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Faith and infidelity

Rebecca de Saintonge

When her beloved husband contracted degenerative brain disease, Rebecca de Saintonge faced a world of pain and spiritual doubt as he slowly ceased to function. Where was God? And was it wrong to find solace with another man?


19 June: "So now my love, I know the worst. Your brain is shrinking inside your skull. You are going to disintegrate very slowly… you will feel our loving in rags and your God absent, and I will hold you to my breast and cradle the shell of your skull, for you will have gone, my lover, my dear one. But not quite. But I am with you. I am your wife. We will see this illness as a journey we take together. I am so afraid of what it will actually mean."

These are the first words I wrote when I learned that my husband Jack had a degenerative brain disease and would slowly lose all his physical and mental faculties. I remember coming home after we had received the final diagnosis, putting Jack to bed, and then standing at the bottom of the stairs and howling, but without a sound, like a wolf baying at the moon in a silent movie. I felt as if I'd blown up inside and only my skin was holding me together.

Because writing is what I do, I decided to keep a journal in the months ahead. I wanted, among other things, to see where God was going to be in the emotional chaos I knew was to come.



Living in the country I had grown up with a mystical sense of the divine. God was alive to me in the wind, the waves, the glorious, powerful outside. This is not unusual in children, I think, who often have a natural connection with things transcendent, whose sense of 'the other' is unpolluted by dogma. But the innocence of this childhood faith was soon to be shattered.

When I was eleven my mother, encouraged by the local priest, deemed it time for me to go to confession and dwell on my wickedness. My wickedness, it appeared, resided largely in my bottom, which my mother corseted at an early age because 'all the men are looking at you'. As I weighed barely seven stone, there can't have been much to look at. But that, really, put paid to innocence. As Adam bit on the apple and tasted sin, so I bit on the holy wafer and tasted guilt. The accusing wine of the blood of Christ began to flow through my veins.

So the God of my childhood delight became my accuser, and as the sense of personal connection grew dimmer and dimmer I wrapped myself in words. Words, words, words. The words of the Psalms, the words of the Creed, the words of the Confession, the words of the Absolution. It was words that trapped most of the spiritual life in the Christian church I grew up in, strangling spiritual imagination, boxing the divine into a tomb of concrete fomulas. But they put a framework around the void - because that is what my faith slowly became - and words became my barrier against the nothing. Until, that is, the nothing became all there was.


For years I lived with an uneasy agnosticism - with an absence "that felt like a presence" - as the poet RS Thomas so clearly put it. But I never quite stopped listening, hoping to hear that still small voice. It was when I moved to a new town and saw an ad in the local paper for a workshop on prayer that I decided to give God one more chance. A painful marriage had left me rudderless, and in some desperation I decided to go along. I remember calling out "OK God, if you do exist, be there!"

And there he was, Jack, not remotely like God, with his purple pocket-handkerchief and shock of white hair. His vitality was electric. He seemed to burn up the atmosphere, sparking it with laughter and throwing out, so apparently casually, the most astonishing possibilities as he talked in terms I had never heard before about a God I didn't recognise. He made it seem possible that this God was both real, and approachable - and more than that, exciting.

I had never met a clergyman like him before. His jokes were clearly tried and tested, but everyone was so relaxed. There was a sense not just of expectation, but of easy enjoyment, as if the God they were all talking about was knowable, fun to be with. Could that possibly be true? The God of my childhood had been conspicuously absent for so long by then, and no grown-up God had matured to take his place, that it seemed impossible to me that people with minds could still believe in a God at all. Yet here they were. And here was I. And there was Jack.



It was then, that first evening, that I recognised him. Some might call it falling in love, but it wasn't quite that. It was simply - recognition. We were part of the same whole. That was it. Recognising God took a little longer. But after many more months of intellectual struggle, I did. And of course, in the end, it was not my mind that was finally convinced, but my heart, or rather, my whole being. I was overwhelmed by what I can only describe as a joyous sense of the divine. It was utter delight. And I was free again.

From that moment on I experienced again that personal connection with the divine that had been the core of my childhood spirituality, uncontaminated by theology. Gone was the sense of guilt needing to be absolved, of rules to be obeyed, feelings that had so corrupted those early years. There was only a sense of being utterly loved and accepted, of being re-connected with the source of all that was creative, and hopeful and restorative. It was healing, unconditional love.

Of course, as I began to live the life, theology re-emerged. It became the scaffolding upon which I based my life until, many, many years later, I had once again to cut myself free, and start again in a wordless place. But that was for the future. For the now, I was caught, hook, line and sinker, and it was utterly liberating.

Jack and I married two years later and for the next six years I followed this funny, eccentric, passionate man of mine through a kaleidoscope of colours, from England, to France, and finally to Africa. And it was there, in Zimbabwe, that I first began to worry about his state of mind. He appeared to be having a nervous breakdown, but I knew he wasn't nervous breakdown material. Something very serious was happening to him.



We made a hurried return to England, and after two or three years of disintegrating health and misdiagnoses, he was finally found to have what was then known as Diffuse Cortical Lewy Body Disease, now called Lewy Body Dementia. It's not like Alzheimer's. The patient doesn't necessarily lose track of who you are, or change personality, rather their brain just slowly closes down. One of the most distressing aspect of this particular disease for those who love them, is that they suffer from fluctuating cognitive impairment, so that one minute they may seem perfectly normal, and the next almost catatonic. The periods of dementia can last literally just a couple of hours in a day, or for days or weeks at a time. Then they appear to return more or less to normal and wonder why the world around them has subtly changed.

As one year followed another Jack slowly lost the ability to read and write, to find the right words, or any words. He lost his laughter, he lost his sense of God. He became trapped in a straitjacket of silence, and yet was somehow aware of what was happening, as though with one half of his mind he was watching his own incapacity. He still wanted to be involved, to be alive. On good days he would follow me from room to room asking again and again: "What shall we do now, sweetheart, what shall we do now?"



It's impossible to describe the physical and emotional exhaustion. It isn't just the sheer volume of work and

management needed to keep a household going when one of you is so severely disabled, as anyone in similar situations knows, it's the emotional strain of keeping your grief hidden, of appearing buoyant and positive, of giving, when really you have no more left to give. And of course, as their life diminishes, so does your own. Everything that you are becomes subsumed into the daily business of keeping the dying alive. As they die, you die.

I was determined that Jack should not see the cost of all of this, but the worst thing was having nowhere to cry. I needed to mourn the loss of my man, the loss of our life together, the loss of my own life. But there was never any privacy, nowhere to hide. Nowhere I could go where he would not find me and sense my grief.

One of the extraordinary, but painful aspects, of Jack's illness was that despite his inability to communicate much of the time, he could still feel my every mood. We knew each other so well that words had never really been a necessity. Once, when I asked him in a moment of clarity, what he was most worried about - hoping he would open up about his concerns about his health - he said: "that this will destroy you." I promised him then that I would not be destroyed.



At first I fought to keep Jack "alive", doing everything I could to stimulate him, but as the years went by I realised I had, somehow, to let him go. To let the Jack I knew slowly fade away. As he died, so did our marriage, or rather, as the tangible entity that was Jack changed into something that bore little resemblance to his whole self, so our marriage reshaped itself into something quite different. Still loving, still committed - in fact more loving, more committed, because the price of that love for both of us was not joy, but pain.

But what worried me most through all these last years was my own determination to survive. I promised Jack I would not be destroyed, but I felt like Jekyll and Hyde, one half determined to "die to self", wanting so much to sanctify our suffering, the other half fighting for survival.

Which brings me to Nicholas. To say he took me by storm in the midst of this, would be incorrect, rather he crept - some would say sneaked - into my life, taking me utterly by surprise. My first encounters with him were a curious mixture of mistrust and attraction. I was certainly taken aback, partly by his determination to make my acquaintance, and partly by my willingness to let him. From the moment I met Jack I had never wanted, or desired, any other. And yet here was this new man slowly edging his way into my emotions.



It was to be the last year of Jack's life, not that we knew it, of course, and Nick and I met very rarely, and for most of the time it was mainly for a walk, or a visit to the sea, or even just a coffee in a nearby cafe. Sometimes we managed a little longer, a day or two, when Jack was in respite care, but the point is that for those precious moments I could be myself again. I didn't have to be 'in charge', or make decisions. I had someone to laugh with, to talk to about everything and nothing. His steady affection and friendship became the one firm foothold in the quicksands of our life.

As I carried Jack, hour by hour, wiping up the messes, holding him close to try to comfort his depression, as I hid my own grief in a feigned lightheartedness, as I got up, three or four times every night, to help him, I heard Nick's soft voice saying "you can cope, you can do this". And it was hugely comforting to feel his presence in the background, holding me. I clung to him in that darkness.

But of course, as a Christian, I was also tormented. God did not change his laws to accommodate me, and yet, could Nick's appearance in my life, at this crucial time, somehow be part of God's mercy? I struggled with this for many weeks and finally decided to seek the council of very old friends of Jack's who knew us both well. They had visited us often and could see what our life had become, and they knew, I thought, the depth of my love and commitment to Jack.



Nothing could have prepared me for the violence of their reaction. They likened me to a Nazi, wanting to exterminate someone who had become inconvenient. Now Jack was disabled, they said, I clearly just wanted to push him out of my sight. And how dare I think for one moment I was entitled to any other sort of relationship. Wasn't one man enough for me? I was shattered, but their response gave rise to a most wonderful encounter with Christ.

The next day the wife rang me. The sound of her voice set me shaking. But they had obviously beenthinking about my visit and she began by saying "Maybe you are in touch with a deeper truth." In retrospect, I realise that was a rather amazing thing to say, but at the time I was too upset to hear anything else. Instead, as she was talking, I suddenly became aware of what I can only describe as Christ's presence. It was tangible. I felt as if he was literally putting his arms around me and making a barrier between her voice and my being. He was separating me from her.

To the day I die, I will never forget that moment. My instant thought about it was this, not that Christ was condoning my relationship with Nicholas, or forbidding my relationship with Nicholas, but just that he was with me. Simply that. In my circumstances, Christ was with me. There was no judgement, just his presence. He was holding me.



Recently I have been engaging with daily meditations by Richard Rohr, the Franciscan theologian. He was quoting Bonaventure's description of God as "a circle whose centre is everywhere and whose circumference is nowhere". Rohr went on to say, "You fall into this wholeness - which will actually hold you - when you stop denying or excluding things, even the dark parts of yourself."

During that last year of Jack's life I let go of the need to think of myself as "a good Christian", or even, a good person. I tried to look simply at the reality of my life at the time, the paradox I faced. I wrote them down: Jack had been reduced beyond all recognition - he was alive, but he was dead. Our relationship had changed utterly - I was a wife, but not a wife. My pity and love for Jack was so terrible in its intensity, that it threatened to destroy me, but to continue to look after him, I must not be destroyed - I must care, but learn not to care so much. And finally, I believed in fidelity, but was choosing infidelity. What I wanted was what I did not want. And yet, having said all that, Jack was still alive, and I was still a wife, and our love was, at bottom, utterly unshakable.

This then, was my reality. I had to live in the mess, holding both sides in tension, the good and the bad, the 'alive' and the 'dead', the certainties and the uncertainties, the hopeful and the hopeless. I knew I could not expect then, to know the answers to anything, or even to see any clear direction. My decision to give part of myself to Nick, and part to Jack, were conscious decisions, made with care. I was aware of what I gave away, aware of what I received in return. There was in this a sense of control over circumstances that would otherwise have threatened to overwhelm with their very intensity and complexity. Another woman might have been able to continue without help. But I was not another woman. I was me. And I could not go on alone. To this day, I bless Nick's name.



So where was God then, in all this mess? There is no doubt that while the presence of the suffering Christ became increasingly real to me as our own suffering deepened, my concept of 'God' grew darker and dimmer. So dark, so dim, that some time after Jack's death I found myself once again doubting everything I had previously believed. Had it all been an illusion?

We certainly had not experienced God's peace, as promised. As for the power of intercessory prayer - I can't tell you how many people prayed for Jack's healing. It became hugely burdensome. And did God really have a 'plan for our lives?" And if so, was God's 'plan' that Jack should spend a decade being taken apart, piece by piece, his mind so shattered that he could find no spiritual comfort at all, only confusion and despair? And who was this 'God of love' who needed human sacrifice in order to make us fit for communion? The more I thought about Jack's grace in suffering, the more offensive I found the idea that we were 'born sinners'. Human beings were amazing, and if we were made in the image of God, then our original state was grace and beauty, not sin. If anyone should be doing the apologising, it was 'God'.

Yet when I looked back at the life Jack and I led together, those decisions we made in faith that seemed to be an answer to prayer, those almost physical experiences of the divine, how could I invalidate them? I could not. In the same way the autumn does not invalidate the spring, I could not deny the reality of my youthful faith.



And so it slowly dawned on me that I had lost my belief, not in a spiritual reality, but in the theology we had been brought up with. What I had to face was not that there was no God, but that the concept of God I had previously held, and my understanding of how God interacted with the world and humankind had been a distortion.

It was to be a long and lonely process of shedding the skin of all the old ways of thinking that I felt, through experience, just had to be wrong. I realised I had to unlearn everything and start all over again. I had to find a new understanding, a new language, a new way of thinking about the divine. I remained in the wilderness for many years.

People say we come around, in the end, to a place of simplicity, or rather, a place of spiritual stillness, poised between knowing and unknowing, to a place where no answers are needed, because no questions are asked. We learn to suspend thought, to suspend emotion and to try merely to be in the Presence we seek. I do not know what I mean by 'God". It is not a word I use anymore because it's hung with connotations I find unhelpful, harmful in fact - but I am slowly discovering a deeper spirituality, not dependent on definitions, helped and encouraged by those who have trod the path of contemplation before me.

I am a Quaker now. We worship in silence. No words! People often ask us what Quakers believe. The other day a friend sent me one of those silly badges with slogans. It read "My Karma ran over my Dogma". That will do for now.


Rebecca de Saintonge is a writer, journalist and co-founder of LifeLines Press. Her latest book, One Yellow Door: A memoir of love and loss, faith and infidelity is published by DLT.