We first knew something was wrong in November 2014, when we were staying at Gladstone’s Library in Flintshire. On our first morning, Marilyn woke with a sharp pain down her left arm. I was making tea. I came back to the bed and touched her wrist, gently, to ask where it hurt, and she called out in anguish. She gave such a sharp cry that I couldn’t quite believe the sound was coming from her.
Marilyn wondered if it was the result of a recent flu jab. The pain went up to her shoulder and down her left leg. We decided that it would be better to get back home to Edinburgh.
Marilyn saw a doctor and, although the soreness eased, she was thrown by the inexplicable speed of its arrival.
Over the next few years there were what doctors explained away as ‘the aches and pains of ageing’: tiredness, moments of numbness, a weakening in the wrists and arms. Marilyn found it hard to twist the tops off jam jars. She complained that the saucepans had become unwieldy.
Soon, there were other issues: oedema in the right ankle, a watery eye, and a pain in her leg that reminded us of the joke I’d made at my sister’s wedding: ‘Our mother has just had a hip replacement operation. We did wonder whether it might have been simpler to keep the hip and replace the rest of her.’ In those days illness came and went; we could laugh about it or try to find a solution. Marilyn continued to work, producing and directing for Radio 4, voiceovers for an animation series, a stage musical about Dusty Springfield. We worked on three of my plays together.
She had always had amazing energy but started to tire. ‘It’s not surprising,’ I said, ‘you never stop.’ Our daughter Charlotte and my stepdaughter Rosie asked if she had thought about taking it easier, but no one dared suggest the word ‘retirement’, and in 2017 we celebrated her 70th birthday in Venice. Soon after, Charlotte gave birth to a baby girl. At the time, we didn’t realise that things could not possibly be this good.
Marilyn and I first met in 1983; I was working in the BBC Radio Drama Script Unit in London. She was a radio drama producer in Edinburgh and was going to work in television; they needed someone to replace her and I applied.
As we sat next to each other on a sofa in a BBC script meeting, I was struck by how extraordinarily pale she was. She had the gentlest of voices and she smelled of hyacinth, jasmine and coriander, the perfume I later came to know as Mystère de Rochas.
‘Who was that pale woman?’ I asked my boss afterwards.
‘Why? Are you interested?’
‘No, it’s just that… her skin is like milk.’
After I got the job, my boss thought it would be a good idea if we all met for lunch. Marilyn was very late and arrived in a red summer coat over a gingham dress, with a chunky fake-pearl necklace. She kissed me hello. ‘You sat next to me on that grey sofa [once]. Shall we sit next to each other now? I can let you in on all the things they won’t have dared to tell you.’
Who is this extraordinary woman? I thought, astonished by the velocity of her character. And then, almost immediately: I wonder if she has a boyfriend?
I was 24. She was 11 years older, divorced, and a single mother to Rosie, who was five. She told me that she had ‘completely given up on men’, but I could phone her for a chat about work and we could, perhaps, go to a film.
Marilyn chose Rumble Fish, Francis Ford Coppola’s now-cult film about gangs in Oklahoma. But I wanted to walk out. This was going to be 94 minutes I could have spent talking to Marilyn. ‘I never walk out of films,’ she told me, but after I had let out an audible, ‘Oh, for God’s sake,’ she agreed to, and we went for pizza and a bottle of Valpolicella. I explained why I had hated the film and she told me I had missed the point. In the rom-com of our lives, this was the first argument.
Over the next few weeks, we saw each other several times. I babysat Rosie, I made my famous minestrone soup, and brought it round to her house where we talked about my production of Three Sisters. After the first night, I received a card from her signed: ‘With love as always’.
I started a notebook and wrote my thoughts about her, little memories, and copied out Masha’s confession in Three Sisters: ‘I’m in love – all right, so that’s my fate.’
At the time my father was Archbishop of Canterbury and the idea of my marrying a woman 11 years older, a divorced single parent, would have sent my parents into a spin.
Marilyn said she didn’t want to ruin me (although I was perfectly prepared to be ruined if it meant being with her). She insisted that there was no chance of a relationship. We were friends. She encouraged me to find a ‘proper girlfriend’, and I did meet an extraordinarily attractive ballerina but mostly I’d sit there thinking, ‘I wish I was with Marilyn.’
One day Marilyn went on a course at BBC Elstree, and I gave her a bottle of Mystère de Rochas. All I wanted was to see her again. We spoke on the phone and acknowledged that we missed each other madly. I told her that I couldn’t imagine a life without her but perhaps we didn’t have to do everything straight away. Then I got this message: ‘I think you are a wonderful and extraordinary man – the warmest I have ever known. I want you to believe how happy you make me – it’s like being given a present of something you thought you’d lost. Also, the thing is, I fancy you rotten. Can anything be done about this?’
She told me that she was getting the sleeper back from London. She would be exhausted but I could come round on Saturday afternoon.
I brought her jonquils and honey and she opened the door and was so sleepy that I thought she had forgotten that I was coming, but then she smiled and made Earl Grey tea in her black velvet dressing gown with nothing underneath, and said, ‘Oh for goodness’ sake, come to bed.’
That was how it began.
A couple of years before Marilyn’s 70th birthday, we bought a house in the fishing village of Saint Monans in the East Neuk of Fife, not far from where Marilyn was born. It was 2016 and we were anticipating a long and happy retirement.
For a while we had that happiness – then came the fall. A slip on a wet stone in August 2019. (‘My foot just gave way.’) Then another on her birthday in November. (‘I must have tripped on the leg of a sofa.’) Then she fell in the garden but didn’t tell me until there was another in the living room.
Doctors told us it was probably sciatica. She had physiotherapy but her legs and hips did not respond as they should have done. Every time there was a new symptom, she went to the GP. He referred her to what he called a ‘one-stop shop’, a polyclinic for geriatric patients. They thought she was just getting old. There were no appointments available for three months.
At Christmas, Marilyn could not lift the turkey out of the oven. She felt tired and heavy and took more and more painkillers. She never told us how many. They were hidden by her side of the bed, in her handbag, in make-up pouches.
Eventually, at the one-stop shop, a doctor tested Marilyn’s reflexes and was puzzled by a variety of symptoms that ‘didn’t add up’. [In particular], a weakness in her voice.
‘Don’t worry,’ the doctor told us. ‘It’s not going to get worse.’ But it did.
Marilyn was a singer. I had always thought she had the most beautiful voice. Now, though, [her voice] was quiet and hesitant; I could tell that she was frightened.
There was a neurologist we were told to see [in Edinburgh] but he wasn’t available for five months. We tried to go privately but, even then, it was a 10-week wait. I spoke to my friend Ali, a private doctor in London, who told me to come down south. She would get a diagnosis immediately. ‘Just throw money at it. What matters more than this?’
But Marilyn could not face the journey. Soon food became difficult to chew. She asked Charlotte to cut up her green beans for her at one Sunday lunch because she said she couldn’t face big mouthfuls.
We pushed for more tests, then the doctor finally ended a sentence with the words that no one had ever dared to say out loud. His voice was gentle, but to me it sounded as if he spoke entirely in capital letters. MOTOR NEURONE DISEASE.
These are the three words doctors most dread having to say. MND is the degeneration of specialised nerve cells in the brain and spinal cord (motor neurones) which transmit the electrical signals to muscles for movement. It is a form of slow paralysis. There is no treatment; only the drug Riluzole, which can prolong life by, on average, three months.
Apart from that, there is nothing to be done. Paralysis takes hold until you are no longer able to speak, move, eat, drink, or, eventually, breathe. Thickening saliva makes the patient prone to choking.
In the UK, the individual lifetime risk of getting MND is one in 300 and, according to a recent study, this is increasing. No one seems to know why, despite the millions spent on research.
The doctor tried to reassure us that it wasn’t necessarily MND, so we tried hoping that it was a brain tumour. ‘Imagine hoping for a brain tumour,’ Marilyn said. The best diagnostic tool for MND was an electromagnetic test (EMT) and there was another lengthy wait.
Marilyn now had immense difficulty walking, couldn’t drive and was scared of stairs. One day, when talk of a new virus, Covid-19, was first in the news, Ali phoned to check how things were going. ‘For God’s sake,’ she said, ‘come down to London while you still can. I can find you a neurologist in 24 hours.’ And so in February 2020, we found ourselves at the London Hospital of Neurology for an EMT. Two days later a specialist there confirmed the diagnosis.
There was one question we still had to ask.
‘How long have we got?’
‘It’s impossible to say,’ Ali admitted when I phoned her. ‘Every case is different; but you can look up the average.’
MND is called ‘the thousand-day disease’, because that’s the average life expectancy after diagnosis. Marilyn’s diagnosis seemed to have taken ages, and what counted as the first symptoms? The pain at Gladstone’s Library? The first fall?
‘Two years?’ I asked.
‘If you’re lucky,’ said Ali.
‘It says six months to two years. Could it be as short as six months?’
‘If you’re lucky,’ Ali said again, meaning that brevity would cut short the distress. ‘It’s horrible. I am so sorry.’
In the end, it was five months and 22 days. In those final months, our friends wanted to visit but the advantage of a pandemic was that we could say, ‘No visitors.’ Marilyn couldn’t bear the idea of people witnessing her decline. She could still send little texts and emails but speaking on the phone was hopeless. She ran out of breath.
‘This is your opportunity,’ one of Marilyn’s carers said to me, ‘to prove how much you love your wife.’ Bloody hell, I thought. Soon someone will be telling me that this has all been ‘a blessing in disguise’. But I said ‘thank you’ because she was right in the sense that it was a way of showing how much we loved her – not through bold romantic declarations but the slow, patient acts of care.
Rosie, Charlotte and I did not talk about how we were feeling. At the same time, we tried to anticipate each stage of the illness. Our friends brought us beautifully constructed soups, bologneses, a neighbour blended a different smoothie every day for five months. These simple acts of kindness we will never forget. We received so many flowers that I had to ask people to stop. Our home looked like a crematorium. ‘I haven’t died yet,’ Marilyn said as I wheeled her back to the bedroom.
One night, when she could still speak, she said to me in the darkness: ‘I don’t mind if you marry again.’
‘You do,’ I said.
‘No, I don’t. And I know you will.’
It was inconceivable to think of being with anyone else, or for anything ever to matter more than this conversation. I leant over and kissed her. I wanted to say: ‘If I ever love anyone again then most of what they love in me, will be you.’ But I couldn’t say this because I could already hear her saying, ‘Well, that is of no comfort to me.’
In the end I said goodbye four times. The first two were frightened brevities, ‘just in case’ farewells. The third was more urgent. I hadn’t prepared anything. But as she lay beside me, breathing erratically, I told her that I would look after the girls, and she had given us so much love that it would sustain all our futures. Then, just as I was hitting full flight, telling her how she would always be a part of me, she said, quietly, ‘Enough.’
It was probably that she couldn’t bear to hear all this. Perhaps it was also to spare me. I tried to tell her that she didn’t have to keep on fighting. I couldn’t take in that she had four or five days of fight still left in her, even when she could no longer eat or drink. But on the last evening I knew that we were approaching the end because the carers left in tears.
The girls performed their nightly ritual of rubbing her favourite lavender-scented cream into her sore arms, and Charlotte read her Wordsworth’s Daffodils. They lit a candle and kissed her goodnight.
Then Marilyn and I were alone. There were no more words. I played Andreas Scholl singing Che Farò from Gluck’s Orfeo, that great desperate lament as Orpheus sings of his love for Eurydice, and how he cannot bear to live without her, and I promised Marilyn that she would always be with me. I fell asleep. And then, in the darkest hours, as Marilyn slept beside me, with the whole house quiet, her ragged breathing stopped.
My wife, Marilyn Imrie, died of motor neurone disease at 5am on August 21, 2020. She was 72. She was a drama director, a singer and an artist: mother to two girls, wife, sister, aunt and grandmother. We had 35 years together.
She was a woman who was an effervescent force for good, a person who thought the best of people, embraced adventure and delighted in greeting her friends: ‘Hello, Gorgeousness! Tell me good things!’
After losing her, everything became strange and dream-like. There didn’t seem to be any point to anything I was doing. I found a card Marilyn had given me, a cutout of a ship’s anchor. On the back she had written: ‘You are my soul’s anchor.’ Now I was anchorless.
One day my two-year-old granddaughter looked at a picture of Marilyn taken when she was 40 and smiling: ‘Do you want her to come back?’
I said I did.
‘But she can’t,’ Bea told me. ‘She died.’
‘I know,’ I said. ‘It’s very sad.’
She put her hand to her chest and said, ‘Grandma in our hearts.’
I had never lived on my own before. Sometimes, I’d find myself doing stupid little things (setting out two cups for coffee in the morning), or remembering that Marilyn always used to accuse me of never putting back the bathmat – well, I’m certainly putting it back now.
Perhaps I could go on living, I thought, by pretending she wasn’t dead? She was away at work, or staying with friends. But after a while, I thought, ‘that’s enough of that’.
I considered therapy but the last time I had been, a man in a bow tie charged me £360 for a session in which he told me that I reminded him of Stephen Fry. And so I developed an alternative therapy of having one phone call a day at six o’clock with a good friend.
I deliberately talked to people who were busy and cheerful. I tried out recipes for ‘one-pan wonders’. On Sunday nights I had scrambled eggs with chives on toast as we had always done. It seemed to mark the end of the week. Now it might as well have been the end of the world.
I forced myself to keep the house tidy and engaged in therapeutic cleaning and angry hoovering. I polished my shoes and put on my best outfits as Marilyn would have done. I changed the bed linen and sprayed our bedroom with her perfume. I tried to imagine Marilyn encouraging me and telling me that she was still with me. But I missed simple things like watching television together. We often put on cosy crime to escape the strange news agenda of terror. Whenever we turned on to Poirot or Midsomer Murders, Marilyn would provide a running commentary. She always anticipated the twist, spotted the murderer and called her spoilers out loud. ‘Oh God, it’ll be the doctor again… It’s Anna Chancellor. It has to be. Otherwise, she wouldn’t be in it.’
We also liked the ridiculousness of eating ready-meals to watch MasterChef and heckling the contestants: ‘Life’s too short for jewelled Persian rice!’ We watched Gardeners’ World and would shout at Monty Don as he described his Paradise Gardens: ‘Try doing that in Fife, mate!’
The night after Marilyn died, I watched the programme with Rosie and Charlotte. It featured an 87-year-old man who was sure he had ‘10 more years of gardening still in him’ and we all shouted out at the same time: ‘Oh f--- off, you b-----d.’
On these days of grief and anger, I was filled with fury. I also realised that the ‘stages of grief’ – shock and denial, pain and guilt, anger and bargaining, depression, reconstruction, acceptance and even hope – were not ‘stages’ at all. They could all happen on the same day. Like the weather. You never quite knew what you were going to get next.
There was also the problem of insomnia. In bed I was constantly turning to my left and finding no one there. In the middle of the night I found myself shopping online for things I didn’t need: sushi knives, ear-wax removers, a shiny silver jacket made out of copper wiring. I convinced myself Marilyn would say, ‘Why not?’ even though I couldn’t hear her voice any more.
Then, one day, as I was driving, I was caught up by roadworks and stuck behind a van advertising mobility scooters. For God’s sake, I thought. I let out a sigh and suddenly there she was, sitting beside me again, saying what she always said when I was tense: ‘Would you like a Softmint?’
Her voice had come back, clear and true, and she was with me once more. Perhaps this was the beginning of some kind of recovery?
Looking back, Marilyn didn’t seem keen on my future life without her. She was furious about not being able to spend more time as a grandmother. She was unspeakably depressed by the inevitability of death. There was nothing I could do. The greatest tragedy was to see someone so optimistic, a woman who could change the mood of a room just by walking into it, brought into such despair.
So, my task now is to live for her, to try to continue a love; to incorporate her velocity of character and all that was best in her, celebrating the fact that we loved each other for as long as we did.
Abridged extract from Tell Me Good Things: On Love, Death and Marriage, by James Runcie. To order from Telegraph Books for £12.99, call 0844 871 1515 or visit books.telegraph.co.uk
For advice and support if you or your family are affected by motor neurone disease, contact the MND Association, The Brain Charity or Challenging MND
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