by Alan Bell
• • •
I checked myself into our local hospital after collapsing at the fair. The doctor on call diagnosed atypical pneumonia when I listed my symptoms. “I’ll put you on an IV with antibiotics and steroids,” he said.
I nodded weakly in agreement. Who was I to question him?
Within a few hours of being put on the IV, I had this incredible burning inside my chest, as if someone had lit a fire inside my rib cage. The flames burned up to my throat, searing the inside of my esophagus.
I screamed and writhed in pain. The hospital staff hurriedly wheeled me into an operating room, where they sedated me and performed an emergency endoscopy. When I came to, the surgeon visited my room to report the results.
“Your esophagus is covered with candida fungus,” he said. “That’s why it feels like you’re burning up inside.”
“Why would that be?” I asked, still half out of it from the procedure.
“It’s usually the result of a weakened immune system,” he explained. “Small amounts of candida are always present in our mouths and digestive tracts, and in other parts of the body, too. Normally they’re kept in check by bacteria and other microorganisms. You were probably on antibiotics for so long that the ‘good’ bacteria in your body was wiped out. That left you totally susceptible to the fungus, which is eating away at your esophageal tissues.”
“I don’t understand,” I said. “I took the antibiotics just as prescribed. Is there anything else that could be causing my immune system to break down?”
“It could be a virus,” he said. “We’ll run some tests. Have you ever been tested for AIDS?”
I shook my head. I’d never even heard of AIDS at that point in my life.
My AIDS test was negative, and other diagnostics were inconclusive. Nevertheless, the doctor prescribed antifungal drugs, without any positive test result supporting this aggressive “shotgun” method of treatment. “We’ll start you on a new IV,” he said.
“No,” I answered. I couldn’t handle the thought of taking one more medication that might cause me even more pain. It sounded to me like this doctor was only guessing. For the first time, I questioned the competency of the “almighty” medical profession, and I wanted to do my own research and find a specialist before I agreed to any other treatments. My very life was at stake.
I removed the IV line from my arm, staggered to my feet, and somehow pulled on my clothes. I managed to get myself out of the hospital and into my car, but I couldn’t make it very far. I pulled over and called Susan to come meet me in a park because I was too weak to drive all the way home.
Susan spread a blanket out on the ground when she arrived. I stretched out on it and closed my eyes, trying to gather enough strength to move again. Something was totally broken in my body. There was a deep-seated feeling of darkness inside me now. For the first time, I felt like I had come face-to-face with my own mortality.
I wasn’t afraid to die. But I was beginning to feel scared my little girl would grow up without her daddy.
• • •
The day after Susan picked me up from the hospital, I called the University of Miami Medical School. I was still putting my faith in the medical establishment; I was convinced that my getting well was just a matter of finding the right professional, someone with the expertise to diagnose and cure me.
At the University of Miami, I saw a hematologist, who ordered blood tests and offered a new diagnosis: Epstein-Barr virus, the virus that causes mononucleosis.
“Your antibodies are through the roof,” he said. “All you need to do is rest, and it will go away. Give it time.”
I took him at his word because he had offered me solid, scientific, irrefutable proof: antibodies to the Epstein-Barr virus were in my blood. We finally had an answer!
Relieved, I continued working, putting one foot in front of the other. Every day, I’d reduce my high fever by loading up on aspirin and go sit at my desk in the 110 Tower. I tried hard to work, but often did little more than stare out at the ocean, feeling like I was in a boat on a pitching sea. My joints were on fire; my whole body ached. I worked at home on my worst days and asked for help on my cases whenever I could, telling myself, over and over, that it was just a matter of time before I beat this thing.
Meanwhile, more odd symptoms appeared. It seemed like I was making my way through a maze of new obstacles every week. I’d always loved the smell of certain women’s perfumes, but now, within moments of becoming aware of someone wearing perfume and thinking it smelled good, I’d double over in pain. If I was driving in traffic with the windows down, the car exhaust would make my lungs seize up.
Back then, cigarette smoking was still allowed in the courthouse. I’d never minded this before. But on the increasingly rare occasions I went to the courthouse, I’d walk through billowing clouds of smoke in the hallways and feel like I was being poisoned. My eyes teared up, and I could hardly breathe. On the even rarer occasions when Susan and I ate out, if someone lit a cigarette at the next table, I’d have to leave the restaurant with my food still untouched.
“Come on, Alan, this is silly,” Susan said after one such incident. “What are you doing? You can’t possibly be this sensitive. You didn’t even eat your dinner, and we still had to pay for it.”
“I’m sorry,” I said. “I can’t tolerate cigarette smoke anymore. Maybe I’m allergic to it or something. I don’t know.”
Driving in my new car was starting to make me feel nauseated, and I could no longer tolerate air-conditioning. Anyone who has ever lived in South Florida knows that air-conditioning isn’t a luxury—it’s an absolute necessity for survival in this region’s hot, humid climate. But I simply couldn’t handle it. One night, my shivering and wheezing got so bad, I had to retreat to the patio and sleep outside. Susan found me there one morning.
“What are you doing out here?” she asked, obviously bewildered. “How can you sleep on that lounge chair?”
“It’s better than the air-conditioning,” I replied. “I don’t know if it’s the quality of the air or the temperature, but I can’t stand it anymore.”
“What do you mean? That’s crazy! You can’t sleep out on the patio every night!” She shook her head and left me there.
Another day, while I was walking on my treadmill at home in a desperate attempt to keep up my muscle tone, an exterminator came to spray for pests. In South Florida, it’s common to have your house sprayed regularly for bugs; I’d grown up being around these pesticides. But this time, when the guy started spraying around me, I passed out on the floor.
I didn’t understand why all of this was happening to me. I’d never been allergic or even sensitive to anything the way I seemed to be now.
As a college athlete, I had learned how to train through pain. I opted for the same stoic approach now, refusing to cave in to my symptoms completely. I did whatever I could to live a normal life. I had a family to provide for and clients who depended on me. I continued spending time with Ashlee whenever I wasn’t working.
Being at the beach always seemed to make me feel better—although I had no idea why—so we started spending more time there. Once, I felt well enough to dive into the ocean and retrieve a starfish that Ashlee carried in her hand everywhere she went. We named him Billy.
When feeling too sick to move, I’d lie on the floor and let Ashlee use me as a human jungle gym. The sight of her grinning always lifted my spirits.
Eventually, I began having real trouble breathing. I literally couldn’t draw a full breath of air into my lungs and started wheezing constantly. My colleagues at Travelers continued trying to cover for me, but my work was definitely suffering. I wasn’t getting enough oxygen to think straight. Sometimes I felt so ill that I’d have to postpone my private cases, too, because dragging myself across the street to the courthouse became practically impossible.
On the rare days I managed to get myself to the office, I was so exhausted by the end of the day that I struggled against dozing off
at the wheel as I drove home. When I arrived, I’d hug Ashlee and play with her a little if she was still awake, then crash into bed. The next morning, I’d wake up and do it all again. I was hardly eating and started losing weight.
Susan had to gradually take over more and more household responsibilities. By now she was doing most of the child care, even at night, plus all of the grocery shopping and meal preparations. We were forced to eat at home nearly every night since I usually didn’t feel well enough to go out. As a precaution, I avoided all artificial or processed foods, which added to Susan’s burden in the kitchen. I tried ordering takeout food from the Chinese and Italian restaurants I’d always loved, but I couldn’t hold down the food. Even pizza no longer agreed with me.
If we had to deal with anyone outside the house—our car mechanic, the yard crew, delivery people—Susan had to be the one to do it. She also took over managing our finances. That proved to be a disaster. Within a year, she managed to bounce fifty-two checks. I happened to stumble upon this fact by accident one day when I pulled open a desk drawer and realized it was full of overdue notices.
“What’s all this?” I asked, staring helplessly at the jumbled piles of bills and notices. “Why are all of these papers stuffed in the drawer?”
“It’s nothing, Alan,” she said. “Come on. Lie down. I’ll take care of it.”
“What do you mean, it’s nothing? Susan, you can’t just toss bills in a drawer. And how did these checks bounce? We have plenty of money.”
She looked down at her feet and mumbled something about forgetting to transfer money from one account to the other. I was angry, but I felt bad about losing my temper with her, too. Susan hadn’t signed on to be my accountant any more than she’d signed up to be my nursemaid. I felt sorry that I was putting her in this position, but I didn’t have the energy or cognitive ability to do more than survive one day at a time. I pushed the envelopes back into the drawer and left them.
4 • THE DOCTOR SHUFFLE
AS I STARED AT THE ocean outside my window in 110 Tower, my body was bathed in sweat as I struggled not to vomit. I tried my best to stay still, hoping the nausea would dissipate before my court hearing scheduled for later that afternoon. Otherwise, I’d never make it through.
My phone rang as I was mopping my forehead for what felt like the thousandth time. It was the judge’s assistant calling to reschedule the hearing. Thank God, I thought. Now I wouldn’t have to be the one to cancel—again.
As we spoke, the assistant could hear me sniffling and wheezing. “Are you sick, too?” she asked.
“Yeah. I’ve been fighting allergies or some sort of flu,” I said.
“It’s the building, you know.”
“I’m sorry?” I thought I must have misheard her.
The assistant explained that the judge she worked for had fallen ill and blamed it on mold in the courthouse. She went on to say that she’d heard of other people who worked in the courthouse falling ill, as well as in new buildings like 110 Tower.
“It’s because there’s no fresh airflow in these buildings,” she said. “The closed ventilation system is a serious problem. There’s mold and all kinds of bad stuff in the carpet and paint.”
“Huh,” I said, already turning my attention to the next item on my “to do” list. “That’s all very interesting.”
I must have sounded dismissive, because the assistant became agitated and adamant. “Let me tell you something right now, son,” she said. “You’ve got to get out of that building immediately. Run, don’t walk! The judge can hardly work or function. You need to get out while there’s still time!”
I hung up the phone while staring out the window, shaking my head. That woman sounded like a lunatic.
• • •
No matter what the outcome, I was determined to get to the root cause of my illness. Although I finally had to admit that I was no longer a bulletproof athlete and attorney, I remained convinced that there had to be a physician somewhere out there with the expertise to “fix” me.
During the next year or so, I left no stone unturned, doing what I dubbed the “doctor shuffle.” I saw physician after physician, eventually losing count. It only takes one good doctor, I kept reminding myself. Then my life can return to normal.
The doctor shuffle usually began with me in an exam room as a physician breezed in with an air of confidence, asking how he could help me today. I would list all of my symptoms as the doctor flipped through my ever-growing medical file and nodded.
By now, I’d accumulated a host of symptoms and hundreds of test results. I’d earned diagnoses of fatigue, fibromyalgia, cognitive dysfunction, short-term memory loss, disorientation, blurry vision, impaired coordination, inflamed joints, gastrointestinal dysfunction, respiratory distress, asthma, and seizures.
Each time I saw a new physician, more tests would be ordered and I’d be sent away until the results arrived. Every time the results arrived, the doctor ordering them seemed slightly less cheerful and confident, or maybe even angry, as if I were part of a conspiracy to confuse him. It was as if eventually I’d hit a weak point in every physician’s psyche, that secret fear that they didn’t know as much as they thought they did.
This doctor shuffle would typically end in an awkward silence or something vague and noncommittal when they realized I had exhausted the limits of their knowledge. “It’s a virus. I don’t know what else to tell you,” some said.
“Maybe it’s an infection we can’t detect,” others suggested.
As I left one exam room after another, I could almost hear the physicians muttering, “Got to be a psych case” under their breaths.
I faced disappointment after disappointment, but every time I looked at my beautiful little girl, I became more determined than ever to keep going. I longed to watch my daughter grow up and to celebrate a golden wedding anniversary with Susan. The idea that I might have an untreatable illness never once crossed my mind. Up until that point in my life, I had never experienced pain, failure, or deep unhappiness. I was still an innocent.
The other person who kept me going was my brother, Bobby. Unlike Judi and me, Bobby hadn’t pursued a four-year degree. He had chosen to attend a junior college and then transferred to the University of South Dakota, where he was the star quarterback on their football team until he decided cold weather wasn’t for him. He returned to Florida and became a delivery truck driver for the Banana Boat company, a mom-and-pop operation that sold suntan lotion.
The owners were basically running the company out of a garage. They sold it to my brother for a small amount of money. I helped Bobby incorporate the company, served as his legal counsel, and helped him connect with an accountant, my good college friend and former fraternity brother, Barry.
When we were in high school, our father made a small fortune in real estate by selling property to tourists in a central Florida community known as Lehigh Acres. Dad’s job often involved meeting and greeting potential customers in the lobbies of Miami Beach hotels; because of his various hotel contacts, Dad knew many of the hotel owners and was able to get Bobby and me jobs as lifeguards during the summers when we were in our teens. Bobby often heard people complaining about greasy suntan lotion while lifeguarding, so he started mixing different ingredients—everything from coconut and fruit to baby oil and iodine—to see if he could create a more effective tanning formula. Although he had no formal education in chemistry, Bobby was creative and risk tolerant, and he possessed the instinctive gift to sell. Imagine this young, eccentric guy experimenting with all kinds of ingredients like a mad scientist: that was my brother.
Up until the mid-1980s, sun-care products were developed to help people tan, but by the time Bobby bought Banana Boat, there was evidence linking sun exposure to skin cancer. This prompted him to research and develop high-SPF sunblocks. Bobby remembered the western TV shows we’d both loved as kids, and how gunshot wounds were often treated with aloe plants. He decided to research skin-care products using aloe to
help heal sun-damaged skin.
When Banana Boat brought Aloe After Sun Gel to the market, Bobby saw his company boom as the gel became its bestselling skin-care product. With him as CEO, Banana Boat grew to become the second-largest sun-care brand in the world.
Ironically, during the years my brother was building his business, my health and career were declining rapidly. My work at Travelers Insurance began to unravel as I kept getting sicker. It killed me to ask others to cover for me and do my work—I had always prided myself on performing my responsibilities at the highest possible level—but I had to accept the help. My private practice trickled down to nothing. Eventually, I had to face the reality of my plight and step away from my professional responsibilities.
I’d always been the big brother, the one my younger siblings looked up to whenever they had problems that needed solving. Now the tables were turned. Bobby stepped up to the plate.
“Don’t worry, Alan,” Bobby said. “I’ve got your back. Whatever happens, I’ll be there for you.”
He was, too. Bobby kept me on as general counsel for Banana Boat, a job that was flexible enough for me to do during times I felt well enough to work. Later, he’d save my life again and again with his brotherly support.
• • •
Thanks to the support of Susan, Bobby, and the rest of my family, I had the resources to begin searching for the best allergy and immunology specialists across the country. My first stop was National Jewish Health in Denver, Colorado, an academic medical research facility dedicated exclusively to the research and treatment of respiratory, allergy, and immune disorders. I saw Dr. Charles Kirkpatrick, a physician and professor in the division of allergy and clinical immunology at the University of Colorado.
Dr. Kirkpatrick was tall and silver-haired, with a commanding air of authority; he was clearly well respected. Because National Jewish Health is a teaching hospital, he entered the exam room accompanied by a flurry of assistants and associates who seemed to hang on his every word, as Dr. Kirkpatrick flipped through my blood work and frowned.