Recovery: One Patient's Saga

Hillary Johnson

In 2012, my closest friend called me. His manner was urgent.

He and I had met in journalism school in 1974 in New York. His byline was familiar to devotees of Rolling Stone magazine for decades as Charles M. Young. Around the magazine, he was known as “The Rev” for his unabashed habit of quoting scripture in his stories about heavy metal bands and Delta blues legends. He was a Buddhist but his father was a Presbyterian minister who was abashed by his son's writing and his pony tail. Chuck introduced the Sex Pistols and with them, punk rock, to the United States in 1977 and had been writing about rock music and its practitioners since the mid-1970's. His email address was "cmtinnitus" and his hearing loss, pay back for his devotion to his craft, was severe.

To me, he was simply Chuck, an abiding, intelligent force in my life who was somehow more precious even than family.

When I fell ill with ME on March 8, 1986 in Los Angeles, I called him immediately in a panic. Every day for the next two years, no matter where I was or what was happening in his life, he made it his practice to call me. He comforted me. He listened to all I told him, then he did his own research, making far more rational suggestions to help me navigate my charred landscape than any doctor I consulted. For the next thirty years, he was an engaged sounding board and adviser on all matters related to my disease and my desperate efforts to salvage what I could of the profession that been the great passion of both our lives.

I lived on $695 from the Social Security Administration each month during the decade I wrote Osler’s Web. Not surprisingly, I had periods of previously unimaginable poverty accompanied by the mental strain that is poverty's constant companion. One year, Chuck made an appeal on my behalf to the Fund for Investigative Journalism in Washington, D.C. “…the world has lost a great journalist,” he wrote in his unadorned, declarative style. He also described me to the distinguished group as “…a pit bull with a Steno pad.” Somehow, he persuaded the Fund that my topic was worth supporting. His letter resulted in the Fund’s largest gift, $2,500, a sum that allowed me to keep going at a point when I otherwise would have had to abandon the book.

 

By the time Chuck called me nineteen years later with some news of concern to him, I had been ill for twenty-six years. It was 2012. My deeply altered status was simply a fact of our lives. I never stopped cursing my fate, yet Chuck continued to listen, not only absorbing my grief but the intellectual part of what I was telling him. He knew as much about Natural Killer cells as he did about Keith Richards, his favorite interview subject. He knew the Centers for Disease Control’s corrupt history in this disease the way he knew the trajectory of George Harrison’s career. But this call was an unusual one for both of us.

 

He wanted to tell me about an acquaintance of his,Thomas Greer (a pseudonym), with whom he had become casually acquainted over the twenty-two years that Tom and his wife had lived in the same Upper West Side apartment building where Chuck had lived for three decades.

 

“Chuck and I had an elevator, lobby, mailbox relationship,” Tom told me later.

 

Asking tentatively, knowing I was likely to say No, Chuck said, “Will you talk to him?”

 

Chuck had encountered Greer in the lobby and was shocked by his appearance. After five minutes of conversation, Chuck mentally made the diagnosis one neurologist, a GP and two infectious disease specialists had failed to make.

“I think,” he told Tom tentatively, “you might have what a friend of mine has.”

 

“He’s really smart,” Chuck said to me, seeking to entice me.

 

I countered with something I knew from past experience: if Tom Greer really had ME, I was the last person on earth he would want to talk to. What could I say? I had been sick, by then, for nearly three decades? Nothing I tried had worked? My life had been destroyed? The federal health agencies were run by liars and misogynists who either thought or hoped the disease was a joke? There had never been any money to speak of for research and what little there was early on had been stolen by government scientists in Atlanta? No one was looking for the cause?

 

I knew I was constitutionally incapable of frosting the reality of ME with soothing reassurances. I could muster no “happy face” to plaster over the past or present. My experience of interviewing government scientists and policy makers who assured me that ME was fakery, mass hysteria and guaranteed to “blow over” had induced a profound cynicism I had been unable to dispel, even years after the fact. I assured Chuck that his friend would be not merely floored by such news but thrust deeper into despair.

 

Chuck persisted: “He needs to know what you know.”

 

I remained dubious. I remembered vividly how shocked I was when, thirty-five years ago, after being sick for less than six months, I called a woman who was a support group leader for an interview. (Yes, real people used to meet in real time in physical spaces and talk to each other in long paragraphs.)  Before I said goodbye, I thought to ask her how long she had been ill. “Five years,” she responded. The phone receiver almost flew out of my hand. Five years? How was that possible? I couldn’t get off the phone fast enough. Since then I’ve learned there is a tendency when you first fall ill to think the disease began the day you got sick, that it has no past, no larger context. Thanks to the government’s move toward politicizing the disease rather than conducting research on it beginning in the early 1980's, there exists no collective consciousness on the matter. In spite of a potential pool of four million people in the U.S. alone who are incredibly sick, a pool that expands daily, the general public has no idea what ME is or that they are at risk.

 Finally, sheerly out of respect for Chuck, I told him to give Tom my phone number.

A week later, I heard from Tom. I knew almost immediately he had ME. My method (laugh, if you must): when at least three doctors in different specialties say they have no idea what is wrong with you, you have ME. Sadly, the Centers for Disease Control refuses to adopt my simple criteria. Hoping I might be wrong, I didn’t tell Tom that I believed he was suffering from ME.

I respected his calm manner in the face of obvious trauma, his simultaneous effort to lay out the facts as he knew them. I respected his even-handed recitation of events, his courteous manner. I was especially impressed to hear that Tom had ordered a used copy of Osler's Web and had already begun reading it. I could tell he was steeling himself for the worst.

I soon understood why Chuck liked him and was so concerned.

 

I also was struck by Tom’s voice: rich, and every word beautifully enunciated without apparent effort. It turned out that Tom was both a film actor and a voice actor. No doubt, you have heard his narrations of major documentaries. Now, his career—his life—hung in the balance.

 

Although none of them knew what ailed him, Tom’s clueless coterie of specialists had told him to exercise, to “shake it off,” to get outside in order to imbibe "fresh air."  

 

“Nooooooo…..” I said finally after I had heard Tom’s story of piteously ignorant doctors offering the worst advice imaginable. Leeches and blood-letting would have been less harmful. “No matter what anyone tells you, whether they are family members or doctors,” I said, feeling alarmed, “go to bed. Stay there. Do not move. Do nothing that requires exertion. Do it for six months, a year—whatever it takes. It is the best chance you have for recovery if you have ME.”

 

I added that he had two factors in his favor: he had caught the disease very early—again, assuming he had it, which I assured him was only a possibility—and he was male.

 

If indeed Tom had ME, he was already light years ahead of most victims. He had a chance to respond in the best way: lie down and stay down. In the inevitable chaos of onset, it's advice few ME sufferers are likely to hear from their doctors. In addition, I knew from years of anecdotes and personal observation, backed up by clinical experts I talked to, that men—with obvious exceptions—appeared to have a better chance of recovery than women no matter what they did. Why this seems to be so may have to do with stark metabolic differences between genders. Issues of host and terrain have yet to be worked out with myriad viral illnesses, but most chronic diseases are born by women and they are likely driven by viral infections even if they've been written off as "autoimmune." Why chronic diseases that afflict women are so poorly understood and under-researched likely can be blamed on gender bias throughout all of medicine, a phenomenon of centuries duration and akin to racism. Unfortunate men who get snared in the madness of these anti-science, prejudicial medical ideologies that inhibit research and rational thinking are collateral damage, innocent civilians in medicine's war on women.

 

I urged Tom to see Derek Enlander, an ME expert in Manhattan and a doctor I knew personally. Enlander was thrilled to encounter Tom in his clinic; it turned out the doctor was a passionate fan of a series of World War II documentaries Tom had narrated. After a few visits and multiple tests, Enlander diagnosed Tom with ME.

 

Over the course of Tom’s illness, his friendship with Chuck deepened considerably when, to our shock and despair, doctors diagnosed Chuck with a stage 4 glioblastoma. Eventually, the healthiest man I had ever known was walking with a cane, joining Tom, who also required a cane by then, on short walks. Indeed, Chuck's brain cancer seemed to deliver him to a nadir I had hoped he would never know. In time, despite his height of 6 feet 3 inches, Chuck could walk no faster than I could walk and for the first time in three decades the two of us seemed to have reached equivalent disability. Tom and Chuck took short daily walks together, making their way slowly with their uniquely hand carved walking sticks. Then Chuck surpassed both me and Tom. I reluctantly arranged hospice care when Chuck's doctors told me they could do no more.

 

Our wise, compassionate friend, Charles Young, died in August of 2014. I’ve been diminished and my world turned even smaller. But life offers unexpected gifts. Though I nearly missed it through my own rigidity and preconceptions, my friendship with Tom and his wife, Susan, seems rock solid, fueled not only by our shared ME trauma and our love for Chuck, but by gratitude on both sides, as well.

 

Tom’s story of falling ill and his recovery is a Homeric saga that begins with his idyllic 1960s childhood in South St. Paul, a suburb of St. Paul, Minnesota and concludes in Manhattan, with a temporary detour out west. It’s a story worth knowing, one I’ve always wanted to tell. Along his bumpy way, Tom became a 19-year-old radio DJ and local celebrity, an actor who played opposite Woody Allen in two comedies—in each case, he was cast (against type) as a cop—and ultimately, in his 50s, a prominent voice actor.

 

ME changed everything for Tom in a matter of hours.

 

Part one of my edited account of his personal history and his onset and recovery with ME appears below. Tom and I undertook two interviews lasting, cumulatively, five and one-half hours. His story had particular poignancy for many reasons, not the least of which is that, like me, Tom’s formative years were spent in the Twin Cities of Minnesota and possibly even because our first cars were Corvairs, the Chevrolet automobile Ralph Nader famously dubbed, “Unsafe at Any Speed.” Somehow, we both survived our Corvairs—barely—to face a consumer threat Ralph Nader could never have foreseen.

 

 

“I grew up in a lower middle-class family, a working-class family, in South St. Paul. It’s a big stockyards town—it was one of the largest for several years. As a boy, I used to fish on nearby White Bear Lake,” Tom begins. “I had a wonderful 1950's-1960's childhood. I had three brothers and a sister, great neighbors and a bunch of great friends. I remember my sister had her own little room and the four of us boys had the entire top floor---we shared two beds in one room. It was kind of a nice little mess. I really enjoyed it.

“We never had money for vacations but we would always go camping.  There were gangs of kids in other families and we would go together. I realized early—by the time I was twelve or thirteen—that I wanted to do and see other things, but I wasn’t sure how that was going to pan out.

“They were building the 494 freeway, the Interstate, through our little town where there had been a two-lane highway. I used to go up to a bridge that crossed the construction and I would watch the guys building that road. I would sit for hours and think—and dream about—What if I got on one of those roads and just went away?

“At sixteen, I started hitch hiking. From that point on, especially once I graduated from high school, I started hitch hiking around the country. That was sort of how my life started.

“I went down to Chicago, which was a massive eye-opener for me. But I was not only traveling the roads. I was doing solo wilderness trips in Northern Minnesota. On my first solo trip into the wilderness, I hitched up north to Duluth, then past Two Harbors [a small town on the Lake Superior shoreline]. I hiked up the Caribou River alone and just camped by myself.

“Going to college wasn’t a part of our family history. The sense was, if you’re going to do it, you’re going to have to pay for it yourself.

“Everyone kept saying ‘You should get in to broadcasting.’

After training at the Brown Institute in Minneapolis, Tom was hired as a disc jockey in 1974 by a rock and roll station in Jackson, Michigan—a small town near the University of Michigan.

“There was a lot of great music then. I was a nineteen-year-old with a seven to midnight show. I had a sort of celebrity thing going on in town. But I found that within eight to nine months I just was bored senseless playing music in a tiny little booth.

“I thought, maybe it would be interesting to try acting. Maybe it’s time to go out west and really get some training.  I auditioned for the American Academy of Dramatic arts in Los Angeles. About five weeks later, I received a letter of acceptance. I got to LA in advance to find a place to live and get a job. I paid $100 a month for a room near Hollywood and Vine. It was a nightmare. Gun shots, cockroaches, mice—people screaming, sirens. I thought how am I going to manage? Study and work and live in this place? I told the school I needed to take a leave.

“I drove through Salt Lake City as I was returning to Minnesota and loved it. I got a job in an office supply company and stayed for nearly two years doing local theater. There was an open casting call for a University of Utah production of Oedipus the King. I went after work still wearing my construction belt. I had brought nothing to read so I read with another actor. Two days later, they offered me the role of Oedipus. I played the king for about three weeks—we performed it at the University of Utah on the big pillared steps there.

“I thought then, if you’re really serious, if you’re going to do this, then go to New York and get the best training you can find.

“A number of years had passed and I hadn’t gotten any closer to what I wanted to do. I had three hundred dollars saved. I thought, 'If I don’t do this now, I’ll never do it.

“I landed at LaGuardia airport on the thirteenth of March, 1984. I had made a reservation for a room for one night. I had no job, no place to go, I didn’t know anyone. The cab ride to Times Square cost almost forty dollars which shocked me back then. I then had two-hundred and sixty bucks. The hotel had no record of my reservation. They gave me a room with a broken window for $40. It held a bed with a ratty mattress with cockroaches. I said, Okay, I’ll take it!

Shortly after, Tom began sharing an apartment with another actor who lived on 145th Street in Harlem. On a frigid, snowy evening in New York, his second day in the city, Tom carried his possessions, packed into two large suitcases, northward along Broadway, walking one-hundred and three blocks from 42nd Street to 145th Street. He found a job as a bar tender at a “very nasty rough bar” near the Port Authority bus terminal. The Port Authority was on the outer-edge of the then-notorious Manhattan neighborhood known as Hell's Kitchen.

Eventually, Tom was earning enough money to rent his own quarters, which turned out to be a room in a Single Room Occupancy (SRO) hotel on the Upper West Side. "SROs," crumbling, former hotels, were famously riddled with drug addicts, criminals and the mentally ill in the recession-era New York of the Seventies and well into the Eighties. They were the subject of much hand wringing among city officials before they were ultimately shut down as the 1980s drew to a close. I did an assignment on SROs as a young journalist. Beginning in the 1990's, they were rehabilitated and returned to their original function as commercial hotels.

Tom’s rent was $210 a month.

“I lived almost two years in that little room and there were a lot of really crazy people there. I bought multiple locks for my door. I installed at least three different deadbolts.”

After a shooting and a stabbing at his first bar tending job, he left for a safer bar tending job at Marvin Gardens at 84th and Broadway, hardly the gentrified neighborhood it was to become but a world away from Hell's Kitchen. The restaurant was a popular hang out for Upper West Siders from the 1970's to the 1990's. Eventually, Tom moved from the SRO and shared an apartment with two others. Then he met Susan, his wife-to-be. The couple moved into my friend Chuck’s building twenty-seven years ago.

In his early thirties, Tom entered The New Actor’s Workshop, a two-year program. Founded by film director Mike Nichols, the school’s first year of operation was 1988. Tom was one among just thirty-three students in that first class.

In time, with an assist from Mike Nichols, Tom met casting director Juliette Taylor, who routinely cast all of Woody Allen’s films. She cast Tom in Allen's movie Shadows and Fog in the role of a police chief. Not having seen the film yet, Tom encouraged his family and friends to see it—innocent of the fact that all but one of the four scenes he had shot with Allen had been cut from the film. It’s an anecdote that in Tom’s retelling is somehow more side-splitting than heart-rending. Ten years later, Allen had not forgotten Tom and asked for him again, this time to play yet another cop role in the Curse of the Jade Scorpion. That time, his entire performance was cut.

In spite of such setbacks, Tom believed he was on his way to success in the career he had dreamed of for years.

“I remember walking home after my first shoot, which took place on the Upper West Side. I was thinking ‘This is the greatest thing. I live in New York, I walk to my job as an actor and I walk home again.' The dream didn’t last long, nothing came of those roles, and everything sort of came apart after that! But--I had these wonderful experiences.

“I continued to act in off-off Broadway plays and in regional theater in Portland, Maine, but—I was really struggling.”

Tom also continued to tend bar at Marvin Gardens. One evening, a regular asked him if he did voice-overs.

“I didn’t know that was something you could make a living doing. I told him, ‘I’m not sure what you’re talking about.’”

“We’re doing a corporate video for Tiffany’s. You have a really nice voice,” the man responded. “I would like to use it.”

The first narration went so well, Tom soon was doing voice overs for the corporate videos of other entrepreneurial giants like Elizabeth Arden. By the early 1990's, he was well launched on his voice acting career, eventually recording the narrations for National Geographic documentaries and the History Channel’s movies about World War II, as well as voice overs for television commercials.

“Nobody in my family had ever worked at anything they liked to do. They were always working at jobs they hated. After all my running around and all my misadventures, I had finally latched on to something that I really enjoyed. It took a while, but I developed a successful career. I got better as time went on. Eventually I was able to make a middle class living in New York City.”

Becoming an in-demand voice actor hardly deflated Tom’s lifelong attachment to the wilderness, nor his passion for keeping fit. In his thirties, he had earned a black belt in karate. At fifty-seven, in the fall of 2011, Tom made it his goal to hike the entire 2,190-mile length of the Appalachian Trail from Georgia to northern Maine before he turned sixty. He knew he would need to train. He began by hiking through New York’s two and one-half mile-long Central Park.

“I started with two miles, then four miles. And I carried a forty-pound pack. Soon, I was hiking about six to ten miles a day with a forty-pound pack on my back through Central Park every day.”

Tom’s always robust health was intact except for a nagging uncertainty about his PSA (prostate specific antigen) levels, a potential blood marker for prostate cancer. A doctor discovered his PSA was elevated. There is no definitive “normal” for men and the levels typically rise with age. The doctor suggested antibiotic treatment for a month.  Six weeks later, the doctor discovered Tom was positive for Lyme. His doctor prescribed another lengthy round of antibiotics. The Lyme was cured with treatment, but Tom’s PSA level was still rising. He took more antibiotics.

Nevertheless,Tom was in good spirits.

“By the spring and summer of 2012 I was hiking in the park, I was strong and I felt really good. I was also quite busy with voice work, doing a lot of narration, and I had some contracts to do commercials, too. I decided to go to Minnesota in early September to see my family. We went to the Minnesota State Fair and I went straight to the midway to get on the rides. I was determined to relive my childhood—but there is no way a fifty-seven year old man should be allowed near those rides. One was called the Human Cyclone. It was like a centrifuge. Afterward, I felt like my DNA had been rearranged. I was disoriented.

“After a couple of days of nausea, I felt good and we went up to Lake Superior to kayak on the lake.”

Another boyhood pleasure revived.

                                                                                                                 ***

Tom’s hard-won career as a voice actor was torn away in the space of hours one afternoon after he returned from Minnesota in September. With Susan, he drove to rural Connecticut on a Saturday to build a back-up generator system for his wife’s elderly parents.

“I wasn’t feeling well on the way up,” he remembers. “It’s only an hour ride. I thought, it’s just a bug. But as the day went on, I got progressively ill. I thought, Okay, maybe I’m coming down with the flu. But by 4 p.m., Susan said, ‘You don’t look well at all.’  I loaded up my tools and left for New York. I remember getting on the parkway and heading south, but I don’t remember the ride itself. I do remember getting home. By the time I got into the apartment, I was having hot and cold flashes, sweats, and tremendous aches pounding my body.

“I decided to take a hot shower, but as soon as I turned the water on, it was as if I was being stabbed with thousands of needles. I screamed and jumped out of the shower. I couldn’t even towel myself off--it was too painful.

“I was having a hard time making simple decisions. I was still having these wild swings of hot and cold and thought, Okay, I’ve got a serious fever, maybe I should call 9-1-1. Eventually, before I could do that, I just pulled a bunch of blankets over me and passed out on the bed. I came to a half hour later and I was soaked, had a raging fever and felt ice cold. And—piercing pain, with violent electric shocks, all over my body. The pain knocked me out again. I fell back on the bed and lost consciousness. Then the pain woke me up again. My body was shaking.

“By two a.m., I knew I needed to see a doctor as soon as possible. I was able to change the bed sheets and take a shower, but I felt as if I had tried to climb Mt. Everest. I was stunned. I thought, ‘I have zero energy here!’ I laid down again, supremely exhausted and once again passed out.”

“When Susan arrived the next day, she was horrified. She said, ‘Oh my God, what’s happened to you?' She wanted to take me to the hospital, but my doctor said over the phone, 'I’m not sure what this is but I’ll see you first thing Monday morning.'

“It was a rough Sunday. I felt as if I was being electrocuted—powerful shocks in my body that would roll right on through my body and then sometimes stab me and then contract my muscles into this indescribable painful cramping. By Sunday night, I was about 24 hours into this and it shifted from this horrible electrical cramping to a feeling of gnawing, biting pain as if I was being eaten from the inside out.

“On Monday, my GP said, ‘Obviously something is wrong with your neurological system.’ He thought possibly I had fibromyalgia because of the pain. I didn’t know what fibromyalgia was. I had done some commercials about drugs for it but I didn’t really know what it was.

“A neurologist put me through a series of tests. He was immeasurably disturbed by how much pain I was having during the tests, but said my neurological system was ‘Fine.’ He said I didn’t have damaged neuropathways because, he said, ‘You’re still feeling all these things.’

“During that first week, I kept having this gnawing, biting pain that felt intolerable. Also, I could hear people asking me questions, but I couldn’t process what they were saying. And I couldn’t feel my feet touch the ground. Walking is like a controlled fall, but there was some disconnect between my brain and my musculature. And sometimes my legs would just kick out on their own like a marionette.

“On top of everything there was this supreme exhaustion that I couldn’t understand. My body didn’t have the energy to do the most simple functions of living.

“I was still trying to work during this first week. I had just contracted to do six narrations for NBC at 30 Rock. I had to get a cab from the subway exit to go two blocks to the building.

“I wasn’t sure how I was going to get through the hour. I was terrified. I didn’t want anyone to know I was sick. I knew if word got out I would probably lose the jobs I had contracted for. I thought, ‘Let me just use the tools I’ve developed in this craft to get through these sessions.’ I tried to put on the best performance I was capable of so no one would know the pain I was in or the problems I was having coordinating my legs.

“Fortunately, I was in a booth where the engineers couldn’t see me. But I was looking at these paragraphs on paper and I was having trouble understanding what they were. I had severe cognitive impairment. I heard the engineer say, ‘Okay Tom, whenever you’re ready.’ I couldn’t remember having read the first paragraph. They stopped me after a page and said, ‘Tom—are you okay?’ I told them my dog was sick and I had been up all night.

“They said, ‘Let’s give it another pass.’ Usually, I could complete a script in eighty minutes or less. After two hours, the producer came in and said, ‘This is going to work for us but obviously you have to go home and get some rest.’ I apologized profusely but I didn’t want to tell them what was happening to me. I had a contract to do five more scripts.

“I exited 30 Rock, then just leaned against the building. I felt as though I was dying. I was so completely obliterated emotionally, physically mentally—I wasn’t even sure how to get home. I called Susan, who told me to get a cab. Soon, I collapsed into my bed and started crying. Two weeks before, I had been training to hike the Appalachian Trail and I was feeling great! Now I was thinking, What is happening to me?”

 

End of Part One

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