Andrew Rosenfeld was a fit and healthy 51-year-old businessman when he was diagnosed with stage 4 lung cancer. He was dead 13 months later. His wife, Juliet, a psychotherapist, was blindsided. Now she has written a book that reveals the devastation of grief – and what it's like to survive it. By Louise France.
Juliet Rosenfeld started writing her book, The State of Disbelief, on a hospital chair beside the bed where her husband of seven months would die three days later. Outside the window she could see a Connecticut winter snow storm blowing in. The couple had flown to America for cutting-edge immunotherapy treatment, a last-ditch attempt to cure stage 4 lung cancer that had spread. But Juliet knew, had feared for many months but didn't dare say, that her 52-year-old husband, Andrew, was not going to survive. Under the fluorescent lighting, surrounded by nurses, she started writing in a notebook. She was 46.
It sounds bleak, and it was bleak, but the book is not (that's not to say that you won't cry). It is a beautifully written, profoundly moving and immersive account of grief that will bring solace to readers who have been bereaved, and guide anyone who knows them, who feels at a loss how to understand what they're going through. Which pretty much means all of us, at some point in our lives.
Almost exactly five years have passed since Andrew died. We meet in Juliet's book-lined consulting room in north London where she sees patients. She is a psychoanalyst and it is her fascination with Freud, and in particular his paper Mourning and Melancholia, that runs as a theme throughout the book. When she was younger she wanted to be a journalist, "but didn't have the confidence". I'd argue it's her experience both as an analyst, and being in analysis five days a week, that makes her book so powerful – this is someone who is brave enough to delve into her emotional world and its very darkest moments and make some sense of it.
"It took an embarrassingly long time to write, but writing was all I had at the beginning," she recalls. After a day at the coalface of grief, she would go to their bed and write. "There was this urgent need to write it all down. It felt like my thing. And no one had anything to do with it apart from me. And obviously him. Because it was so relentlessly about him." It was like a conversation with a man she couldn't believe had gone.
"Why did I write it? Because I don't think I will ever have that experience again – God, I hope not – and I still think it was the biggest experience of my life, psychically," she says. How does she feel now that her story is being published? There might be some analysts who think she has revealed too much of herself. But she says simply, "If anyone finds it helpful that would be deeply pleasing to me."
Andrew and Juliet had met in 2011 at a Labour Party conference. "We'd both come out of marriages that has gone badly wrong," is how she puts it. Juliet had two young boys, Gus, 9, and Ford, 7, and was near the beginning of her training, having been a civil servant. Andrew was a property developer with a famously strong work ethic and Labour's biggest donor. They were in many respects very different but, "I just remember thinking he was clever. He had a presence. He was very much self-made. I am the opposite – I come from a family of academics. I had never met anyone like him." The relationship seemed like "a second chance. I felt very lucky. We were passionately in love."
When Andrew found a tiny lump in his neck below his ear, Juliet thought it was merely a swollen gland. But one evening, just before Christmas 2013, she received a text from him. "Results back, pls meet me at GP." Then another one a few minutes later. "PLEASE GET HERE." What followed was radiotherapy and chemotherapy, and six months later, what seemed to be the all-clear. They got married. Then almost immediately the cancer returned. Andrew was told his only hope was to fly to America for immunotherapy treatment.
He had the mindset of an entrepreneur – this was a man used to winning deals, even when the odds were perilously low. He convinced himself he could face down the cancer, however rampant it was. But, as it turned out, he was kidding himself.
No words to describe how different life is without him.
— JulietRosenfeld (@julietrosenfeld) February 8, 2017
Andrew Rosenfeld 27.4.62-8.2.15 pic.twitter.com/E4aCnQuQhm
What is striking – and perhaps made Juliet's subsequent grief all the more messy and incomprehensible – was his refusal to admit what might happen. She allowed herself to cry just once in front of him over those 13 months. "He found my getting upset unbearable. The power of his denial was so strong. Somehow I really capitulated with that. I was complicit with him." She thinks now of the likes of Steve Jobs or David Bowie – strong-willed men who also shrouded their diagnosis in secrecy – and wonders if this denial is an alpha male characteristic. "In particular we did not talk about it to each other, which now I find absolutely baffling."
She is careful to say that people experience much worse such as the death of a child, and every bereavement is "idiosyncratic and singular". But for her the grief was almost deranging. She still functioned – looking after her boys, starting work again after four months. I imagine that in person she strove to put up a good front – as she says, "Grief nowadays goes unseen, unchecked." In private she was undone. Her husband was alive in her head – and yet dead. "I remember someone saying after a year, 'This is still so raw for you,' and I would be thinking, I've already done 12 f***ing months of this." Partly, she thinks, she was traumatised, in particular, by Andrew's final minutes in that Connecticut hospital bed. "The death was gruesome. It was a very traumatic event. I've never experienced anything quite like it."
The State of Disbelief prompts us to ask the kind of questions we try to avoid – what does it mean to lose someone? Who owns a life? What do you want for the people left behind? How would you cope with your own diagnosis? At what point do you accept your own mortality? She's turned her anguish into a profound portrayal of what it's like for those of us left behind. I wonder what she'd say to someone waking up today to an empty bed next to them. "Just that eventually something will change," she says. Inspired by Freud, she makes a distinction between all-consuming grief, which in her case lasted around two years, and mourning, which came after.
For two years after Andrew died, she held a party to commemorate the day. "I couldn't think of how to get through it otherwise." Five years on, she's taken down most of the pictures of him. The appalling paradox is that to get over someone, we must gradually forget them. At the height of her grief she thought about him hundreds of times a day. "Now I have difficulty sometimes remembering very ordinary details about him. I think that happens for a reason, some evolutionary reason, to create space to meet someone else." A year ago, after the book was finished, she did indeed meet someone new. "I am very happy. He is a lovely man." she says, sounding surprised – and delighted. "I think I'm lucky."
Book extract: "Grief-stricken, I'd think about him hundreds of times a day"
A week or so after my husband Andrew's death, I took up a strange, secretive, early-morning (and sometimes nightly) routine. I would wake up before my sons, one of whom, the seven-year-old, had installed himself in Andrew's side of the bed. In the corridor next to our bedroom were fitted wardrobes. The left side was where Andrew kept his suits and some jackets. For a month or so, once, or more usually, twice a day, I would get into this wardrobe and sit in the darkness.
There I would inhale the smell of his suits for 10 or 15 minutes at a time. If I did not do it, I felt wrong, deprived, I imagine like a diabetic who has not taken their insulin. At night, once the children were in their beds, I would climb in, at first listening out for one of them to come down a flight of stairs to find me, and then ten minutes or so later, relaxing into the experience of being there, in a place that was only his. However, the strangest and most important element of this to me – at the time – was that in the middle of the suits were two crumpled, white cotton shirts that had been put back, without being laundered, in the wardrobe, I presumed by Andrew, deliberately, for me. He was communicating with me.
I would gently shake one of them off the hanger from my position below it and sniff deeply. I rotated the two of them strictly so as to not run out of the smell in either of them. I would then strip off my pyjama top to put the shirt on and pull the collar up so it touched the base of my skull, rubbing my head on it. Did I lick them? Yes, I think I might have done on occasion. I know I often kissed the fabric, rubbed it on my face. On his collar was his aftershave, on the armpits, his safe, clean scent, and on the cuffs more of it, a little greying on one of them, the dark patch from his Lamy ballpoint on the other. The wardrobe door had to be shut to stop his smell escaping while I sat inside. Sometimes I would sit there wordless, thoughtless; sometimes I found myself crying. However, I felt grateful for this substitute that was nothing like the real thing and yet for short bursts of time calmed the raging confusion in my head about where he had gone. When I heard stirring or had to get my sons up, I would get out, checking that neither of them might see my exit had they happened to come down from the floor where they slept. Then, carefully, I put the shirts back in situ, looking like a normal person, standing busily outside the wardrobe, just straightening the contents up, checking everything was neat and tidy, as he used to do.
I would get into the wardrobe and inhale the smell of his suits for 10 or 15 minutes at a time.
How long did this continue? I can't recall. This sort of thing (what else can I call it?) went on for around 28 months, in many different ways. I now see the experiences as terrible, urgent reckonings with the fact he was dead, and I would never see him again.
Once I was motionless in a chair for several hours, a quadriplegic seizure of an ordinarily functioning body. I could not move, and sat staring out of the window onto our garden. Once I had to stop driving as I was on the wrong side of the road, but could not remember which was the right side. I half-parked the car on the pavement, annoying a woman with a pram, who glared at me. I did not dare try to straighten the car as I could not think how the key turned in the ignition. I just sat there and waited until it passed, not even knowing that this was what I was doing.
Another time, and again in the car, I could not remember which pedal was the accelerator and which the brake. At that moment I was at the top of a steep hill. It was as if I had no mind in those seconds and the realisation of his gone-ness was vastly more consuming than the road hurtling downwards and the tons of metal around me. I remember looking at the sharp green blur of the late-May afternoon and feeling a calm but total dislocation.
With hindsight, I think something like this happened nearly every day, for several hundreds of days after his death; a feeling of abrupt shock, a wallop in my face, a winding in my solar plexus. Bluntly, and from a cognitive perspective, I got used to it – it became a familiar feeling; I began to know, without thinking, that he was gone, in the same way you know that your hand is attached to your wrist or that water comes out of the tap when you turn it on. I began to slowly believe, unconsciously, on a different plane to the conscious mind, that he was never, ever coming back.
The Room Next Door, Andrew said, the morning after the day he had gone to get an ultrasound on his knee and was told instead he had lung cancer. December 20, 2013. He had, as usual, woken early and was sitting up in bed, his iPad on his lap, the Financial Times, Guardian and Times read cover to cover. I lay feeling bruised, mangled, next to him. I had not slept at all.
I listened to his slow, even breathing and heartbeat. I stroked his chest, the skin taut and unblemished, bar the odd mole on his brown skin. I found it incredibly strange from the beginning that there was nothing to see of this uninvited tenant of his body. It's like we're here, and it's normal and the world is still spinning and the bills still need paying and I'm going into the office and yet, none of it matters. It's so f***ing weird. I feel like I am in a different place. Going to Pret a Manger or to fill the car with petrol is completely different, it's nuts … He rubbed my hair, put his palm over my scalp. I mean. How did this f***ing happen?
I patted his legs under the duvet and went to brush my teeth. The monologue continued. He related to the room the steps by which, the evening before, an extremely healthy 51-year-old man had been told he had lung cancer. I'm a sportsman, a scratch golfer, a non-smoker, a healthy eater, I barely drink, I don't … I don't understand. He looked straight ahead, scratching the top of his shaven head, and then banged the iPad down on the floor beside him. I just don't get it … I …
Then I heard him say, It's like we're in a place next door to normal life. The Room Next Door. The Room Next Door. His phrase. This is where you go when you have a serious illness. Of course, we knew we were not alone – we knew the statistics; everyone does. There are hundreds of thousands of people walking in and out of this room, then back into life, every day. Yet the nature of The Room Next Door means you are alone, in a throng of others who you are with but don't meet. A strange new place where death becomes something real, and possible.
We would have the weekend to get through, followed by a thromboscopy on Christmas Eve.
But I saw from the beginning, from that morning, when we lay together in that bed, that this was his illness, and no one else's. He talked about "we", as always, but he would over the next 48 hours tell me how he was going to run and manage this disease as his own, as carefully and determinedly as he would run one of his deals. He had a plan. No interference would be allowed.
Why did we not talk about his death? I think he was embarrassed about the ultimate revealing act.
As if he had been thinking this through for several days, he explained the following to me. That it was not to be discussed outside our immediate families and four or five friends. And that was it, to begin with. More for my sake than his, as he told me. There's no point. I'm going to get through it. No one is to know.
Of course. And I did understand. No one else was to know. I also knew it was a mistake. It almost always is, because of the complicity that it requires of those who love the sufferer to pretend that everything is going to be all right.
The denial that began with Andrew's wish not to tell anyone he had a serious cancer was contagious, compulsive and became increasingly pathological between us. It would lead to terrible damage that could have been avoided. The more coherent and collusive we became, the more his variation of lung cancer (that has still killed everyone whose lungs it has nested in) became something we had under control and could conquer. He didn't conform to the normal statistics, he was superhuman and he and I would have 30 years of life left together.
Before he was ill, I frequently heard him say to people, We decide everything together, we love to. And for me, too, this was true. We loved the fact we needed no one but each other. We were quite omnipotent, I see that now, as good couples often are. Yet the balance had started to shift.
Now I believe that every doctor we met in the first six months was so intimidated by my husband that they could not face telling him the facts. I never did disclose to Andrew that I had developed a habit of googling stories of people with lung cancer and discovered that it was not ever curable. He wanted to manipulate me to think the way he insisted on thinking, and I fell in with this wish.
He also split off the idea that the cancer might not go away, might be untreatable. Terminal. He denied the thought. And so death … death. This remained an unthinkable and obscene concept for us both during the 14 months. It became as unthinkable a thought as your parents having sex to make you, or as a parent yourself, wanting to murder your own child.
I woke up terrified one night. By this point, the radiotherapy and chemotherapy treatment had long ended. It was October and a storm was threatening. We were in bed early, both of us tired and falling quickly into silence, holding hands and me listening for his steady exhalation before losing consciousness myself, a habit that had become essential to my own sleep. That night, though, I woke with a falling feeling.
Alongside us now, as well as the cancer separating us, were a series of silent, invisible impositions that only we could see. Something deeply buried and repressed had woken me up to reality from the depths of sleep. He hugged me tightly.
It will be all right, nothing bad is going to happen. I am the exception to the rule. You know. We know that. I love you. I will never ever leave you. I have found you, and you have found me. This is it. No one is taking us away from each other.
I felt his kiss on my nose, and nodded, by then lying with my back to him, his arms solid around me. He sounded like someone lying to his mistress.
His death was sudden and unanticipated, early on Sunday, February 8, 2015. Today I cannot reconcile Andrew's death with his life. The chaos that ensued, the squalor, the indignity, the loss of control, the lack of planning. This was not Andrew. Forensic, quiet, methodical, calculating, charming, collected, unhurried. Cool. He was self-contained and in control, always. Where there is doubt, let there be none. His sweet mottos. Don't worry, everything will be fine. Now I think, why did we not talk about his death? I still only have hypotheses. One is that he was embarrassed about what it would feel like to die. The ultimate revealing, intimate physical act.
The impossible thought of dying when you don't want to, when you are not ready, and as it will transpire, when you least expect it, unprepared, in front of your wife, and others you will never meet, incomparable humiliation.
He died at 5.35am. His death was not a going quietly; there were no eye-locked goodbyes, no hand holding, no stroking skin, no kisses, no drifting into a long sleep. I did not tell anyone but my mother what I saw for several months. I felt both guilty and angry that I was left in sole charge of this knowledge. We stood for the minutes while he was worked on, and this, the end of his life, will not leave me. I wish it could be unseen. All this would have to be thought through carefully in the months to come. My response to it and how I dealt with it I have tried to process, and yet still it makes little sense. I can spot trauma in my patients but it was harder to see in myself.
Something enormous and momentous had come into that room, minutes before, onto Andrew's bed, and taken him over as he struggled to breathe. In those last seconds, I felt what Freud termed "the death instinct" as a presence in the room. A death instinct, which is to lead organic life back into the inorganic state. He had gone from being alive to being dead and this was the only way I could understand it. Death is impossible to comprehend. I felt it like an unimaginably immense, roaring bearing of some sort, coming to take him away, leaving him and everyone around him utterly impotent. Six hours before, he had been alive, warm, brown-eyed, handsome, breathing, looking at me. Now he was dead. How can a human being make sense of this?
I left the hospital 25 minutes later. This is how it ended.
In the first two years after Andrew died I was going here and there, backwards and forwards, but not really moving. I kept on getting stuck. There were months when I had nothing to write or say. My mind was like a suitcase packed full of dirty clothes after a holiday that I carried everywhere with me, that I could not put down. I was full of Andrew, all the time. I thought about him hundreds of times a day; our stair carpet would remind me of how he ran down it, a bottle of French red wine would make me think of him, an entire street was him, a white tulip, a car, a breed of dog, a man's coat getting into a taxi. Bond Street. Lacoste shirts. Anything Jewish. Tony Blair. Any tall building. Winston Churchill. An actor he liked. The Masters Cup. Game theory. Starbucks. Hot chocolate. Salad cream. Tottenham Hotspur. It was exhausting. All progress was halted by his death. I was totally immobilised.
Grief was like living with a continuous voiding of my mind, like a sudden amnesia, what skiers call a wipeout – of everything but the fact that I would never see him again. Grief, I now see, changes only with agonising, maddening stealth. When it chooses to release you, you are let up for a little light and air, out of the terrorist's lair, to see that others are moving on while you remain lassoed tight to your lost person, struggling not to be taken down with them, but unsure where else there is to go, and with no sense that anything will ever change.
On a good day now, I think of him perhaps 20, 30 times. It may sound a lot, but it is nothing compared to what it was. It was every minute of every hour I was awake for many months, more in the first six months, most of every minute. He was constantly in my head, dead, angry, beseeching. That part seems largely if not entirely over, and this is an enormous relief. But I still think about him – he still, daily, forces his way in. I realise that I want to be in charge of when I think about him, rather than the other way round. Maybe one day this will be how it is.
In the summer of 2018, my sons and I move house. One day, as I am unpacking, I see the white shirts. Unwashed still. I have all but forgotten my crazed love affair with these two cotton garments until this moment. I grab them both and smell them quickly everywhere, everywhere I used to, the wrists, under the arms, the collar, the chest. There is nothing.
I feel an intense draw towards him, impossible to describe as I shut the wardrobe and feel tears welling. As the feeling rises, I finally see his face fully, staring at me, looking into my eyes. In turn I look down at his entire body, his chest, in a dark linen shirt, his skin olive-brown, his Levi's belted and black loafers on his feet. I walk up to him and look into his dark eyes. We stand together, not touching. Then he is gone, or the moment is over. Was this a waking or lucid dream? The first, an involuntary dream occurring while someone is conscious; the second, when someone is aware they are dreaming. Did it come from my conscious or unconscious mind? Was it a hallucination – a psychotic symptom when someone sees or hears something which isn't there? I don't know, but I was not at all frightened by what I saw. On the contrary. The thought of it still brings me something akin to bodily pleasure.
Sometimes, usually between three and four in the morning, when nothing makes sense, I am prone to wondering whether we paid a devastatingly high price for what we were given.
Did we selfishly love each other too much? Were we too happy? Were his cancer and death a punishment for our excessive pleasure? In those bleak moments in the dark, I can still lose my reason and think there can be no pleasure without pain. I can also summon him back in the small hours before dawn. I can imagine his arms around me, the feel of every inch of him telling me to go back to sleep or laughing at a joke. I see him perfectly and I can look right into his eyes again, feel his hand holding mine. He can put me to sleep when my own meandering wakeful thoughts cannot. I have him back, and yet I don't.
Written by: Louise France
© The Times of London
