Mark Pullinger was a promising young musician when Chronic Fatigue Syndrome struck. It turned his whole world upside down…
“You have a post-viral fatigue syndrome. Six months and you’ll be back to normal.” My GP seemed so reassuring.
He had a kind, affectionate face and a comforting smile that gave him the aura of being constantly amused. He said, “Right, Mark,” and, “Exactly,” a lot and bore an uncanny resemblance to the news presenter, Krishnan Guru-Murthy.
His room, the first on the left down a corridor adjacent to the waiting room, was peppered with the standard National Health Service doctors’ toys; a photo of his teenage daughter skiing, perhaps in the Alps, sat proudly on his desk. She seemed the picture of good health, which was encouraging.
I had made the familiar drive down to the surgery earlier that morning and was eager, if a little anxious, to hear the results of some tests taken a week before.
It was July and the record hot summer of 2003. I’d just finished my first year at a London music conservatoire. I was 19 and giddy with a youthful ambition, high on life. My days had been spent in classrooms amidst the swirling sounds of jazz’s legends - Miles Davis, John Coltrane; our task to decipher and absorb, from the records, as much as we could about the genre, one day hoping to make our own mark as musicians; my evenings, in London bars and jazz clubs with friends or someone I had recently started a relationship with. A career as a saxophonist was gaining momentum. It occurred to me that I had probably never been so content.
It had all started a month beforehand. Fraught with the anxieties that could only mean end-of-term concerts, I had started to feel run down. At first, it just seemed like a run-of-the-mill flu-like illness and I was able to carry on more or less as normal until, one morning, I woke up to find that I couldn’t move. I was awake and could wiggle my hands and toes, but the part of my brain responsible for getting up didn’t seem to be working.
The first thing I noticed was an overwhelming cloudiness in my brain. I couldn’t seem to process any thoughts or find any explanation for how I was feeling. I felt stoned or hung-over and yet I wasn’t. I wondered if I’d had a stroke or some kind of fit in my sleep. Having had a completely clean bill of health for over 10 years, it was baffling, if not frightening.
Six months later and it was clear the GP had been wrong; I was barely recognizable to myself. I was suffering from an exhaustion that, at best, left me too fatigued to spend more than an hour or less at college, and at worst, left me unable to cook or shop for myself, instead grounded in bed or glued to the sofa for days at a time.
The symptoms were varied and numerous. Swollen glands, brain fog, muscle weakness, shifting temperatures, fine tremor, difficulty concentrating, difficulty thinking; I could go on. The worst were the combined effects of a vertigo-like dizziness and an anxiety which I had never before experienced, nor felt I had any control over. I am not easily frightened; in the past I’d had two close-call motorbike accidents and barely blinked an eye, but with this at times I was convinced I might die; maybe the GP had missed an underlying heart condition, a brain tumour perhaps?
I went back to my doctor many times that summer. He said he’d found evidence of a viral infection but admitted there was little he could do to help. In a moment of candid and unnerving honesty, he said, “I wish I could make you better.” He went on, “In medicine there are things we know and things we know we don’t know. This is one of those things.”
After a referral to a neurologist, I was told largely the same thing, there was little to be done, no cure and few drug treatments but that with adequate rest, my prognosis for long-term recovery was good. My diagnosis was changed to Chronic Fatigue Syndrome (sometimes known as M.E.), a name that seemed laughably inadequate. Jazz pianist Keith Jarrett’s, “living-dead syndrome,” is perhaps closer to the mark. I was lucky in that, only months before, the World Health Organization had classified CFS as “A serious, multi-systemic, neurological disorder.”
So far, a GP and a neurologist. Next would be a psychotherapist. It seemed obvious that - suffering from something without easily identifiable organic markers, at least not to a GP - I would at some stage or another find myself face to face with a shrink; though it was perfectly clear to me that what I had was by no means imagined or ‘all in my head.’
This foray into the world of psycho-analysis had been arranged by my mother, who, one afternoon, after hearing me break down in tears over the phone (one of the very few times I have), had consulted with the Jewish side of the family over what could be done. It was no surprise, then, that later that day I would find myself on that most Jewish of institutions, the couch.
Leon was as immediately affable as he was intriguing. His face was etched with wrinkles, each, like a train line, the visible marker of a profound journey, an ‘examined’ life.
With a thick Jewish/New York accent, silvery, balding hair and a matching goatee beard, he reminded me instantly of Yoda from the Star Wars films. He was at least a thousand years old and, like Yoda, was full of delightful gems of lines, such as, “It’s difficult until it’s easy” and later, “Don’t be so xxxx ridiculous.” We were immediately friends. I was under no illusion that he could cure my illness, given its physiological underpinnings, but he would become, as is so necessary during such times, a listening Other.
After a few near collapsing incidents and six months of staggering in to college, anything to retain my old life, I took the decision to spend some time at my father’s flat in Surrey – somewhere I wouldn’t for the hills have ever imagined I would be living; I’d barely been living on my own for more than a year and a half.
It was, perhaps, a fitting place to go for convalescence. A slower pace of living, detached from the hustle and bustle, the polluted air, the deadlines of life in London. I’d intended it to be for a few weeks, some time-out for rest and regeneration, but it quickly turned into months and I was increasingly housebound.
After a year or so, I soon began to find myself inhabiting a different place, an unfamiliar way of living devoid of motion or doing. I was becoming a patient.
As neurologist Oliver Sacks observes, “I had to relinquish all the powers I normally command. I had to relinquish, above all, the sense and affect of activity. I had to allow – and this seemed horrible – the sense and feeling of passivity.”
It is a strange thing to be almost completely lacking in energy. We are not usually ever without it for more than a fleeting moment. And yet, I was beginning to see it as the process upon which all others depend, the basis for all motion, what gets us from A to B. Necessary to carry out any action, what gets us out of trouble, a derivative of strength.
To be without energy is to be motionless, unable to go from A to B, to carry out action, unable to get out of trouble, weakened. Perhaps it was this knowledge - an inbuilt reflex harking back to our hunter-gatherer days - that was so frightening. An animal in such a position would be in fear for its life, easy prey for a predator.
With most of my time now spent in bed or staggering outside for a few minutes a day, there was a lot of time to think, to take stock. My saxophone case was gathering dust, friends were beginning to drift away, my partner and I had grown apart. It would have been easy to slide into depression and I might have, were it not for a small body of work I was able to do in bed, thanks to the wonders of technology.
Immediately before becoming ill, I had been putting a band together, something all young jazz musicians do to start out. Frustrated at not being able to go ahead as planned, I’d suggested to one of them, a well-established Canadian guitarist, that I might be able to get him some dates for his own band. Nonchalantly, he sent me a few CDs in the post, and what started out as a gig here or there quickly turned into something more substantial. I had found a new role as a manager.
It was a vital life-line to the outside world, to my sense of self. It meant I was speaking to people every day, working towards something, and most importantly, it gave me a sense of purpose; I was still valuable and necessary. I was so caught up in the work, I sometimes almost forgot what was going on around me.
Aside from these brief bursts of activity, my focus was centered on doing whatever was possible for recovery. With few drug treatments available, the neurologist I’d seen had recommended a very carefully graded increase in the amount I could walk each day. It is a controversial subject to those with CFS, as the severely affected are often made much worse.
On first arriving in Epsom, I could manage 20 minutes or so, once reaching 50, though I was to suffer a relapse which would eventually bring my average down to 7 minutes.
Some doctors suggested resting before I was exhausted, stopping just short of the point where relapse was likely to occur. Easier said than done. As writer Dorothy Wall observes, “Sounds like a good idea. Have I done it even once? Make myself rest when I still have an ounce of energy? The new knowledge of the head doesn’t so easily dislodge the life-long, entrenched patterns of the body.” [From Dorothy Wall’s book, Encounters with the Invisible: Unseen Illness, Controversy, And Chronic Fatigue Syndrome.] http://www.amazon.com/gp/product/0870745042?ie=UTF8&tag=prohealth-20&linkCode=as2&camp=1789
It’s hard to pinpoint the moment when I realized the life I’d been trying for, the one I’d taken such pride in building, had given way to another, more reflective and acquiescent. A year and a half in, I had a brief glimpse of this when I had to give up my room in the house I’d been living in while at college. I had tried to keep it as long as possible so when the day finally came that I was better, I could make an easy transition back to normality.
It would be another two years later, still for the most part housebound, before I would start to accept the idea that this day might not come. The prognosis of full recovery for those in my shoes was less than 4 percent. My head was filled with questions: Would I ever feel entirely well again? Would I one day recover the strength needed to be a professional musician? Would I ever know again what it felt like to wake up with the freedom to do as I chose?
With each new day, the last barely distinguishable from the one before, time ceased to be of much significance other than a general sense I had of its passing. A Monday was no different than a weekend, March no different than April aside from the observable change of seasons. It had lost that guiding, quantifying function that serves us so dutifully in the land of the well.
I wondered, during all this, how I was perceived by my family, old friends and colleagues who hadn’t seen me for such a long time. What did they think had become of their friend, that familiar face in the corridors, that loud saxophonist they had worked with, their son, brother, cousin? I was too weak to manage a visit from more than a handful of family members every few months, friends barely at all. With them, I kept in touch through text messages, e-mail and the odd phone call - a disembodied voice. To most I now existed only as a series of rumours and assumptions.
It’s true what those with long-term illness say about really finding out who your friends are. While many were in touch for the first two years, few remained by three. This is not unusual. I understood many thought I was fine, a little under par but doing well as a manager, out there on the scene but not playing any more. I still receive invites to events, text messages like, “Mark! Long time no see, a drink is long overdue,” or even, “I think you just need a new pair of shoes don’t you?”
One, whose mother had been helped by hypnotherapy, had put around a rumour that it was all psychological. I started to hear from people less after that. Thanks to the neurological and cognitive symptoms affecting the brain (a brain scan would look not dissimilar to that of a stroke) and the detachment I was experiencing, I expect some of my own e-mails and messages might have supported this conclusion, though anyone who had phoned to see for themselves would have seen I was perfectly lucid. Still the chirpy, cheerful young man they had known.
This lack of human contact, of interaction and exchange, the loss of valued relationships, good friends, far surpassed the physical debility of the illness itself. There is something wonderfully cathartic about love in all its myriad forms, its ‘concern and affection’, and its potential for healing. Likewise, its obscurity, for malaise. “But O for the touch of a vanished hand,” as Tennyson said.
Even so removed from normality, I still had all the normal urges, desires and needs that we find on the outside. Romantic love was something I had long been searching for and it now took on an even more important role; hard, though, to go out with someone when ‘going out’ was precisely the problem.
Implausibly, I would fall for a friend or two, remotely; their bubbly, animated text messages and lively phone banter like a ray of sunshine in an often clouded sky. Though, thanks to the intensity with which I now lived, albeit temporarily, it would prove too much for these friends and I didn’t hear from them after that. I wonder if I will again. These are the real losses we feel from chronic illness. The loss of people who have been a part of our lives, no matter how great or small; who hadn’t died or emigrated to a foreign country, there had been no falling out.
Relief would come when I was given a brief window to foray back to normality, a good day, usually about once every six months. On these occasions I would make a frantic dash for a coffee in a nearby café or my local Starbucks. These moments were so rare they were often frightening. I could feel the energy pouring out of me like water out of a hose, sometimes having to abort before the coffee arrived. Still, these frothy encounters would provide such an unbridled joy I could feed off the experience for weeks later. I would lie recumbent in bed, replaying the sights, sounds and smells – flustered shoppers and animated businessmen, the whirring, clattering sounds of espresso machines and crockery, fragrant smells of caramel machiato and Danish pastries. At the time, it was a sensory overload to me. I wonder how many of us notice these things?
It’s getting on for three and a half years now, in the sleepy, leafy green lanes of Surrey; four since that uneventful day in the GP’s office. As I look back, it is not without sadness at the losses that have stacked up over time. The writings of those with CFS read like Auden poems in their chronicling of loss. Even if just for a passing moment, there will be a time most days when I am filled with grief, anxiety or frustration. Still, it’s funny - but I am far from unhappy.
I can see there has been noticeable improvement. Once a week I can now drive the 20 minutes to my mother’s house where she takes a day off from work as partner in a law firm. We rent films, catch up on family gossip and stuff our faces with chocolate. It’s a start. With the use of a wheelchair, I can manage a hospital trip to an Immunologist once every three months.
Work has unexpectedly picked up too. With the small increments of improvement, I’ve been able to take on a second artist, one of my all-time favourite jazz vocalists; a sign that things are headed in the right direction.
I suppose, if there is a lesson to be learned, it is about fragility. One minute we can be on course, caught up in the enthusiastic pursuit of the things that make us happy; the next, flat on our backs, the goal-posts shifted not an inch but a mile. Best to live for the moment, as so many say and so few actually do.
It’s an exciting time in the history of the illness. Cutting-edge leaders in Immunology, neurology and biochemistry are on the brink of great things, only recently having been given funding to do what should have been done decades ago. But there’s still a long way to go. Researchers from the University of Miami have documented the level of disability experienced by those with CFS as “often worse than MS and equal to that of a patient with late-stage AIDS.” It is a sad fact that suicide is still a major concern for those who treat the severely affected.
To attempt to describe this experience in its entirety - this curious thing called Chronic Fatigue Syndrome and how it feels - is to find oneself unwillingly and invisibly embarking upon a profound, existential journey. One that comes to question every notion of the self, of who we think we are, to a place so deep in the soul it is only otherwise touched by love and art.
Given a choice and a cure, I would leave it all behind in a heartbeat. But not without the lessons I have learned along the way.
* Mark Pullinger is based in the UK email@example.com For further information about CFS/M.E. in the UK, contact Action for M.E., a leading charity dedicated to improving patients' lives http://www.afme.org.uk