StemCell Therapy

Marilyn Hull Like any bereavement, you get the anger and loss. The change in your life is so immense. Photograph: Dave Evitts/Guardian

Two wildly disparate films could be said to frame Marilyn Hulls life with her husband, John. Theres the extraordinary documentary Notes on Blindness, an intimate, highly inventive rendition of Johns experience of losing all vision in his 40s. And then there is the romantic epic Gone with the Wind, which they saw on their first date in 1975.

John Hull, a professor of theology, writer and campaigner, had been Marilyns university tutor when she was training to be a teacher in Birmingham. They lost touch but met again through his Amnesty branch and he asked her if shed like to see a movie. Recalling that trip to the cinema, Marilyn has to suppress rising tears. He had been a brilliant teacher, funny, warm, supportive, inspiring, she says. But he was married with a child, and I was not the type to fall for married men 17 years older than me. But I sensed an enormous vulnerability and a sadness in him. We got out of my car, he took my arm and I realised then that he fancied me. I was surprised at myself and my feelings. I dont know exactly what I felt, but I fell in love between the car park and the cinema door, and that never changed. Itwas cataclysmic.

Marilyn and John, who had a daughter from his first marriage, went on to have four children together. Both were passionately opposed to nuclear proliferation while John was also a key intellectual figure in theological education and the development of multi-faith thinking. He was a campaigner for social justice, right up until his death from pneumonia in July 2015.

For Marilyn, who had only recently retired as a headteacher, his death was devastating and she is still in mourning. She chokes up at odd moments in the supermarket realising that the cheese footballs he alone loved eating no longer need to go in the shopping-basket. She finds it almost impossible to watch Notes on Blindness, completed after his death, without crying.

The film, which has been nominated for three Baftas, draws on Johns audio diary from the first years of his total blindness. There were 16 hours of recordings, published as Touching the Rock in 1990. Oliver Sacks described it as The most extraordinary, precise, deep and beautiful account of blindness I have ever read. Its a book that not only gives a sighted reader vivid insights into the experience of becoming totally blind and learning how to navigate the world anew through sound, memory and touch, but also describes Johns psychological and spiritual struggle to accept what had happened to him.

The filmmakers lip-synched the recordings of Marilyn and Johns voices with two actors playing the couple during the years when John was struggling to come to terms with blindness. It has been exhilarating but emotionally exhausting for her to hear Johns voice throughout the film. I loved seeing the film in French. It was dubbed and it enabled me to get some distance on it.

When the couple met, John had already lost his sight in one eye because of a botched cataract treatment in his childhood in the Australian outback. He had never let his limited vision get in the way of his life and career but when his other eye failed and he became totally blind, it was devastating.

Like any bereavement, you get the anger and loss. The change in your life is so immense, says Marilyn.

In 1980, just days before the birth of their first child, Tom, the couple were told that Johns sight could not be saved. Marilyn remembers John being brought in his pyjamas from the eye hospital to visit her in the maternity ward. Friends and families didnt know whether to congratulate us or commiserate. We had a new baby, and had to work out brailling, white canes, all of that at the same time. That was seared for ever, that strange congruence in life.

Initially, John refused help simply because he was too busy with his work to go on courses. We lived at such a pace. And he couldnt have a dog because he had asthma. But he was so inventive and such a loving, attentive father he would tie a string around his foot and attach it to a crawling baby so he knew where they were. He was terribly independent. He would go out dragging the pushchair behind him to get somewhere and I would think, Oh my God, I hope they both come back safely!

She remembers terrible periods when he distanced himself completely. Not being able to see the children was very painful for him. I was so aware that anyone walking into our house could know our children in ways that John would never know them.

She would suggest that he go to his office and work in familiar and quiet surroundings, and come back when he had centred himself again. Life with John was mainly very joyful, but there were despairing, difficult times when I would wonder whether his blindness would fundamentally change our relationship.

During the early years of his blindness, John struggled to reconcile his dreams richly full of vivid images and his waking life in total darkness. In the book and the film, he describes how deeply troubling it was to accept that his visual memories were slipping away and how he felt it vital to live in a new reality rather than dwell in nostalgia. Eventually, he came to see blindness as a dark, paradoxical gift something people ask Marilyn to explain.

They say, Wouldnt you have loved him to have got his sight back? Of course, of course I would. But the gift is living with what is, rather than dwelling with some other imagined existence. He felt the miracle was renewed consciousness, the idea that you can live with integrity and clarity in what has become in many ways a very different world.

The film reconstructs the nightmarish time when they went to Australia with their young children to stay with Johns parents. Being in his childhood landscape with his mother and father but unable to see them was traumatising. It was the turning point when he was triggered into that new consciousness, when he decided, Right, I am not going to live in the world of images. I am going to live in a world where the whole category of appearance is meaningless to me. That photograph which I thought I would have forever in my heart, I have to forget. And if you love someone you have to say, Yes, of course I understand and respect that; you must go into that other world where I cannot follow. It was so hard not being able to alleviate the suffering, that he had to work through it all on his own.

The couple got back on the plane and just said to each other, We will never be able to go back. The time in Australia had not only tormented him psychologically but also worsened his chronic lung condition.

John was determined to be as independent as possible. He wrote: The moment I sink into passivity, I am done for. He had a relentless desire to get the most out of life but you cant multi-task and rush when you are blind and Marilyn, naturally impatient, realised that she too needed to adjust.

Sometimes with John youd think hed want you to back off; other times youd realise he was irritated because no one had told him the difference between the trifle and the cheese souffle. Not only was he a brilliant teacher at work, but he was also a brilliant teacher for sighted people, so people were comfortable in his presence.

She recalls her own anger though when strangers stared at him. At first Id be so irritated by them. I dont mind children staring, they dont know any better, but youd go into a restaurant and people would stare and stare. Id just stare back. Often people would talk to her in front of him as if he wasnt able to hear and she giggles remembering the time she waited silently beside him at a railway station ticket office until the seller finally asked John directly what he required.

When James Spinney and Peter Middleton first approached the couple in 2010 about making a film based on Johns audiotapes, they were intrigued. Its so counterintuitive, a film about blindness. John was not an attention-seeker but he was an extremely gifted public speaker. And James and Peter were so respectful and were the same age as our children and were so carefulto get it right emotionally. They kept checking with us. By the end youfelt they knew our lives better than we did.

Spinney recalls. Wed travel every few months to record interviews with them, revisiting the audio-cassette recordings that they kept in the years after John became blind. We were conscious that at times this was a painful undertaking. John likened it to reopening an old wound that had long since healed. They approached this with such honesty and generosity, which made the making of the film a very collaborative process. And over time it developed into a friendship, one that we feel very lucky to have had.

Marilyn feels that John would have been intrigued by the finished film and appreciated the innovative versions with enhanced audio descriptions for people with sight loss and the virtual reality companion piece.

But would he want Notes on Blindness to be his sole legacy? No, he was always interested in influencing the churchs political attitude, in his students development and protesting about Trident. Never was there a person who so fitted Dylan Thomas valediction: Do not go gentle into that good night. He was tweeting so ferociously in his final months, it seemed that the political pressures of the world were coming at him like fireworks, he was somebody who with their last breath was saying, What more can we do in this world?

It is less than two years since Johns death, and Marilyn still instinctively reaches her hand across the bed when she wakes. When she took his ashes to Australia, she found a photograph from their early days as a couple. Id never seen it before. I thought, this is the most important photograph of my life and I didnt know it existed. Its rare to get photos of people looking at each other intensely, staring into each others eyes, deeply in love. Its an intimate moment and theres usually nobody there to take it. Its just a tiny snap and I cannot publish it anywhere. Its that moment of beholding that we both lost.

Notes on Blindness will be on BBC4 on 16 February, 9pm. Notes on Blindness: A journey through the dark is published by Profile, 8.99. The VR companion film is free to get

Read the original post:
How my husband saw blindness as a 'dark, paradoxical gift' - The Guardian

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