make my daughter even happier. I knew the next thing I said was going to blow her mind: “Ashlee, I want to take you shopping. Let’s make a date. I think I’m ready for the mall.”

  I was grinning as I spoke. Until that moment, I had nearly given up imagining being able to say these words. In an ironic twist of fate, the daughter I fought to stay alive for—so she wouldn’t be fatherless—had saved my life.

  13 • REENTERING THE WORLD

  PEOPLE WATCHING ME WITH ASHLEE on that first excursion to the Tucson Mall must have noticed something curious: while most children excitedly drag their parents by the hand around stores, begging Mom and Dad to buy things for them, in our case, I was the excited one. I stopped every few minutes to exclaim over displays in the shopping center as if I were in a museum examining artifacts of a foreign culture.

  I had retreated from the world in 1989. Now it was 1996. Between those years, there had been innumerable technological advances. Why were people talking on cell phones at the mall? What were computers doing in the shops? Why was everyone wearing such bizarre clothing?

  “Come on, Daddy,” Ashlee kept laughing. “Don’t you know about that? Let’s keep moving.”

  Ashlee knew exactly which stores she wanted to show me. For my part, I was too keyed up by the vivid smells and sights around me to care about our exact destinations, despite my daughter’s heat-seeking agenda.

  She had always chosen her own clothes. Now that Ashlee had gotten me to the mall, she was determined to make the most of it. My daughter led me through Dillard’s, Macy’s, Claire’s, and other stores that were just a blur to me. Ashlee’s biggest thrill, though, was visiting the food court with me. Even though I still didn’t trust my body to digest anything other than the careful roster of safe organic foods, I happily watched her devour a pastry from Cinnabon.

  I’d started with 300 mg of Neurontin three times a day. Over the next few months, I ramped up to 4,800 mg of the drug per day. My health continued to improve. I wasn’t cured—certain things still set me off—but I was far less sensitive to everyday chemicals, and many of my symptoms had abated.

  When I told my primary physician how much Neurontin I was taking, his eyes nearly popped out of his head. “That’s enough to kill a horse,” he said.

  I shrugged. “It’s not killing me.”

  I could only hope that was true. Far more important to me, though, was the fact that my life with Ashlee was beginning to assume a shape familiar to most parents: we took walks, went to the mall, and eventually started seeing movies together. The first time I felt the rumble of a THX movie system, I nearly jumped out of my skin.

  I also took
her to a Go-Kart track in Tucson, remembering Ashlee’s love of speed as a toddler, back when I’d race around with her in our Florida neighborhood. The faster we drove around the track, the more she loved it. I could hear my daughter’s laughter even over the roar of the engines as Ashlee’s little helmet bobbed around while she was sitting next to me.

  The world was coming at me fast and loud, but I was welcoming it with open arms. I’d been away far too long.

  • • •

  My release from the bubble granted me an unexpected gift: a sixth sense. I could now determine with some accuracy when toxic chemicals were around me. I was like a drug-sniffing dog able to detect low levels of toxins that other people couldn’t sense.

  This was a wonderful gift because if I could channel it, I could call upon this new superpower to alert others to danger. However, it was also a great responsibility because I constantly felt obligated to help prevent others from poisonous toxic exposures—and I knew many of them wouldn’t believe these poisons were in their environment. Alarm bells went off in my body whenever I was around toxins, even though the Neurontin kept me from reacting to them. Yet nobody else seemed to sense what I did. How could I convince them that these poisons really did exist in our everyday environments?

  My sense of smell was heightened. In the shopping mall with Ashlee, for instance, I picked up things coming at me from all directions: perfume, fabric softener, hair spray, cologne. I’d been terrified by this discovery at first. I was afraid something would set me off and I’d experience the symptoms that had disabled me before: headaches, eye irritation, tightened muscles, congested breathing, or seizures. What if I had such a severe reaction that I wouldn’t recover, even on the Neurontin? Fortunately, my body held up well, despite all of my warning bells clanging at once.

  I soon learned that I could walk into any restaurant, store, business, or house, and determine immediately if my surroundings were clean or not—the same way you might be aware of the popcorn smell in a movie theater as you enter through the cinema doors and the odor of fake butter hits you. I could even sense where a chemical concentration was higher as I walked toward it or away from it, sort of like that “you’re getting warmer and colder” game my siblings and I played as children. As Dr. Seastrunk had suggested, Neurontin was acting like a Band-Aid on my brain: I still sensed these chemicals around me, but, like touching a cut on your finger that’s now covered by a bandage, the sensations of those chemicals assaulting my body were lessened to a degree that I could tolerate them.