Marilyn Hull, October 2016
What was it like to live with a blind man? How do you think life would have been different if John hadn’t lost his sight? Aren’t you kind of lucky that he never saw you getting old?
It is just over a year since John died. At the supermarket, I walk past the Twiglets and his favourite whiskey with a catch in my throat, having dropped them from my shopping list. His computer and scanner are pushed back to the edge of the desk that I now use as mine. Sometimes I pick up one or other of his loved objects that are scattered on windowsills and mantelpieces and remember how he would caress their surfaces – polished wood, etched glass, stone or fossil. On the shelves around me, neatly brailled, are the CDs and discs that fed his passion for music, next to the black boxes which store the hundreds of hours of cassette recordings of his voice notes on books read, books to be written, lectures, letters, reflections. And then the vast digital record that replaced the old technology in later years. His voice is everywhere, when I can bear it.
The account you have read describes a turning point in my life almost as great as had been falling in love. This book is not, for me, an easy read. But it has been a journey whose turnings and strange ways I could never have anticipated. John and I got together in 1975. In August 1980 our first child, Tom, was born exactly two weeks after his final eye operation. Two consultants worked on his eye that day, but the retina was so damaged from previous surgery, with such deep scarring, that they said there was nothing really left to work with. In a few weeks, John had moved from being a working academic, with access to books, lecture notes, all the usual things, to being blind. Two years later, all light sensation had gone. He found himself in the unusual position, even for those registered blind, of being in total, permanent darkness.
Imogen, born in 1973, was the child of John’s sight; Tom was the child of blurred images; Lizzie, Gabriel and Josh, all born after 1981, were the children of his blindness. Amongst the shock and many frustrations of losing his sight in those early years, nothing brought him greater personal pain than not being the kind of Dad he wanted to be. Many of the things that he had experienced so richly in Imogen’s early years he now felt had been stripped away with Tom and Lizzie. He couldn’t gaze at our new baby like I could, in amazement and joy, responding to the thousand little changes in behaviour and personality, or confidently enjoy their earliest steps, knowing he could instantly intervene to prevent them coming to harm. The easygoing fun of day-to-day playing with our young children was now something he had to think about and work at.
In the book, John describes one Christmas Day, I suppose either ’83 or ’84, which neither of us have ever forgotten. In the maelstrom of friends, excited toddlers, clutter and noise John sat in near silence. The sense of his alienation and internal pain became so great that I urged him to go to the office – the campus was only ten minutes walk away – even though it would be completely deserted, and probably cold. This wasn’t said with any rancour. There were plenty of people around to help with the washing up and the children were already tired out. We both knew he had to find a safe space, where he could manage on his own terms rather than trying to enter, inadequately as he saw it, into the life of sighted others. This was the first of many such times. Much later I came to understand that it was in pushing him away that he was able to come back, restored to himself and to me.
But the despairing, nightmare quality of those early days of blindness described in this book did not persist down the years nor did it cast a bleak shadow over the rest of our lives. We muddled along as parents do, and for much of the time we were very happy. John was a person of exceptional energy, an extrovert with a huge sense of fun allied with the attentiveness of the skilled teacher, and these qualities were expressed most strongly in his closest relationships. Mostly we paid little attention to his blindness: we were too absorbed in life, ideas, problems and having fun. At other times we felt rather proud of his inventive adaptations. If I slipped away for a few minutes when we were outside, in a park or on the beach, John would tie a piece of string around a crawling baby’s ankle – he was so afraid of losing one of the children! He was a keen football fan and experimented with jingling balls to help the children develop their early skills. (Tom remembers him later scoring a spectacular goal against him during penalties on a family holiday in France.) He brailled picture books with short notes on each page so he could read aloud to them. He took pleasure in these strategies, but was still envious of his more confident blind friends, especially those who had never seen – one of whom described playing cricket and football out in the street with the other children when he was young, and another who talked of cycling around his village with his brother, without a care in the world. For John, who had lost his sight at the age of forty-five, these were unimaginable skills.
The impact of his sight loss on our lives at the everyday level was immense. The man I fell for was a practical person who enjoyed household chores like cooking, decorating and gardening. We were both working full time and we had taken it for granted that those things would be shared. Blind people can become experts in any imaginable human skill but, in my experience, it takes so much time to relearn one that specialisation is an almost inevitable consequence of suffering a major disability. John invested most of his time into his work, not only because it was joy and delight to him, but because he felt that succeeding in his job was the best focus of his energies. This meant that most of the everyday tasks of running a home fell to me – think of the line of shopping bags brazenly stacked against the wall whose contents he would never have to worry about. And how many times did the children inaccurately assure him they’d put their toys away or eaten those veggies that were deftly tipped into the bin?
John was at pains to point out that he spoke only for himself, not for other blind people, when describing his experience and I feel the same about my experience as his companion. I sense sometimes that people are on the point of asking, but don’t quite like to, didn’t you sacrifice too much of what you wanted to do because of John going blind? I’m aware of the extraordinary lives lived by carers and their loved ones everywhere, often with struggles far beyond ours, but actually I never thought of myself as a carer. The strange co-incidence of John’s last eye operation and the birth of our first child caused such a sudden lurch in our lives that it made certain life choices easier. It was impossible for me to even consider returning to work. I just didn’t think about it. I was in my late twenties, and would spend twelve years mostly occupied with family and children with some part-time sessional teaching as my only paid work. It was a fulfilling time. I enjoy young children and was busy making lasting friendships of great depth and quality in that broad group of people similarly immersed in young parenthood. Later, I spent twenty years or so in primary education and towards the end of John’s life I became head teacher of a school in south Birmingham, something of which he was rather proud. With John it always felt like an equal partnership. He cared for me; I cared for him. The disability didn’t lead to any power imbalance, on either side.
Perhaps the greatest impact of his loss of sight was on going out and getting around. He was a person with endless curiosity and love of detail, and an intellectual demand for facts that sometimes nearly wore me out. We had previously taken for granted the easy mutual noticing of new things that often forms the enchanting backdrop to human relationships (‘look at that’, ‘wow, that’s amazing’ and so on). Now this all had to be mediated by me, his sighted companion. What bits of a building to describe? Its size, period, architectural features, position? He was now less interested in visual elements for their own sake, and more in their role as indicators of things like meaning, purpose and personality. Words had to fill in the endless information normally streamed by sight and that is a lot more effort for both the blind person and their companion. Walking along with him in a city street, being on holiday, or watching a school play could be demanding. I often felt that I had failed to do justice not only to the landscape or event I was attempting to describe, but to John’s understanding of it. But he was forgiving of the clumsy descriptions of his sighted companions and would soon move the conversation on to subjects for which sight was unnecessary. His humour and lightness of spirit meant that being around together was always fun – we held hands as we walked or, on a wintry day, I would tuck my hand in his pocket.
On familiar routes John could happily walk unaided with his stick (being allergic to dogs he never had one), but he often chose to hitch a ride with a sighted companion. A nervous new student might suddenly find herself with a hand tucked under her elbow so that he could glide effortlessly from lecture room to bar. Taken aback perhaps at first, she would soon find herself immersed in deep conversation or cheerful banter. I received many touching letters after John died describing just such encounters. And for our children there was a kind of power-sharing opportunity as they walked with their father. They learned very early on to recognise the right bus, read the boards at airports, figure out timetables.
Blindness didn’t define John. It might be difficult to imagine, having read about the years of near despair described in this book, but he eventually joked about blindness being ‘just a hobby’. In later years he would occasionally write about its ongoing effects; he sometimes agreed to give talks about blindness but mostly didn’t, through lack of time; he had one or two good friends who were also blind. However, the vast majority of his life was lived with those from the world of the sighted with all its uncompromising busyness.
John had an extraordinary capacity for work. He was a teacher with more than fifty-five years experience, a successful academic, a leading thinker in Religious Education and latterly a respected theologian, but he carried his learning lightly and always positioned himself as a learner rather than an expert. ‘Why is it,’ asked a colleague, not long before John’s death, ‘that John seems to have all the time in the world, has always finished on time, has read more than anyone else, has written more, never seems bothered by all there is to do, has such insight?’
The answer is to some extent straightforward: living without sight required John to do fewer things better. He could no longer multi-task. Speeding through tasks or ‘harvesting time’, as he put it, was no longer possible in a body that saw through touch. Deliberation takes over from speed. Imogen wrote after his death of how he would tidy up – ‘the blindness meant that, unlike sighted people, he did not panic at the scale of the mess but would get down on his hands and knees and pick up the first thing his hands came to – What is this? Where does it live? This has been such an important lesson in life. Don’t get overwhelmed by the bigger picture. Break the challenge down into bite-sized chunks.’
This ability to concentrate was felt in other ways. When you were with John you felt his whole attention was focused upon you, what D. H. Lawrence described as ‘a man in his wholeness, wholly attending.’ People often confided in him readily, and were changed because of their meeting. He listened intently, partly because, without being able to see body language, he had to work harder at listening just to hear. And he was never distracted by the delicious tray of nibbles being carried past or the annoying pile of clutter in the corner.
Friends were wonderful, faithful, discreet. John was an easy person to talk to, about anything, and mostly I think their curiosity was easily satisfied. Some comments, not usually from anyone we knew well, cropped up with relative frequency: how do you know which clothes to wear? Don’t you still hope to get your sight back? And the apparently fascinating thought that John would be glad not to see the results of ageing. As though, through blindness, those he loved best would be like the lads and lassies on Keats’ Grecian urn, ‘for ever panting and for ever young’. The answers to these, and many other similar questions, were usually very simple. You don’t need to think too much about matching up shirts and trousers if someone sighted is around who can effortlessly help with that. And when the structure of the eye and its neurological pathways are destroyed it is illogical to wish for cures.
At first I, and those much loved others, remained shadowy but mobile visual memories; later he found he could remember us only through concentrating on familiar photographs; finally, like colours and trees and his own body, we slipped away. By the time this book was originally published in 1990, John no longer referred to something ‘looking like’ anything else; or rather perhaps he had deliberately let go of the concept, which he regarded as a nostalgic hanging on to part of an old life which was now inauthentic. He was now deeply immersed in a world whose fundamental categories of being were shaped differently from my own. It was hard to accept. I had to learn to be invisible. I had to let him walk away, in this and other respects, into a world where I could not follow. Gradually I learned to accept that if it no longer mattered to him what I looked like, there it was. If a stranger could know something of our own children in an instant of first meeting that he would never know, so be it. Of course there was the odd occasion when I liked to remind him that I wasn’t looking half bad for my age, or that one or other of the kids looked fantastic, all dressed up for their prom. He was gently appreciative, but in our world these comments no longer held much meaning.
Something had been lost; but much remained. What was important was not to cling on in a futile way to what had mattered before. We could no longer exchange the wry smile, the understanding glance, the moment of exasperation, the deep gaze of love. But we had the subtlety and complexity of our voices. And we had touch, with its gentleness, but also its crudity. These more allusive senses were what remained. Our worlds had shifted apart and our daily work was to create a new whole that would have its own integrity.
I learnt to stare back very directly at strange looks in restaurants – funny how fascinating some people still find it to see someone walking with a cane. I never answered if in his presence someone asked me what John would like, as they so often did. I adopted an air of studied nonchalance when waiting for him outside Gents toilets. Financially secure, socially, and in all the contexts of life that mattered to us, we never felt left out in any important sense. And what did it matter if he went to work in odd socks?
The deeper question upon which our relationship turned and which John latterly addressed in his writings was: ‘Can the blind and the sighted understand one another? Can the young understand the old? Can the rich understand the poor?’ He believed that our humanity rests upon our ability to unite across different worlds of experience. John’s description of what it is like to be profoundly blind indicates a fundamental re-ordering of the whole consciousness. Such an experience underpins the great cracks and opportunities of our humanity: disability, gender, poverty.
The greatest of the gifts John felt he received from losing his sight was the experience of marginalisation and hence his passion for justice. Losing his sight gave a middle-class, well-educated, white male in an élite job a searing experience of falling out of the normative world, or rather finding himself wandering around at its edges. In the last eleven years of his life, John spent a great deal of time working and teaching about issues of justice and peace. He was an active campaigner against nuclear arms, particularly Trident, and drone warfare. He participated in the early development of the Inclusive Church, an ecumenical organisation that seeks to wake the church up to its responsibilities regarding sexuality, disability, mental health and race. He was outspoken, attacking both the Bible and church tradition on disability and then re-working a theology of blindness. He called for the church to stand with those who are marginalised.
John believed that a central challenge for our humanity is to take courage and recognise differences for what they really are, and not try to minimise them. This is what John gave to me. The courage to live with him, in worlds that were in some deep respects different, but out of which grew so much, much more.
Three months after his eightieth birthday John died. In the end it happened quickly. We had just returned from a week’s holiday with Imogen and her family. John was in great spirits and eager to get back to work. He enjoyed a peaceful evening of reading and listening to music in his study and at around 10.30 he went up to bed. About five minutes later I heard a terrible cry and a crash. I rushed to the bottom of the stairs where he lay unconscious.
Afterwards, in A and E, we talked about what had happened – in all the years of sightlessness he had never fallen when alone, only once or twice when being led by a sighted person who had lost concentration. He couldn’t really remember how he had come to fall, and thought he might have had a moment’s dizziness.
He had eight fractures across six ribs. The clinical challenge would now be to keep him breathing despite the pain and immobility in order to avoid pneumonia.
We both knew that his life was in danger. From earliest infancy he had suffered from serious asthma and by the time we met, his lung capacity was already badly diminished. Many times I had watched him painfully steadying himself through the panic of an asthma attack by carefully counting as it mounted and subsided. I wondered how he could possibly find the calmness to combat the intense feelings of claustrophobia caused by the double effect of blindness and asthma.
In August 2012 he was diagnosed with severe COPD (Chronic Obstructive Pulmonary Disease) for which there is no cure. We knew that he would probably not live for many more years and that any serious trauma, infection or illness would very likely kill him; or, worst of all, that he might end up being pushed around in a wheelchair, attached to oxygen, dying slowly and unable to work or teach.
We didn’t dwell on the diagnosis, but in a kind of way I suppose you might say we were prepared. Indeed, occasionally in a quiet moment John tried to explain to a close friend who asked after his health that actually he was pretty ill and might not be much longer for this world. The response to this was polite incredulity because he remained so intellectually alive, so full of ideas and commitment, so strong in his voice, with his huge laugh, that no one ever believed his age, let alone his true state of health.
After appearing to stabilise for a couple of days, John’s condition suddenly deteriorated on the third day. Pneumonia set in. Faster than the doctors were managing to get a grip of the situation his systems collapsed one by one. Our children tried to return to the hospital, but in the end only two managed to get there. He died in my arms, held by Lizzie and squeezing Joshua’s hand.
*
Writing about the person you loved after they have died is a strange experience. Out of the vast bank of memories, you have to decide which bits to mention and which to leave out, all the while knowing there will be no right of reply. Trying to convey just what a brilliant human being John was without making him sound like the saint he definitely was not: the exasperating stubbornness; the Australian directness which wincingly failed to understand my English restraint; the reluctance to dance. Yet above all, remembering what came through time after time in letters and messages I have received in the past year. Astonishingly consistently, whether from those who had known him a lifetime or had only met him once, they testify to his humour, warmth, humility and attentiveness to others.
Listening to all five adult children’s tributes to their father at his funeral in the summer of 2015, there was all the tender ordinariness of love, of a sadness that can begin the letting go because nothing vitally important had been left unsaid. Tom remembered a stormy boat trip on a family holiday in Yugoslavia before it descended into war, ‘We were pitching and rolling and water was coming into the boat. Around us tourists were shouting and vomiting over the sides. But Dad was absolutely loving it. He put his arm around my shoulder and I felt no fear. We were roaring with laughter, yelling “Go faster, go faster!”’ Josh spoke of how music brought them all together, ‘for the countless hours you spent listening to me practise the trombone, thank you. And believe me, I also spent many hours listening to you practise the piano – you and Lee [the piano teacher] cracking up in those morning piano lessons, with “Frosty the Snowman” tinkering up through the floorboards.’ Lizzie remembered his story-telling, ‘bedtime shorts about Tarzan’s dog (Little Botty Bot Bot) to the legendary “Daddy’s House of Horror”, an annual event for the local kids at Halloween’. She thanked him above all for ‘the courage to think critically and not to settle comfortably into any single perspective of the world.’
I leave it to Gabriel, our middle son and himself now a father, to have the last word. For those who knew John, or who meet him in this book, I think this speaks for us all:
‘I will think of Dad every time it rains.’