After years suffering from chronic fatigue syndrome, one peacenik is walking from Rome to Jerusalem. THEO PANAYIDES meets him as he passes through the island
By the time you read this, Paul Haines should have arrived in Jerusalem – though how to get there was still uncertain at the time of our interview. When I left him, he was definitely planning to set off the following morning – either to walk to Limassol and find a boat to take him to Haifa, or walk to Larnaca and take a flight instead. The former was by far his preferred option, just because sailing (i.e. staying at ground level) is closer to walking than flying is – and walking is the point of the exercise, Paul having set off from Rome in late July and trudged across Southern Europe “for peace and reconciliation”, one man with a rucksack on the so-called ‘Peacewalk 2015’.
He shows me the rucksack, adorned with a small British flag and (more importantly) the word ‘Peace’ in several languages; the words have been stacked quite deliberately, making up a logo which – especially when seen from a distance – appears in the shape of a dove. He also has a pilgrim’s “passport” and a book with a light-purple cover, which he offers to people he meets for their comments. Paul is 66, thin and rather diffident, with a neatly-trimmed beard and calm blue eyes. His handshake is soft, either the handshake of a gentle soul or the handshake of a man who’s shaken a lot of hands in the past few months.
Does he look tired? He does, in a way. Not tired in the sense of fed-up or impatient, more the serene tiredness of a man who’s just climbed a mountain and is now looking forward to a good night’s sleep. Then again, maybe I’m projecting – because, in a sense, Paul Haines is the last person who should be attempting this kind of walk, hiking his way across half a continent. For about 18 years he suffered (and maybe still suffers, for the disease is incurable) from chronic fatigue syndrome – also called myalgic encephalomyelitis, or ME – a mysterious illness that produces a pervasive feeling of exhaustion, limiting patients’ ability to perform even everyday tasks. Never mind walking from Rome to Jerusalem, for most of the 90s and early 00s Paul could barely walk from his home to the corner shop; “I know people that can’t leave the house,” he says grimly, “and have to have help every day”.
His own case wasn’t quite so crippling, mostly because he was able to pace himself. Many people, those with young kids or without a support system, try to do too much – they have no choice – and make it worse; if you fight the illness, “it becomes more chronic”. Paul, on the other hand, never married, has no children, and received support from his then-employer, the BBC, where he’d worked quite happily as a set designer. “I loved it,” he recalls of his pre-ME years, “it was a very good job”. He worked on all kinds of programmes, from quiz shows to dramas to Top of the Pops. The hours were long – 100-hour weeks weren’t uncommon while filming – so you ended up socialising with the people from work and “it became your life, in a way”. There was camaraderie, and a sense of community.
He’d been working at the Beeb for about a decade when a friend pointed out that he seemed to be getting sick all the time. Before that, “I’d always been very healthy” – but it was true, he’d been coming down with the ’flu more and more in those last few months before he was diagnosed (the causes of ME are controversial, but one theory is that it attacks the immune system). There was stress at work, which may have contributed; he was also in the throes of splitting up with his then-girlfriend. Then, one day in 1992, he was in a shop finding furniture for a TV show “and I just thought ‘I can’t move’, and I had to sit down. Then someone got me a taxi, took me back home, and I just couldn’t do anything”. The days passed and he didn’t get better, needing help with the simplest tasks. For nine months, the doctors probed and prodded – then finally reached a diagnosis of chronic fatigue.
What were his symptoms? How did he feel? That was part of the problem, says Paul: when doctors asked him to describe his symptoms, he didn’t know where to begin. “It does affect so many different parts of the body. So I’d have headaches, sore throats. I’d get cramp. I’d get pain in the muscles, the muscles twitch… It was difficult to walk sometimes. The sleep pattern was very bad, my appetite was very bad. And just tiredness!” he exclaims, his voice trailing off as if to say that further explanation is unnecessary. “Also concentration was bad, memory was bad…”
His employers were patient, allowing him time to get back to work – but eventually it became clear that, even with a slight improvement in his condition, the work was too much for him now. He was pensioned off in 1996, a development that shouldn’t have shocked him but somehow did; he was only 47, yet was being treated like an old man. Did he get depressed? “I tried not to think about the work I had been doing,” he replies wistfully.
His girlfriend at the time was German and they relocated to the Austrian countryside for a year and a half, living in the mountains; she went off to work every morning, he just pottered around doing “a bit of walking, a bit of gardening”. It was quite relaxing, but eventually it palled. They broke up, and Paul moved back to England – actually Cornwall, where he used to holiday as a child. He began an MA in History of Art, specifically Surrealism (a long-time interest, even before his own life became surreal); he sang in a community choir and also got into permaculture, a kind of sustainable agriculture. “Those are the three things that sort of kept me interested, motivated. [But] I still struggled”. He eventually dropped out of the MA, as “mentally it was very difficult”.
How does one get from that quiet, rather plodding, rather undemanding life – undemanding by design, since anything more would be impossible – to walking from Rome to Jerusalem? Actually, the Peacewalk isn’t even his first such project: he walked from London to Rome last year (raising awareness of Alzheimer’s) and previously walked the pilgrims’ route to Santiago de Compostela, across northern Spain. It’s as though walking these old paths speaks to the new life inside him (“There’s something that is very magical about walking these historical routes”) – and as though walking in general is a way of thumbing his nose at his years of inertia, a celebration of how far he’s come.
Yes, but how? The simple answer is that ME is a very strange illness that operates differently on different people. Working with a noted immunologist named Anthony Pinching, Paul tried a variety of medicines throughout the 00s – and finally hit on one that exhibits very mixed results: on some patients it doesn’t work at all, others see a marked improvement but only if they keep taking the drug for life. For him, on the other hand, two batches were enough for a cure (though neither Paul nor Prof. Pinching can be sure if the disease is gone, or is merely dormant) with no further treatment. A mystical person might’ve called it a miracle; Paul, being a sensible person, started walking instead.
Something has changed within Paul Haines in the last few years; he says so himself. It’s not just the walking; he’s also started volunteering with the NHS and the Alzheimer’s Society, and credits it with giving him more confidence. Whatever the reason, he’s not quite the same person he used to be. “I think my friends would say basically I’m the same person,” he demurs, not wanting to make any grand claims. “But I think a lot of my friends would say: ‘I don’t understand Paul’.”
His personal style is low-key. He’s not larger-than-life, or a born leader. “I was always quite shy,” he agrees. “I didn’t like to talk in public”. He tells me of his one major mishap on the journey from Rome to Jerusalem, an encounter with wild dogs in northern Greece that almost proved fatal – yet, even here, it’s not his style to embellish or pump up the story. The dogs (four of them, bigger than wolves) were almost upon him, ready to tear him to pieces; he was literally saved by a passing car that opened its door to him. “I’ll always remember that, because I was very scared. So I was very pleased that the car stopped and took me away,” he says mildly, stretching the British gift for understatement as far as it’ll go. Paul, in short, is a quiet fellow. Yet his recent experiences – allied perhaps with his earlier experiences, i.e. the illness – seem to be stirring something new inside him.
He shows me his book, full of comments from those met on the road. “This was from a monk on Patmos,” he says, leafing through the pages. Here’s a Nepali man who drew a dove in bright colours and wrote “Peace while walking” in Nepalese; here are Syrian refugees met on the island of Kastelorizo, one of whom addresses her words “to his white heart, to my brother in humanity”. Her husband lost his leg in a car bomb in Damascus, says Paul, they showed him a photo of the shattered car. Here’s “another lovely couple, they had both been tortured and they showed me cigarette burns, electrical [marks]. I think he was quite damaged from the torture… To hear their stories, and then to see them writing a piece, that was quite – quite –” he searches for the word, “quite strong”.
Last year, he talked about his London-Rome pilgrimage – and pilgrimage in general – at Canterbury Cathedral, to a congregation of 600 including the Archbishop himself. They phoned to invite him and “I said ‘Ooh, not sure’,” he recalls, “but then overnight I thought ‘Yeah, why not?’.” Now he’s almost in Jerusalem where the media will ask about the Peacewalk, and solicit his thoughts on peace. “Something’s happening with me. It’s difficult to describe what’s happening,” he explains uncertainly. “Something’s driving me to do this. Because, a year ago, I didn’t know I’d be doing this. So something inside is making me do this.”
He sighs, looking ready to cringe with embarrassment. “It’s a really difficult question, because I…” He pauses, frowning. “I think it must be, but I’m not sure – where the focus is”. Then he tells me a remarkable story of something that happened on his first big walk, to Santiago de Compostela. He met a fellow pilgrim while having dinner at the hostel, an Italian who called himself, unusually, Robert. That was also the name of Paul’s brother, who’d died some years earlier, “so overnight I thought ‘Ah, my brother is walking with me’. So the next morning I started walking, and I was walking along and suddenly my hands went like this” – he turns them away from his body – “and I felt my mother and my brother, who’d both died. So I was holding their hands”. Then “I started to hear noises, and see colours, and I sensed – because I was walking this historical path people had been walking for thousands of years – I started to sense people that had walked this path. I then had to sit down,” chuckles Paul, turning shy and sensible again. “But it was a very strong moment.”
Whatever it is that now drives him, he’d like it to continue. When he goes back to Cornwall he won’t put his feet up, however tired they might be from all those hours of walking. Could he see himself becoming a peace activist? “Well, I – I’d like the idea of being an activist,” he replies hesitantly, but in fact “what I feel I am is a bringer-together of people”.
Yes, but for what? After all, I point out, the only reason he’s in Cyprus now, wondering whether to take a boat or a plane to Haifa, is because the obvious land route from Rome to Jerusalem – through Syria – is impassable, due to the war. So much death, so many bombs. Can one man with a rucksack really make a difference?
He gazes at me calmly. “Well, I don’t want to say I would make a big difference. I hope I can make a small difference – and I hope that my small difference inspires other people to make their own small difference”. It suddenly occurs to me that ‘chronic fatigue syndrome’ perfectly describes the cynicism that afflicts most people when it comes to peace – the exact opposite of his own low-key idealism. “In my head, I’ve got this image of maybe a million people like me, walking around with a Peace sign. And I think that might make a difference”. It might indeed.