Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
Writing about someone with chronic fatigue syndrome (ME/CFS) who dies is always tragic – tragic because of what might have been, tragic to see a once productive, healthy human brought down so low; tragic because of awful circumstances that inevitably occur. In John Falk’s case the tragedy, to my mind, is amplified a bit because of the extraordinary person he was and the extraordinary future he seemed to have ahead of him.
I didn’t know John all that well – we talked a few times and/or communicated via email a couple times a year, but when we did there was something different about him. John seemed to me to be a New Yorker to a tee; he was funny, smart, profane and charismatic. I liked him immediately. Even in his illness he had a vitality I found totally engaging. He was someone I wanted to know better.
Before the age of 12 John Falk lived within the bosom of an extended, close Irish family. He was happy and popular – and totally unprepared for the depression – the “tornado” that carried him and deposited him in another world one night. John fought that depression – despite the fact that depression ran in his family, he fought the idea he even had depression – and made it through school and into college.
It was as if some demon stole into my room that night and chained me to an iron ball of metaphysical doubt. Overnight a wall had sprung up between my world and the carefree one it seemed everyone else lived in. From No Zoloft, No Peace in Esquire
It’s hard to describe what complete hopelessness feels like because ultimately it’s a perfect void, a state of nothing…Reason doesn’t apply, logic is useless, and faith is something for fools….For whatever reason, I couldn’t lick a nanosecond of pleasure from living, and now even the pain was gone…” From Hello to All That: Zoloft, War and Peace
Despite his less than stellar high school grades, John talked his way into getting admitted into the University of Vermont, After a horrible start at college, he pulled himself together, made the Dean’s list three times, and scored internships with a couple of Senators. Even in the throes of depression, he was smart, popular and funny.
He was also stubborn and willful. It took him almost ten years to see a psychiatrist – who immediately diagnosed him as a classic case of unipolar depression. After Prozac didn’t work, the Landmark Forum (suggested by his psychiatrist) worked for about a year, but then John was back in a near suicidal depression.
John combatted that detachment associated with his depression in many different ways – by taking risks (stealing, breaking into buildings, stowing away on a cruise liner, getting into fights), exercise or plunging into his school work. He graduated from college a popular, well-liked mess searching for release, for the way out – for the miracle that would rouse him from the isolation, the “meat-locker-cold existence” he was encased in.
Plunging into a different country didn’t work. He knew from the moment he stepped off the plane that Germany was not the answer. He fought the depression during Oktoberfest by getting drunk and cruising the crowd looking for fights. The Turks were his favorite target:
“When I wanted that special rush, I would saunter over to the roasted chicken booth, openly start gnawing on a leg without paying, and wait while some pissed-off Bavarian summoned the Turkish security guards.”
The fight that usually ensued – 7 Turks to one John – was, as John put it, “not exactly a recognized form of therapy, but at least” it took his mind off his troubles.
Trying to find something that would snap him out of it, he enrolled in graduate school, where after a couple of miserable semesters, Zoloft appeared and his life changed. John was no longer on the outside looking in.
Eager to get on, he wasted no time at all. Three months later, without qualification, experience or contacts, he was a war correspondent in the middle of hottest war on the planet – the genocidal conflict we now call the Bosnian war.
Getting to the war was a battle in itself which demonstrated the kind of commitment John could order up. After 25 local news outlets, all the big regional newspapers and all but one of the radio stations passed on sending a young kid with no experience into the kill-zone known as Kosovo, John improvised.
Telling the last radio station on his list that he was already accredited, and simply needed a letter so that he could do radio work as well, John got the letter he needed.
When his school psychiatrist refused to give him a year’s supply of Zoloft, John improvised again, seeking out a friend married to a psychiatrist who, succumbing to John’s charms, gave him a year’s supply of samples. At the age of 24 John was a self-made war correspondent, tailing a notorious and feared anti-sniper (a sniper who hunts snipers) in the depths of the Bosnian war. He had no idea what he was doing but that was fine, in fact that was probably part of the game – John loved the improvisation. In Bosnia he finally met his own kind – fellow journalists – restless spirits who’d left a life of comfort to thrust themselves into an edgier lifestyle.
In the beginning, John was so inept that he was taken for a spy pretending to be a journalist. He was saved when he accidentally set the crotch of his pants on fire during what turned out to be his moment of truth: unbeknownst to him he was being interviewed to determine if he should be killed for spying. (They figured no spy would ever set his own pants on fire.)
The deeper story, though, was how John ended up becoming part of his prospective killer’s family; his “own son” the patriarch said. He picked up one mentor, then another and then, in one of the scoops of the war – got invited to tag along with an anti-sniper so feared that he was called the “ghost” by the other side. Vlado or Utashe as he was known, had, without any special training, killed dozens of Serbian snipers over the years and managed to survive. Quiet and intense, Vlado the sniper ended up being one of John’s good friends.
“very lean and angular, weather-worn…he looked to me like an old gunfighter out of central casting, the kind of wiry bad-ass who would push through the swinging doors into a saloon and the whole place would go quiet…He was more distant seeming than anyone I had ever met before….He looked at me as if I was nothing.”
Living on the furthest edge of one of the scariest places in the world was exactly where John wanted to be:
“It was up with the snipers in their perches that I was certain I would find the greatest drama, the craziest shit, the razor’s edge of the war. ..Part of me, I suppose, was also attracted to the intensity of it….I had come all this way…..I saw no reason I shouldn’t take that final step into the darkest part of the war…” From “Hello to All That”
But here’s the thing: by the time John was done with Vlado and vice versa, each had opened up to the other. Vlado wasn’t a cartoon character, he was a passionate man doing a dirty job trying to protect his loving family. At one point Vlado told John that after taking down the most dangerous sniper of all he’d learned he had been Vlado’s former best friend.
In the most amazing story of the book, though. John improvised, pulled strings, enrolled helpers, and through his amazing mother’s assistance, somehow managed the impossible – getting his Bosnian “fathers” son, daughter and a friend out of the war zone and into the U.S. where they still live today.
John came back from Bosnia a new man. He enrolled and even dug law school, which he called “a three-year sleepaway camp for twenty-somethings”, passed the bar exam, did law for a while and then got back into his true love – writing. Rather quickly, the accolades piled up. John won a Peabody award, two of his stories were made into films, and he sold the rights to a movie for his memoir.
I’ve read his 2005 memoir – “Hello to All That: A Memoir of Zoloft, War and Peace” twice, the second time last week in two days. it’s a powerful book.
At the end of that 2005 memoir, John surveys a party that’s been thrown for him. It’s a wonderful and terribly poignant setting given what was to follow. John ruminated over the fact that he’d escaped the demon of depression (by now it’s just a distant memory) and what a change that had made. The venue was packed, his friends had traveled from all over – some from outside of the country – to be there. He was successful and happy, and his future was bright.
Not long afterwards John met and married his soul-mate, a similarly adventurous Mara (he told her she “was like him in a hot-chick suit”). Both he and Mara knew immediately that this was it and in true John and Mara fashion they took their relationship on the road. They tested it with three adventures: John had to endure Mara’s Ashram in India, Mara somehow had to stomach John’s mixed martial arts match in Brazil, and then they went on a ski trip in a war zone. Their trials passed, they married.
Not long afterwards, John’s appendix burst on a 13-hour flight from India to New York. Dangerously septic by the time the plan landed, John underwent surgery and was put under massive amounts of antibiotics. Recovery was slow and then, while Mara was chasing tornados for a TV channel, John got the flu – the flu that so many people with chronic fatigue syndrome (ME/CFS) are familiar with – that he would never recover from. He saw ten specialists before he was diagnosed with ME/CFS.
Like many people in the early stages of ME/CFS, the adventure journalist spent most of his day sleeping. Disoriented, the former globe-trotter had trouble getting around New York. When he got where he was going he invariably forgot where he parked his car. Finally, he broke the news to his editor – he couldn’t write anymore; in fact, the Peabody award-winning journalist often couldn’t even read anymore.
John was back in the soup with another health problem, but this time it was different. Depression had a name, specialists, and gobs of federal research funding. ME/CFS hardly had a name to itself (it goes by different names in different countries), got almost no funding and the self-made experts were few and far between. Plus it was saddled with this crappy name. The writer in John must have appreciated the bitter irony of being laid flat by a disease that went by the namby-pamby name of chronic fatigue syndrome (ME/CFS).
ME/CFS turned out to be a different gig entirely. As bad as depression was, John managed to get good grades, pass for normal in college, go for ten mile runs, stowaway on a cruise-liner, fly to Germany, muck it with the Turks, etc., while depressed. Yes, he was miserable, but he was mostly functional.
With ME/CFS he was miserable and non-functional. Like just about everyone with this puzzling disease, ME/CFS knocked charismatic, fearless John Falk down in every way possible – physically, mentally and in the end probably emotionally.
He had one year of success on Dr. Teitelbaum’s SHINE protocol and then relapsed again, getting much sicker. He spent the last seven years of his life in his basement. With his nervous system in shambles, John had to be protected from stimuli, could read only intermittently, and could rarely play with his kids. It was an astonishing fall for the adventure seeker who’d dared to go where few others would, and who found sustenance by plunging himself into the dark and untrammeled spots of the world.
Neither John nor Mara gave up easily. They spent hundreds of thousands of dollars trying to get John better. Diets, dozens of supplements, many different drugs, ME/CFS specialists, infrared saunas, craniosacral therapy, massage, reflexology, acupuncture, meditation, etc. – John left no stone unturned in his effort to get well.
The last six months of John’s life were misery. Stuck in bed, he developed sores all over his body. Xyrem could help him sleep but at the cost of his heart racing (150 beats/minute) even when lying down. The only real relief he got – the only time his brain would temporarily function – was after dunking himself in ice drenched bathwater. (His Omega-wave indicated his parasympathetic nervous system functioning would shoot up – for a short time.) Too sick to leave the house much, John’s ME/CFS doctor cut him off because of too many missed appointments.
Emotionally John changed also; his resilience shot, John’s formerly cutting but funny remarks became more and more simply cutting, and he taxed those around him with angry outbursts at times. His refusal to see a therapist on the grounds that he had ME/CFS, not a mental illness, was understandable but probably short-sighted . The years living in the basement, the poor sleep, and his increasingly fragile physical condition would have taxed anyone beyond endurance.
At some point, apparently feeling he had nothing to lose or perhaps nowhere else to go, his situation increasingly fragile, John upped his Klonopin dosage dramatically. The results – hallucinations and suicidal thoughts and a complete collapse – were devastating. John was taken to a temporary mental ward where the doctors were astonished at the number of drugs he was taking (8 klonopin a night, Xyrem, Famvir, antibiotics, anti-fungals, HCG injections, thyroid, anti-depressants, and many supplements.)
The doctors at the unit agreed he had ME/CFS but asserted it wasn’t causing his problems because they felt “ME/CFS patients can still get around and work”. One doctor even suggested that John’s ceaseless efforts at getting well indicated he had a psychiatric illness – something John, not surprisingly, fiercely rejected. John’s hallucinations stopped when he was off the Klonopin. Weak and disoriented, he was, unfortunately, transferred out of the hospital before a room could be found at a care center.
About three weeks later John Falk killed himself, leaving behind his wife, Mara and two daughters and so many questions. Everyone John knew, myself included, has looked back with anguish at what happened, wondering what we could have done to prevent it. If we’d known what was to take place, we would have moved mountains to prevent it, but the bitter truth is that we simply didn’t know.
The real culprit in John’s death is a medical system that largely ignored his plight and the plight of 1-2 million other Americans with his illness. John was correct when he stated at the end of “Hello to All That” that his life was saved by the creation of Zoloft, but that statement misses an important point. John’s life was saved because our medical system took depression seriously enough to produce an effective treatment which restored a chemical imbalance in John’s brain. (John’s recovery was so startling that he became known as “patient X” as an example of how effective antidepressants can be without therapy).
That’s not true for chronic fatigue syndrome. There are no drugs in the pipeline; no drug trials underway in the U.S. ME/CFS funding – always at the bottom of the barrel at the National Institutes of Health – has improved recently, but is still nowhere sufficient to understand this disease. There are no validated doctor training courses, and the illness is rarely and then only briefly studied in medical school. In short, the infrastructure which resulted in Zoloft is simply missing.
Despite the disease’s huge costs to families and to our nation (estimated at $12-20 billion/year), our medical system mostly leaves people like John on their own struggling for answers, with a bewildering variety of untested and usually ineffective treatments, and ultimately little hope.
Stories like John’s of lives turned upside down and families shredded, are, unfortunately, all too familiar. (This is the third memorial I’ve written.) It’s seems all the more tragic in John’s case because of his huge passion for life, and the wife and two small children he leaves behind.
The world needs more healthy John Falks. His family and we should have had a healthy John Falk to know, to joke and spar with, and to love for decades. The fact that we won’t have that is tragic. The fact that this bright, passionate man had to endure so many trials and tribulations is simply too painful to contemplate.Hopefully John’s death will spur others to action.
John Stories – Being the colorful guy John was, he left many stories behind. Friends of John are collecting some of those stories. If you’d like to contribute your John story, please e-mail me at firstname.lastname@example.org
Mara has requested that in lieu of flowers donations be sent to Health Rising (see donation button on the right.) A service to celebrate John’s life is being held on Saturday, September 9, 2017 from 2:30 PM to 5:30 PM at at John’s Uncle’s bar and restaurant, Leo’s Midway, in Garden City. NY. (leosmidwaygardencity.com. (516) 742-0574
Unfortunately much of John’s work is not available online anymore including his hilarious “Love Tests” . Read No Zoloft No Peace, Chronic Fatigue Syndrome and Psychotherapy, An Interview with John Falk.
Find out more about chronic fatigue syndrome and how to support it on Health Rising.
About the Author:
Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.