M.E. (Chronic Fatigue Syndrome)

The Very Revd Michael Mayne, who was for ten years Dean of Westminster, reflects on the time before that when he was unable to work because of ME, and the light he discovered on the other side of the dark.

This article was first published in the Spring 2003 issue of Chrism. The author's profile below is from the same date

The Very Revd Michael Mayne is the retired Dean of Westminster Abbey, where he served for ten years. His previous ministry was as a parish priest in south London and Hertfordshire, as Head of Religious Programmes for BBC Radio, and as Vicar of Great St Mary’s (the University Church), Cambridge. In 1996 he was appointed Dean Emeritus of Westminster and retired with his wife to Salisbury. He has been a Council Member of St Christopher’s Hospice in South London for sixteen years, and until retirement was Chairman of the London Ecumenical AIDS Forum. He is the author of four books: ‘A Year Lost and Found’ (Darton, Longman & Todd 1987), ‘This Sunrise of Wonder’ (Harper Collins 1995), ‘Pray, Love, Remember’ (DLT 1998), and ‘Learning to Dance’ (DLT 2001). In retirement he writes, leads retreats, learns pottery and lectures on spirituality and the arts.

© Guild of St Raphael

The Other Side of the Dark

In the spring of 1985, in my mid-fifties, I had spent six happy, busy, spinning years in the parish of Great St Mary’s, Cambridge. Whilst wonderfully fulfilling, it was also stressful, not least for a perfectionist. I had a viral illness and my immune system didn’t recover. I was left with a total loss of energy, extreme muscle discomfort, swollen glands, aching limbs, a gnawing pain in the lungs, a persistent nausea and an inability to concentrate or remember words. I was to be housebound for a year.

After the first few paralysing weeks I was able (on good days) to walk slowly once round our garden, though it felt like walking through mud. I visited clinic after clinic. All the tests proved negative. One doctor diagnosed toxo- plasmosis (wrong); a second, pleurisy (wrong); a third, glandular fever (wrong); eventually they stopped guessing. I tried acupuncture, large doses of vitamins, an octogenarian homeopathic doctor (who, unlike the NHS doctors concerned with malfunctioning bits of my body, encouraged me by looking at me holistically, diminished in body, mind and spirit); but all too soon he died; and the laying-on of hands. I wasn’t sure what to try next. I thought of the Emperor Menelik II, the resourceful creator of modern Ethiopia, who was in the habit of nibbling a few pages of the Bible whenever he became ill. In 1913, while recovering from a stroke, he ate the entire Book of Kings and died.

But in the end I was one of the lucky ones. After eighteen months I seemed well enough to take up my new post at Westminster Abbey. Three months later I was struggling again, and only then was I referred to an expert neurologist who named my illness as Myalgic Encephalomyelitis (ME). He explained that it arises from an inappropriate bodily response to a viral illness (often complicated by stress) that results in neurochemical disturbances in the brain and with a profound effect on the immune, endocrine and nervous systems. Psychologically, a diagnosis is a huge relief, and once safely diagnosed I began slowly to improve.

During my long convalescence I had written a short book, A Year Lost and Found, in which I tried to describe as honestly as I could what it felt like to be knocked flat in mid-journey and left struggling in the dark. The response took me by storm. After fifteen years the book has sold 15,000 copies and is still selling, and I have found it hard to cope with the hundreds of letters that have come as a result and the many people who have wanted to come and talk. After reading it, an elderly priest (with perfect English discretion) asked if I enjoyed undressing in public? To which the answer was ‘not much, but sometimes, if you are going to speak in words with which people can identify, and from which hopefully they can take comfort, then you have no other option’. For at that time, many doctors were dismissing their patients’ stubbornly persisting symptoms as ‘yuppie ’flu’, leaving them not only diminished but demoralised.

Too often we professionals—priests, doctors, counsellors—can allow what we perceive to be the boundaries of our role to inhibit us. Professionalism may properly involve a holding back of large parts of oneself, yet (as Wordsworth wrote) ‘we all share one human heart’ and there are times when we need to share our stories as a way of affirming our common humanity and helping to authenticate what others may be going through. In one sense it is true that (as a professional) when you sit with someone, listening to their pain and trying to assess their need, you must seek to combine compassion with a necessary professional distance, one foot remaining on the river bank. No counsellor will be of much help if both are floundering in deep waters; yet people are not problems to be solved but mysteries to be loved, and they may only be drawn to you in the first place if they sense that you too have known at times what it feels like to stumble along in the dark.

Montaigne writes in one of his essays:

Plato was right in saying that to become a true doctor a man must have experienced all the illnesses he hopes to cure and all the accidents and circumstances he is to diagnose. Such a man I would trust. For the rest guide us like the person who paints seas, rocks and harbours while sitting at his table and sails his model of a ship in perfect safety. Throw him into the real thing, and he does not know where to begin.

An impossible ideal, yet I think we get the point. Only with imagination and empathy can we know at a deep heart-level what it feels like to be bereaved or seriously ill or to be sent spinning by life at its cruellest. And if you have tasted something of the dark shadowlands of sickness or pain or loss that most people enter at some point in their lives, then it will deepen your compassion. People who come in search of help and healing seem to recognise intuitively a kindred spirit: someone who knows the feel of that landscape; someone who knows, too, that there is light on the other side of the dark. By knowing when to hide and when to share our vulnerability we can affirm one another on the often distressing human journey.

But life has moved on. My then unfashionable illness is now known as ME/CFS (chronic fatigue syndrome), though not all neurologists lump the two together quite so neatly; and ‘fatigue’ carries the suggestion that you are permanently tired when you are not so much tired as totally weak, daily drained of energy. It has at last been officially diagnosed by the Government Chief Medical Officer’s Report (2002) as a severe and potentially disabling clinically diagnosed condition affecting four people in every thousand, people of all ages (and recognised, incidentally, as the single most common cause of absence from school). It most commonly affects highly capable and very active people, and a full and complete recovery becomes less likely for adults who have the full flush of medically agreed symptoms for more than four years. Of course such generalisations are unhelpful, for each person’s illness and projected recovery is unique to them. And even in the most severe cases there may be quite long periods of remission, that larger pattern replicating the depressingly unpredictable pattern of the initial illness, where you may seem to be making progress, only to find yourself (often for no apparent reason) back where you started. For many it is a frustrating switchback of minor peaks and troughs, an undulating graph, though if you are sensible, patient, hopeful (and, no doubt, fortunate) the line of the graph will in time return to normal.

My life, too, has moved on; there have been three other books, somewhat more ambitious and diverse; yet (infuriatingly!) it’s the M.E. book that people most often write about; and looking back, I realise that this illness, which at the time seemed so devastating, was paradoxically one of the most fruitful things that happened to me. For that small book was not only about the vulnerability we all share; it was also about the sort of questions I urgently needed to ask myself if the experience was not be wasted and something creative, and therefore redemptive, emerge from what felt like a wholly negative period of my life and ministry.

So what did my time of sickness teach me? Not much that I didn’t know, but the difference was that I came to understand certain truths at a far more profound level, a shift from mind to heart.

1. The need for inner space

I had asked my homeopathic doctor why my immune system had failed to respond, why I had proved so vulnerable? ‘Perhaps’ he said with a smile, ‘because your inscape does not match your landscape. You have all the stiffness’ he added, ‘of the public man.’ He was telling me that those truths I sought to live by, the inner landscape of my heart, didn’t really match that world where I had to function as an over-busy professional with a circumscribed role seeking (and failing) to meet all kinds of ill-defined expectations. He helped restore my sense of worth. Over the months I was forced to reconsider my priorities and, above all, the lack of that inner space born of simple daily contemplation that restores the balance in an over-active life, and that people have a right to look for in their clergy.

2. The need for positive thinking

I understood the isolation that illness brings. ‘As sickness is the greatest mystery,’ wrote John Donne, ‘so the great misery of illness is solitude.’ When you are ill your world is reduced to your aches and pains, and you become anxious, and perhaps angry and, in the small hours of the night, full of self-pity. Illness means a fundamental change to the way in which you perceive and experience your body. You are forced to acknowledge your impotence and your mortality. Indeed, it has been said, ‘Disease can so alter the relationship that the body is no longer seen as a friend but rather, as an untrustworthy enemy’, and as the illness continues you feel increasingly vulnerable. A vital part of that healing is the reversal of this negative, self-absorbed way of thinking. I learned that my illness was uniquely mine, a subjective experience, an inner event which can’t be fully shared even with the one who loves you most. But I wanted people to try. Our illnesses and our reaction to them are as individual as our faces or our finger-prints. My illness was an expression of the unique and vulnerable person I was, not simply a clinical case with a text-book diagnosis. For a short while I was lucky enough to find a doctor who understood that each of us is an inter-related whole, an embodied spirit, and who went beyond the clinical questions to ask those deeper questions: ‘What is it like for you?’ It has been estimated that 70% of all medical care is ‘good mothering’ and 70% of the healing process performed by healing powers and resources the patient already possesses.

3. Learning to depend on others

The third lesson I learned was a new dependence on others. When I was diminished physically and mentally I was equally diminished spiritually. While I rediscovered the power of the Psalms to speak to every aspect of our human journey, I found it almost impossible to pray. Yet somehow that didn’t matter, for I knew that I was wonderfully upheld and supported by others, and that morning and evening I was being named at the eucharist and at evening prayer. Visitors who were brief, affirming and tactile (and who weren’t tempted to talk about their own past illnesses) were very welcome. Especially those who understood the cost of a drawn-out, seemingly unchanging illness to those who care for you.

4. Discovering the God who is vulnerable

My illness (so trivial compared to the darkness so many face) confirmed a truth that lies at the heart of the mystery that is suffering: the fact that life is unpredictable and frequently unfair, too often claiming the good and the innocent among its victims, but that God does not intervene either to answer our bewildered questions or to play tricks with our freedom; instead he does that more astonishing thing: he enters with us into the questions. Calvary is a window into the bewildering truth of the Christlike God who suffers within and alongside his creatures, and is, as we are, vulnerable to pain. But that is another story for another time.

5. Everything may be redeemed

But the last lesson I learned was that my long year of illness was not simply lost but also found. The theme of death and resurrection that runs like a golden thread through creation and through our human story is an affirmation that nothing need ever be wasted, that good may be brought out of evil, that everything may be redeemed. At my lowest a nun had suggested that I ask myself the question: ‘What do I really want?’, and I had glibly answered: ‘To be made well.’ But I gradually understood that this was an inadequate answer, for what I really wanted was to know that the year had not been wasted, to learn the lessons of my sickness, to accept that I wanted a different kind of healing. I wanted it to be a valued part of my journey. Perhaps at last I was beginning to glimpse what the apparently absent, always reticent God had been doing all the time.

© Guild of St Raphael