Published in InterAction 66, Winter 2008
Once a promising jazz musician, Mark Pullinger’s life turned upside down when he developed M.E. Now living in his dad’s spare room, he shares his story and new perspective on life.
“You have a post-viral fatigue syndrome. Six months and you’ll be back to normal.”
It was July 2003. I was 19.
New Year’s Eve that year, my family and I were gathered on the balcony of my uncle’s North London apartment, watching fireworks erupt over the city. As I looked back over the days and months since that optimistic prognosis from my GP – days in which I realised I could no longer trust my body, in which youthful ambition had given way to a feeling of disconnection and confusion, in which naïve ideas of a swift recovery were dwarfed by increasing symptoms of fatigue, brain fog, fine tremor and anxiety, amongst others – I realised that I had no idea how things would turn out in January.
That would be the last evening out I would have for over half a decade.
Baffling if not frightening
It had all started one morning, a few weeks or so before that day in the GP’s office. I had woken up as normal, expecting to go into college as I had done every other day that term (I was doing a music degree in London) only it seemed, for some reason, as if 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. Having had a clean bill of health for nearly 10 years, it was baffling, if not frightening.
Over the ensuing days, the symptoms became varied and numerous. The worst were the combined effects of a vertigo-like dizziness and an anxiety which I had never before experienced. I am not easily frightened, but at times I was even convinced I might die, that maybe the GP had missed an underlying heart condition, a brain tumour perhaps?
Everything from then on had to be measured in terms of distance – the distance from my car to my first class, from that class to the cafeteria, from the cafeteria to the lift. Though soon I could no longer get into college at all.
It was then the distance between my bedroom and the bathroom, from the sofa to the front door, from my hands to my head in the shower; it was all that little bit too far.
And so, soon afterwards, I decided to spend some time – two weeks, I had thought – at my father’s new flat in Surrey.
The spare room – now my room – had been a mess, filled with dust and boxes left over from the move. I never thought to remove those boxes or clear out the chest of drawers, or move the desk that prevented the wardrobe door from opening.
Just as a child knows that the monsters in his cartoon are make- believe, so I thought that if I didn’t unpack, didn’t get too comfortable, that my being there was also make- believe. I could pretend that this was not how things were going to be from now on and that my home was still in London, at college.
It was, perhaps, a fitting place to go for convalescence. A slower pace of living, detached from the hustle and bustle and the deadlines of life in London.
After a year or so spent housebound and without the necessary distractions of routine, I began to find myself inhabiting an altogether different place, an unfamiliar way of living devoid of motion or doing. I was entering the world of the patient.
I was still able to work from home in some small capacity. Immediately before becoming ill, I had been putting a band together, something most young jazz musicians (I had been a saxophonist) do to start out. Unable to go ahead as planned, I had suggested to one of them, an established 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 lifeline 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.
Aside from these brief bursts of activity, my focus was centred on doing whatever was possible for recovery. I had seen at some point early on, a neurologist who had asked if I still remembered what it felt like to be well and who – in the absence of a cure and with few drug treatments available – had recommended a carefully graded increase in the amount I could walk each day. At first 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 seven minutes.
I remember some time later, my father pulling up in the drive in his silver estate car, filled with the contents of my old room. There was the white desk with orange retro draws, the turquoise laundry basket I had picked up for three pounds at Ikea two summer’s before, my college books and papers, my CDs and DVDs.
I had tried to keep that room in London for as long as possible so that when the day arrived, I could make an easy transition back to that other life. As long as I had that room, being in Surrey was a temporary arrangement. But now it was gone. And I realised in that exact moment that the life I had, the one I had taken great pride in building, had given way to another, more reflective and acquiescent.
By the time three and a half years had passed, I began to wonder what my friends and family made of it all, 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 could only manage a visit from 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 or, at least, that was what I rumoured and assumed. There was no way of knowing for sure what anyone really thought. Nor should it have mattered, I know. But somehow, it did.
Sometimes I even saw them, those people whom I had known previously. Or rather, for a split second, I sometimes thought I did. On the occasions when I could venture outside for a short time, they appeared, like ghostly apparitions, in the windows of cafes, walking down the street, in passing cars, in the way in which parted lovers see each others’ faces long after they have gone their separate ways. For the longest time I couldn’t make out the meaning of that
mind-trickery, until one day it occurred to me – I had never said goodbye.
This lack of human contact, of interaction and exchange, the loss of valued relationships, good friends, far eclipsed the physical debility of the illness itself.
There is something wonderfully cathartic about love in all its myriad forms, its “affection and concern” (R.D. Laing) and its potential for healing. Likewise, its absence, for malaise. “But O for the touch of a vanished hand,” as Tennyson said. These are the real losses we feel during long-term illness.
Flat on my back and moving on
Relief would come when I was given a brief window to foray back to normality, a good day, about once every six months. On these occasions I would make a frantic dash for a coffee in a nearby restaurant or my local Starbucks.
Such 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.
I would lie recumbent in bed, replaying the sights, sounds and smells – flustered shoppers and animated business-men, the whirring, clattering sounds of espresso machines and crockery, fragrant smells of macchiato and blueberry muffins. It was a sensory overload to me. I wonder how many of us notice these things?
As I write this now, in September 2008, it is getting on for five years that I have spent here in the quiet sleepy lanes of Surrey. As I look back it is not without sadness at the losses that have stacked up over time.
I was 19 when I arrived here and I am now 24. Even if just for a passing moment, there will be an instant some days when I struggle not to feel cheated out of this time or feel anxious about the future.
Still, it’s funny – I am far from unhappy.
There has been noticeable improvement. I can now drive into London three or so days a week. I can have a coffee in a quiet café, or pick up my brother from Victoria station. I can go for a walk through Hyde Park, or visit my family and the occasional friend. I cannot now remember what it feels like to be well, but I can do those things.
If you would like to contact Mark, you can do so by email.
View a pdf of this article