One Man’s Path to Recovery—Not a Straight Line

Hillary Johnson

     On the morning of March 15th, 2012, Tom Greer woke up in the stroke ward of Mt. Sinai Hospital in New York City, eighteen hours after experiencing a major stroke. Only months before he had contracted a severe, disabling case of ME.

     “I remember thinking, ‘I made it through the night and it’s another day. I thought ‘It hasn’t killed me—not yet. Let’s see what happens.’

     “My goal was to say ‘good morning’ or ‘I love you’ to [Greer's wife] Susan when she came in the room. I did that. So, I began setting more goals. Stand up, take a few steps, say a few more words. As the day went on, I was able to accomplish those things. I thought, ‘Okay, this is how it’s going to work. I’m going to set goals—baby steps—and try to achieve them.’ I had read about the brain’s ability to re-grow neurons and the neuroplasticity of the brain…By the fourth day, I could speak in somewhat complete sentences—very simple sentences, in monosyllables, simple structures.

     “I remember a neurologist came in that morning with a bunch of interns—they packed the room. Word had gotten out that someone who did narrations for National Geographic was in the stroke ward. My improvement was surprising to the neuros, so they were all asking me questions. It was a real challenge. Afterward, I asked my neurologist when I could go home.”

     His doctor advised Greer that protocol dictated he be moved to a rehab clinic in the hospital where he would remain for two to four weeks. Surprised, Greer flatly refused.

     His neurologist argued with him, saying he would be denying himself part of an “essential process” of recovery.

     “I was very deliberate,” Greer remembers. “I said, ‘I’m going to go home as soon as possible, preferably today. I can stand up and walk with help.’ I was like Tim Conway on the old Carol Burnett show shuffling across the room inch by inch. But, to me, that was success.”

     Greer and Susan went home by cab. During the ride, he put his hands over his face to block out the confusion and noise of Manhattan.

     “My brain couldn’t process all the visual-sensory information that New York assaults us with every day.”

I thought, ‘I have to literally pull out of life. My bedroom, my apartment, my walk to the mailbox in the lobby—this is going to be my life.’ I pulled back from everything. I got extremely adamant about ‘me time.’ I felt I had to be as selfish as I needed to be.

     It took thirty minutes for Greer, with the aid of his wife and a tall walking stick, to shuffle one Manhattan block to the door of his apartment building.

     Settled comfortably at home, Greer recalled, “I had made up my mind. I was going to recover, I was going to speak again, I was going to do voice-overs again, I was going to walk normally again. I was going to finish my radiation and then I was going to treat my ME and get that behind me. I had a sense of, ‘I’m home, I’m alive, I’m actually on this path.’”

     With time to ponder the events of the past months, Greer regretted his struggle to finish his work assignments two months earlier. It had been too much, he had been too ill. Had that effort led to his stroke? The answer was elusive, but now he committed himself to living within the confines of the limits imposed by ME.

     “I thought, ‘I have to literally pull out of life. My bedroom, my apartment, my walk to the mailbox in the lobby—this is going to be my life.’ I pulled back from everything. I got extremely adamant about ‘me time.’ I felt I had to be as selfish as I needed to be.

     “It was extremely hard on the marriage. Fortunately, Susan knew me as a human being and as a man and she was really shocked by this incomprehensible change. I think she knew I was going to do whatever I had to do to get well so we could have a normal life at some point, even if it was years down the road. I basically said ‘No’ to everything. She  essentially became a single woman at that point, and for a long time.

     "The consciousness most people have (confronting severe illness) is 'I've got to beat this thing!' Which means using up all your energy to beat it. But I don't think some things can be beaten. It wasn't until I gave up fighting that I had a sense of relief. I realized maybe there's another way to do this. To back up and pull away and let my body's own healing power deal with what's happening. I think now that the feeling I had originally--that I had to fight it--I think that hurt me.

     “I couldn’t prove it, but I also had a sense that the stroke was very much connected to what was happening to me. I thought, ‘Wow—this is probably what happens to people—they’ll have a heart attack or a stroke, and then it masks what happened to them with ME.’”

     While Greer’s enforced rest was helping him make headway with his stroke symptoms, he still had to undergo thirty-five more sessions of daily radiation treatment for his prostrate cancer. The journeys to and from the hospital were grueling, as were the treatments. They ended, at last, on May 13 of 2013.

I realized I'm not a doctor or a chemist. I'm just a guy with a bad disease--is there a way to get through this?

     Afterward, Greer began a modest walking program with our mutual friend Chuck, who was living with a malignant brain tumor and whose limitations were remarkably akin to symptoms of ME. The two men set small goals for themselves—walking a block on one day, then, over time, walking to Central Park, a two-block journey. Four times over the summer and into the fall, they made it all the way into the park to the reservoir, a lake-like body of water surrounded by an early 19th century restored wrought iron fence and a one and one/half mile dirt running path. There, they sat for an hour or two on one of the park benches nearby, watching an entertaining mix of dogs and a parade of runners sprinting and jogging around the trail.

     “By then, Chuck and I had started to diverge,” Greer said. “I began to improve. I realized I was making improvement with my speech and walking. I felt I was not in the extreme seriousness of the year before. I was in a different place.”

     “I began trying to diagram everything. After months and months, I had completed two white boards. I was putting down everything I could about methylation cycles and methylcobalamin and glutathione and everything I could think of that would cause cells to be unable to produce energy. I was just so innocent. The more I began to learn, the more freaked out and depressed I got.

     “I thought, ‘Crap—this is how I’m going to die—of ME toxicity.’ It was a very shattering thing. After several months I reached a turning point. I realized I’m not a doctor or a chemist. I’m having severe cognitive problems just trying to understand this stuff. I’m just a guy with a bad disease—is there a way to get through this? To actually recover?

     “Ultimately, I believed what had happened to me was so horrific that I needed to detoxify every aspect of my life—mentally, emotionally, even spiritually. I believed I had to stop all negativity--the stuff that makes me go postal. I quit reading everything on the Internet that drove me insane—corporations that were killing us, the climate, Cheney and Bush. I pulled back from all of that.”

     “I kept going back to what you had said about people who were properly diagnosed early on, within six months, having a chance to recover. I kept holding on to that. It was essentially my lifeline. Had I experienced this disease the way you and so many others had—gone years without a proper diagnosis—I don’t know if I could have continued on, I really don’t.”

                                                                                                   ***

     “I got into a practice of distracting myself from the horror of ME with things that brought me a sense of happiness. I was also taking immune boosters and hepapressin shots and supplements prescribed by [Dr. Derek] Enlander. And, I found that I was making progress.

     “I listened to Gregorian chants, classical music—any music that made me feel at peace. It took me away from a hellacious, dark, painful place. Sometimes—it lasted just four or five minutes at a time. Finally, I was getting thirty to forty minutes of relief a day. That felt phenomenal. Approaching my first-year anniversary of being struck down with ME, my pain levels were down to seven from an eleven or ten kill-yourself kind of pain. Sometimes the pain dropped from four to three. I was thinking—something is happening here!

     “Eventually, there was a quarter or third of each day when I felt a great reduction in pain and improvements in cognitive ability. I was reading more, speaking more. My process of speech therapy was to read children’s books out loud—Curious George, Cat in the Hat.”

Out of nowhere, I’m back to square one. I was severely depressed. I felt I had no more tools in my toolbox.

     Our mutual friend Chuck died of stage four glioblastoma at the end of August in 2014, leaving a swath of friends grieving and in states of disbelief, perhaps none more so than Greer and myself. We had survived, Chuck had not.

     Greer’s struggle continued without his walking companion. In the fall of 2014 his disciplined strategies seemed to be paying off. He dared hope he was on his way toward a full recovery.  

     “Then I had a serious relapse,” he said. “It was almost as if I was in the first days of onset but without the fever.

     “It shattered me. I thought, ‘Out of nowhere, I’m back to square one.’ I was severely depressed. I felt I had no more tools in my toolbox.

     “Eventually, I thought back to that first night in the stroke ward at Mt. Sinai when I watched the snowfall from my window. I thought, ‘Tom, you’re going to recover. However many years it takes.’ So, I started again.”

     Once more Greer began taking supplements and immune therapies dispensed by Enlander, aids he had earlier weaned himself off. He resumed mental relaxation exercises and added a new routine: he started watching old cartoons, Charlie Chaplin films, The Three Stooges, and any other entertainment that had made him and his brothers split their sides with laughter in their childhood.

     He began to feel improvement, but five to six weeks later, ME was back.

     Yet again, “It was severe,” Greer said.

Tom Greer's Methylation White Boards. His bleak conclusion, "Lack of methyl B-12 creates partial block of methylation cycle, causing vicious cycle of of glutathione depletion...becomes chronic causing complete methylation cycle dysfunction."
 In that time, I had twenty-four set backs.                                                                                   

     A pattern emerged. Over the next two and one-half years, Greer continued to weave back and forth between what he hoped was the beginning of a full recovery, interrupted by periods of ME that announced themselves with little warning.

     “In that time, I had twenty-four setbacks, and eighteen of them were severe, but I kept coming out of them. I would tell myself, ‘You can come back.’ And I would go back to those techniques I had used successfully to earn even a moment of relief.”

     On May 10th 2016, Greer woke up and lay in bed, stunned. For the first time since acquiring ME, he was entirely pain-free.

     “I was waiting for it to hit me—so I just lay there. An hour passed—no pain. I got up from bed. I had tears in my eyes. I thought, ‘Oh my god—I’m recovered from this thing!’”

     As he began to move around his apartment, the pain returned, but this time it was mild.

     By the end of June, Greer believed he had come out of the period of myriad setbacks and might be recovering from ME permanently. His voice was strong enough that he was able to engage in some light voice work for the first time in years.

     By mid-2016, four years after ME befell him, Greer no longer experienced even mild relapses. By year’s end, he was pain-free round the clock. He once more dared believe he had successfully vanquished what he called “…the damn virus that got me.”

     “I felt I had strengthened my immune system to the point that it could deal with this pathogen. I suspected it might be somewhere in the back of my brain but that I had built up enough immunity to deal with it. I thought—'I’m here.’”

     Still, complete certainty remained just out of reach.

     “In 2017, I had a major stressor in my life over a weekend. I won’t say what it was—it was very personal. But it became my twenty-fifth set back. I went back—not to square one--but very close. I thought, ‘Holy cow—I’ve got ME, I’m living with it, it got triggered and it reared its ugly head one more time’

     “That really woke me up. I didn’t feel doomed that I was living with a ticking time bomb, but I did feel the reality is that this thing, this virus, was still in me. And I’m just going to have to live the rest of my life knowing I can’t do the things I used to do. I also realized I have to be very careful about how I handle stressors because stress can send me to a really bad place.”

     Eventually, Greer recovered from his 25th relapse and again began an effort to find some semblance of normality--to recreate what he remembered of life before ME.

Anyone who gets this disease has to basically say goodbye to their old life,” Greer said. “It’s gone. You must say goodbye. You have to learn to live another life.

     His goal turned out to be slippery—always just out of reach.

     “I tried to slowly introduce exercise into my life and found that after four years of being extremely incapacitated and undergoing radiation, my body was an absolute wreck. The stroke had caused massive muscular, ligament and tendon problems,too, that made exercise hard.

     Just prior to falling ill, Greer had been training to hike the entire Appalachian trail by trekking six miles through Central Park with a heavy pack on his back every day. Things were different now.

     “I just began walking again. I set myself a goal of a mile a day—at whatever pace was comfortable.

     “I still can’t do heavy, physical exercise without having muscular fatigue,” he said, adding, “Of course, ME was never ‘fatigue.’ If I push myself now, I’ll have muscular fatigue for a day or more, so I pull back and walk half a mile, instead. I’m challenged by anything more than moderate movement. And if that’s the way it is for the next five years and maybe the rest of my life—I’m okay with that.”

     “But—,” Greer continued, “I still keep saying, ‘Can I try this?’ I tried swimming—I couldn’t do that. I can’t do any light body-weight lifting.”

     Nor could he handle Karate when he tried, though he had earned a black belt at 33.

     Greer has arrived, after a lengthy and mostly successful effort to vanquish ME, at a stark truth, one that raises questions about the meaning and definition of recovery as regards ME. For some people fortunate enough to evade disability, the answer may depend on one’s ability to accept—and leave unchallenged—whatever degree of health returns, even if it means what was previously accepted as one’s personal best must be reimagined.  

     “Anyone who gets this disease has to basically say goodbye to their old life,” Greer said. “It’s gone. You must say goodbye. You have to learn to live another life.”

                              ***                                                                                                                                                                         

     My conversation with Greer about his history with ME occurred in the autumn of 2019, seven years after his ME onset.

     As I reported earlier, as an adolescent and young man, Greer had frequently pursued solo hikes into the wilderness of northern Minnesota and often farther into Canada.

     “I would have these extraordinary experiences and it was always a wonderful, healing time for me.”

     Greer described a recurring dream that has arisen during the seven years of his illness. It clearly emanated from those formative experiences in the wilderness.The dream has continued to evolve in tandem with Greer’s up and down struggle with ME:

     “[In the dream] I’ve gone into the wilderness, a mountainous area. I’m a hundred miles in. A storm comes and I slip and fall into a ravine and break both my legs. I’m one-hundred miles away from any help and I need to crawl out.  I begin the process of crawling up the ravine toward what I think is civilization. I’ve had this dream three to four times a year, every year, and each time I get closer to civilization. In the dream now, I’m finally at the point where I’m walking out—slowly. My legs are healed, but they’re gnarled. I can see civilization, but it’s about ten miles out over the horizon.

     “And that’s how I feel. I’m not through this, but physically, I’m about seventy-five percent recovered. My voice—I’m now doing work that’s being broadcast nationally. I feel I’ve recovered fully in that area, I’ve surpassed and even improved. I’ve come so far, I want to say, ‘This is possible for some people.’”

This virus feeds on stress. It just loves stress.

     I ask Greer if was helpful or hurtful to his recovery process to know the history of the ME pandemic as recounted in my book Osler’s Web.

     “It was helpful in that I needed to know what was being done to suppress knowledge about ME—the pretense that it didn’t exist. It also enraged and horrified and sickened me. Particularly when those epidemiologists at CDC gave it the ‘CFS’ name. I can barely spit those words out. I refuse to use them. It isn’t a syndrome, it’s a disease. So, the political aspect of belittling and degrading such an obliterating, shattering human condition was so horrific it made me insane.

     “They condemned tens of thousands of people to a life of extreme torture and suffering. Even now—just bringing this up—makes my blood boil. Was it helpful to know that? Yeah. You’ve got people in positions of great power who are acting in extraordinarily demonic ways. So, as painful as it was, I needed to know the darkest of the dark, because then I knew what I was facing.

     “But I can see how it’s very hard for some people to face the reality of the darkness out there. And it’s still out there today.

     “And from the time I read your book, I knew that I was in a very dangerous, difficult and challenging place. I also believed that if I kept myself in a state of constant rage I was going to have an impossible time recovering.  Back in 2014 and 2015 when I was starting to get better, Dr. Enlander suggested I get on the Phoenix Rising site and talk to patients. He said, ‘You have this great voice, you need to be a national spokesman for this!’

     “I went on that site for a week and found it debilitating. I knew what these people were going through—the pain, the grief. But I also knew that if I kept myself in that place, the chances of me recovering were slim to none.

     “I needed to find moments of relief, of not being in crippling pain, whether it was mental, emotional or physical pain. I thought, ‘I can’t help these people. Not yet. Maybe I’ll recover from this and then I’ll have a story to tell.’

     “This virus feeds on stress. It just loves stress. I realized that if I got into all the shit that goes on with the politics of ME—I could not recover…We’ve both fought the battles. At a certain point, the generals must back down. I may never be close to being fully healed, but I deserve to have that chance.”

                                                                                                      ***

     Recently, I left a message for Greer to let him know I would soon publish the last portion of my story about him. He did not return my call for a few days, which was unusual. When he called, his tone was somber. Susan was on the line with him. I felt the kind of dread that inevitably precedes terrible news. Greer had crashed—badly. I knew 2019 had been full of stressful events for both of them. There had been unusual physical demands, too. And yet since our five-hour conversation in October about his ordeal and recovery, I had assumed he would be talking about ME in the past-tense going forward.

     Although Greer had pushed through 2019’s demands on him and remained intact, when the tasks ended in December, he found himself once more ensnared in that familiar excruciating pain that, as he described it, felt like electric shocks shooting through his entire body combined with unbearable muscle cramps. It was as if the past seven years had never happened, except that now he had so much more wisdom about what to do. And he is doing all he must.

                                                                                                     ***

     ME has a fiendish aspect to it unlike any disease I have encountered in life or in literature. Recovery is not only exceedingly rare, but appears to be a uniquely tenuous state, one in which the recovered patient is never certain they have been truly released from their former trauma. It’s hard to shake a concern that the monster is hiding behind the door or under the bed.

     I have faith that Greer will recover again, accumulating even more wisdom as he goes. That’s been his pattern. If anyone knows how tenuous recovery is, it is he. With every relapse he has learned more about how to prevent another.

     He is my lodestar for how to survive ME with grace, particularly his disciplined turning away from anger and strife, being “selfish” when necessary, recognizing he “deserves” to get better. I’m not sure I ever saw recovery quite that way: something I deserved. Recovery was something I desperately wanted—though I’m not implying my outlook made much difference as to outcome. I strive, albeit unsuccessfully, to be more like Greer, searching for the beauty in life when I’m able, especially given there isn’t much time left to me. Exactly half my life has been lost to ME, but I have learned from Greer, nevertheless. I wish I had known him when I fell ill, thirty-five years ago this month. And yet, were that so, I would have been unable to impart what I have learned along the way to him.

     For the moment, for many of us, maybe this is the best it gets: being able to tell our stories, to confide in people who speak the same obscure, unfathomable language of ME.

                                                                                          

 

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