Books are extraordinary in the way they provide stepping stones through the dilemmas and difficulties of life. With the usual serendipity of reading, I’d followed up a mention in Susan Hill’s collection of essays, Howard’s End Is On The Landing, to a slim volume by Michael Mayne, A Year Lost and Found, which is a memoir by a clergyman about his experience of ME. Michael Mayne was a rather starry sort of vicar, having been Head of Religious Programmes for the BBC, and Dean of Westminster, definitely a top dog job in the church. Just prior to his appointment to Westminster, he was vicar at Great St Mary’s, the central church in Cambridge, and it was over the course of his time here that he fell ill. It began as a kind of glandular fever, complicated by chest pains and exhaustion, that attacked him in May 1985. A whole barrage of medical tests failed to indicate any notable cause, but as time passed, the illness maintained its hold, keeping him weak, fatigued and suffering. A year later and he might be conducting a few services, and resuming some of his duties, but any exertion leaves him worn out, and some of his symptoms linger on. Almost two years later, he finally gets the ME diagnosis, and I’m not surprised it was hard to achieve. It is only very recently that chronic fatigue has gained any credibility in the average doctor’s mind, and still so little is known about it.
The first half of the book is written in diary form, detailing the progress of the illness. The second half, however, uses his experience as the basis for a meditation on suffering and spirituality. Effectively it’s a return to the formidable question ‘why does God allow suffering?’. Now, I have very little understanding of theology, and don’t trust myself here to summarize the argument, so I’ll quote Michael Mayne at the crux of his discussion instead:
‘[T]hat which has most to say to the sick or suffering person… is the Cross of Christ. That Cross shows us at our most hateful and destructive: equally it shows God in Christ as his most forgiving and creative. Whatever we do or fail to do, whatever we feel or fail to feel, though the heavens seem barred against us when we try to pray and no answer comes, yet there is no diminution of his love. “If I go down to hell thou art there also.” ‘
This made me think about spirituality. It’s such a nebulous word, and I feel that I use it without really understanding what it means. But having read this book, I began to think about it as a kind of embrace or possession by the life force that runs through us all, from our ancestors and onto our dependents, in a permanent, unshakeable current. Rather in the way we can all turn on our televisions without diminishing the signal, so we are all tuned into the electric spirit at the heart of life, running through our veins, regardless of the kind of programme we’re receiving, good, bad, indifferent. Spirituality is, I think, the solid awareness that we are attached to something indomitable in living, some might call it love, some might call it trust, some might visualize it as a river that constantly changes whilst remaining ever the same.
And having thought about this, I realized that my own connection to this spiritual source is very weak. It could be the experience of twelve years of chronic fatigue – it does rather undermine your sense that things will turn out right eventually. But maybe the absence of spirituality is partly what caused the illness in the first place. I don’t believe in my unity with a benevolent force greater than myself; I think the buck stops here with me. I don’t have faith that everything passes, or that things will be the same once the current storm has passed, or at least not unless I put in a great deal of effort to ensure they’re sorted myself. I feel far more convinced that people’s love for me will wither and fail, that chance will pass me by and that disaster will be my fate. Reading this book gave me the uncomfortable awareness of this spiritual dimension as collapsed in on itself. Alas, I don’t think it’s something I can fix overnight.
Michael Mayne’s account of his own response to ME is reassuringly honest. He readily admits that his capacity to pray was severely reduced, and he was dependent on the knowledge that his parishioners were praying for him. Being grateful for his suffering, which one colleague pressed him to do, was ordinarily, humanly, beyond him. And one phrase from a healer he saw struck him particularly. When he asked him why he had been so vulnerable to the virus in the first place, the doctor replied ‘Perhaps because your inscape does not match your landscape.’ As troubling as it was to admit the truth of this, Mayne could see that he was right. Priests have to take in a lot of other people’s negativity, their sorrow, anger and sadness, without having much chance to express their own. Years of being receptive, not to mention overworked, had left him prey to unacknowledged tension and guilt. What he needed to find once again was congruence, the sliding into harmony of inner and outer worlds, and that meant restoring a measure of peace and spaciousness to his soul. Whether he managed it or not, I don’t know. The account ends before he is cured, and yet having already begun his job at Westminster, not a role one imagines could be restful. But what is so admirable about this little book is the portrait it paints of an intelligent, spiritual mind working on the hardest challenge it’s ever encountered. He was without doubt a man who had the courage of his convictions, and who worked to remain loyal and passionate to his calling and to his sense of himself within it. There are very few books out there about the experience of ME, and this is a heartfelt one.
A thoughtful post with a lot of food for thought, Litlove.
“Spirituality is, I think, the solid awareness that we are attached to something indomitable in living”– I like that. And it isn’t contradictory to your belief that you have to solve your own problems. You are attached to your son and that attachment will remain and sustain him even as an adult though he will be responsible for himself.
“But having read this book, I began to think about it as a kind of embrace or possession by the life force that runs through us all…in a permanent, unshakeable current.” I like that, too. I’d just add that the tv can be plugged in but not turned on. Or it can be turned on but only have rabbit’s ears.
Perhaps the spiritual equivalent of cable is practise. And it’s hard when the body is discomforted or there is a lot of mental disturbance. The book has greater authority because of Mayne’s sincerity in writing about that. But the incongruity that affected his spiritual cable was established before the illness.
Perhaps getting those cables installed and cleared, along with congruity and healthful habits, can carry us through those times when prayer or meditation or mindfulness is too hard.
I’m glad to hear about this book. The spiritual dimension of M.E. is not often talked about in a serious way. I feel tremendously lucky to have “found religion” (in reality, it found me) just before I got sick. I really have no idea what I would have done without it—it doesn’t bear thinking about. Believing in the love God has for us, the value of every person, and an afterlife (however sketchy the details!) really makes it OK, or at least as OK as anything else we have to put up with in this life. It’s OK to be sick when the purpose of life has nothing to do with being healthy.
This sounds like a wonderful book. As I think you know, I study theology, and I can tell you that so many books about pain and God try to provide pat answers, but I don’t think a truly honest story is ever pat. The inability to pray or be grateful for suffering are something any person of faith has experienced. The television metaphor is an apt one, I think. The signal is always there, but we don’t always turn on the set, or we may have our antenna pointed the wrong way, or some outside interference could be affecting how well the signal gets through. The signal is the same; it’s everything else that changes.
Thanks for this, Litlove. There are a number of people that I think would be glad to read this and I shall pass the reference on. I remember Mayne from his radio days and am sorry that he’s suffered so much. I thought the comment about the difference between the ‘inscape’ and the ‘landscape’ was particularly telling. I know that experience.
What a lovely post Litlove. I hope you found some sort of glimmer of hope or comfort in this book. I especially like what you say about spirituality. May your connection be strengthened if that is what you are seeking 🙂
Thank you for this. The people I know who are the kindest and most generous are often the same people who believe, as you do, that “people’s love for me will wither and fail, that chance will pass me by and that disaster will be my fate. . . .” I think there’s something about knowing that this is possible that transforms good people into extraordinary people, as you surely are.
Lilian – thank you for your own thoughtful reply. I think you are right to consider practice as lying at the heart of spiritual connection. It does come through in what Michael Mayne is saying, as he is aware that daily prayer is an essential part of his faith, not just an optional extra. And I like the idea of the television with its rabbit ears!
Sylvia – having read this book, I can see that a strongly held faith would indeed be a remarkable source of comfort in trouble. I’m so glad to know you had that.
Teresa – I did know that but had forgotten it! You’re quite right that it’s the pat-ness in so many spiritual works that irritates. Anything worthwhile is also hard won, I think, and true value comes at the cost of profound investment, of time, energy, thought, heart. That’s the real plus side of this book – I felt the author was always being honest, and it made it so much more real.
Ann – I’d be delighted if you would spread the word. There are so few books about ME. It’s lovely to think you remember him. The poor man died a few years back now, but having left a number of remarkable books behind him, by all accounts.
Stefanie – oh hugs to you! What a lovely comment. As you know, I gain the vast majority of my strength from ideas, so yes, this book was helpful, and I was grateful for it. 🙂
Lily – you really do have the most remarkable gift for saying wonderful things. You’re amazing. Thank you for that, my friend, and a big virtual hug coming your way.
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I really like your definition of spirituality, Litlove. I’m trying to figure out exactly what I think it means, and your definition is very useful. I’m interested in the ways our connection to the spiritual source you write about can change so much over time. Last winter I was feeling very disconnected from it, and now I feel so completely the opposite, and that’s a short space of time! I wonder at my own inconsistency. A sense of spirituality comes and goes with me, and I don’t entirely understand why that is. But anyway, all the thinking you’ve done about it sounds so interesting, and I think it’s exciting to consider how developing a connection to spirituality might help you.
Having first read this post yesterday and coming back to it today, I find I’m still mulling on this one, dearest LL. I feel and believe many things very deeply, but could hardly be considered ‘spiritual’ in any conventional sense. Nonetheless, I feel very full, and I don’t believe my missteps and hardships, such as they be, are attributable to any sort of spiritual lack. On the contrary, I think they unite me absolutely with every other person, and are therefore something that, in a strange way, I cherish.
I’ve also been mulling over this one. I think spirituality is such a personal thing and I get a bit uncomfortable when talking about it. For an agnostic like me, the question ‘why does God allow suffering?’ can’t be answered since I see God as either a kind of life-force behind the universe or as different people’s constructions of what the meaning behind the universe is. God is the leap of imagination we take to make sense of things, and all the communal wisdom and customs and rules and stories that go along with that. But I like your take that spirituality is about the living spirit in all of us, and our connection with that river of life.
What happens if you never find the signal–or it never finds you. It’s all very frightening really.
Thank you for this post. I am hopefully back to the blog community, and I look forward as usual to your lovely posts!