The man who keeps falling in love with his wife
When a virus destroyed part of his brain, Clive Wearing was left with no memory. He is still trapped in an eternal present. Yet he does remember that he loves his wife, Deborah. Here she tells their heartbreaking story
Clive had no idea that Tuesday, March 26, 1985 would be his last day of conscious thought. We weren't ready. Did he feel his brain disappearing that night? Why didn't he wake me? By morning he could not answer a simple question or remember my name. The doctor said it was flu and a lack of sleep that was causing the confusion. He tucked him up with a temperature of 104 and a bottle of sleeping pills.
"No need to stay home," he said to me. "These'll knock him out for eight hours. Go to work."
I went to work. When I came home that night the bed was empty. His pyjamas lay crumpled in the middle of the bare sheet. I screamed his name. Running the length of the flat, I already knew something bad had happened.
"I'm never ill," Clive used to say. And he never was. Then all of a sudden he was. But instead of a normal illness, this one is rare, sneaky. Nobody knew what was wrong with him: not the taxi-driver who found him wandering the streets that night, nor the policeman who traced his address from his credit card and called me.
When we finally got him to St Mary's Hospital, Paddington, the doctors thought he was a goner. Only they didn't put it like that. They told me what they thought he might have, and said it had a high mortality rate. I didn't know if that meant probably live or probably die, and I didn't like to ask.
The diagnosis came 11 hours after our arrival at St Mary's. A virus had caused holes in Clive's brain; his memories had fallen out. The doctors said it was encephalitis, from herpes simplex, the cold-sore virus. The virus, they explained, lies dormant in most of the population. Once in a blue moon it slips its moorings, and instead of going to the mouth it goes to the brain. The brain swells up, and, before long, brain crushes against bone.
The virus does its damage before anyone knows it is there. Affected areas include temporal lobes, occipito-parietal and frontal lobes... thalamus, hypothalamus, amygdala; it just keeps on storming through. The part it wipes out completely is the hippocampus, Greek for seahorse. These structures are what we use for recall and remembering, and laying down new thoughts.
By the time they had figured out what was wrong with Clive and started pumping anti-viral drugs into him, all he had left where his memory used to be were seahorse-shaped scars. He could not remember a single thing that had ever happened to him, but he remembered me and knew that he loved me.
August, 1985: "How long have I been ill?''
"Four months."
"Four months? Is that F-O-R or F-O-U-R (ha ha!)?"
"F-O-U-R."
"Well, I've been unconscious the whole time! What do you think it's like to be unconscious for... how long?''
"Four months."
"Four months! For months? Is that F-O-R or F-O-U-R?"
"F-O-U-R."
"I haven't heard anything, seen anything, smelled anything, felt anything, touched anything. How long?"
"Four months."
"... four months! It's like being dead. I haven't been conscious the whole time. How long's it been?"
After two weeks, I decided it was legitimate to start saying, "Nearly five months," to skip the joke. It was all I could do to manage the dialogue itself, but finding the patience to react each time as if for the first time - so that he wouldn't feel that I was ignoring him - was sometimes beyond me.
Clive was constantly surrounded by strangers in a strange place, with no knowledge of where he was or what had happened to him. To catch sight of me was always a massive relief - to know that he was not alone, that I still cared, that I loved him, that I was there. Every time he saw me, he would run to me, fall on me, sobbing, clinging. It was a fierce reunion.
"I thought I was dead," he would say, "if I had any thoughts at all."
If I left Clive's side, the impact of my reappearance after a trip to the bathroom, a word with a nurse, was no less than at my first appearance that day. Clive was living in an abyss, and then out of nowhere, without any warning, I, his wife, would appear over the rim, right there in the room with him.
Sometimes his right arm shot up in the air and he would sing a high note, a little cadenza, he would lift me up and swing me round and laugh, then stop and hold me and look at me, study my face, grinning, searching to see if I had cottoned on to the fact that he was awake now, alive, truly seeing me.
"I can see you!" he'd announce triumphantly. "I'm seeing everything properly now!" It was hard to look excited and delighted for the umpteenth time on one visit, but being besotted with him helped. I was always delighted to see his face, to hold him and kiss him. Before he'd been ill, we would greet each other whenever we found ourselves in the same room together.
When we met at the end of the day or in the street or at rehearsal (Clive was a conductor and BBC music producer when the illness struck), we always hurried to reach each other, passionate and full of affection. So, although it was painful when Clive was so distressed, hugging him for some minutes after a visit to, say, the bathroom, was in keeping with our relationship.
In spite of Clive's amnesia, inside he retained his fundamental intelligence: the same intelligence that had propelled him throughout his career. He was often lucid and, apart from occasional episodes when he was full of rage, he was himself. That was what made his condition all the more horrific.
Clive no longer had any episodic memory, that is, memory for events. Clive did not have the brain parts necessary to recall anything that had happened to him in the whole of his life. But, as is the case with amnesia, he could remember general things. For example, Clive knew that he was married, although he was unable to recall our wedding - a civil ceremony in Camden Town Hall in September, 1983.
He could not have described my appearance, although he knew me as soon as he saw me. He knew he was a musician and conductor, but could not recall any concert. He knew his children by his first marriage - two sons and a daughter, all grown up - but expected them to be much smaller and wasn't sure how many he had. He was surprised to see that The Times no longer had personal columns on its front page, and thought it would cost fourpence, a pre-decimalisation price.
He knew his own name and the names of his siblings and childhood family. He knew facts about his childhood life: where he grew up, where he was evacuated to in the war. He knew that he went to Clare College Cambridge, on a choral scholarship, opting against King's because "everybody wanted to go there".
After that, his sense of his own autobiography got a bit hazy. It was just as well we'd been together six-and-a-half years, or he might not have been able to remember me.
We were looking around for treatment, a brain-injury rehabilitation programme that would take him on. But could rehabilitation stick when nothing else had? Clive could not remember the sentence before the one he was in. Conversation, watching television or reading were beyond him.
I learned that amnesic people have some residual learning capacity that is implicit; they can learn through a kind of conditioning process. A person can learn to respond to certain stimuli even if they think it is their first experience of the stimulus. For example, since the staff always gave Clive a small plastic beaker of water with his medication, he would expect it, raise the beaker and say every time, "Is this champagne, or real pain?"
Amnesic people can also recall by using "priming": that is, if they hear one thing or phrase associated with another, hearing the first prompts a statement of the second. So, if I said, "St Mary's," Clive could say, "Paddington," though he had no idea what it meant.
When Clive made the first entries in his diary it was at my prompting. But on Sunday, July 7, 1985 he made his first spontaneous entry: "Today: 1st CONSCIOUSNESS... Conscious for the FIRST TIME."
This probably marks the first time Clive was able to articulate to himself the strange phenomenon of immediate and blanket forgetting that he had experienced since he was brought into hospital.
Clive made entries in the diary every two or three minutes. People have sometimes interpreted that to imply a new awakening at two- or three-minute intervals. In fact the lapse between each entry signified only the time it took for the process of recording. It involved deciding to write down the fact of his awakening, pulling a pen from his pocket and writing; then a read-through of previous entries, scoring these out because he was sure he had been unconscious when he wrote them.
When he came to the last entry he checked his watch and saw that it was incorrect, so he amended it, reinforcing the last and only true entry by underlining it. Finally Clive would replace the top on his pen, put it back in his pocket and look around to get his bearings in the room. That process might take the few minutes between entries. His span of "consciousness" is actually a great deal shorter.
Every diary entry gives an eyewitness account of a life with no memory: "5.10am Conscusch FINALLY AWAKE AT - AM [a hotchpotch of successive times all scribbled out later] exactly. Newspaper arrived at 8.40am Medicines arrived at 8.45am AND I AWOKE properly AT 8.47am. And completely at 8.49am And became aware of the problems of understanding me."
I was reading medical books, but the cases I read about bore little resemblance to Clive's. For one thing, he started to talk backwards. It had the qualities of compulsion, as if it were his language of choice. He spoke backwards more quickly than anyone could decipher what he was saying. He thoroughly enjoyed this, and gave the staff a run for their money, giggling when they couldn't make him out. He didn't seem to be able to recall my name, but recognised it when he saw it.
"harobeD!" he said. "O harobeD, I evol ouy!"
The fact that Clive could spell and speak back-to-front with such facility and wit showed there was some real intelligence alive in there. His brain might be dark, and yet he was a crack backwards-speaker.
I was soon to discover that more of Clive's brain was intact. There were not many places to go off the ward with Clive but the hospital chapel was one of them, a familiar environment to Clive, who had spent his whole life singing, playing the organ or conducting in similar rooms.
I picked up some music and held it open for Clive to see. I started to sing one of the lines. He picked up the tenor line and sang with me. A bar or so in, I suddenly realised what was happening. He could still read music. He was singing. His talk might be a jumble no one could understand, but his brain was still capable of music.
This opened a door for Clive. He could sit down at the chapel organ and play with both hands on the keyboard, changing stops, and with his feet on the pedals, as if this were easier than riding a bicycle. Singing was in many ways easier than talking. It transcended language.
And the momentum of the music carried Clive from bar to bar. He knew exactly where he was because in every phrase there is context implied: by rhythm, key, melody. When the music stopped, Clive fell through to the lost place. But for those moments he was playing he seemed normal again.
I had long worried about Clive's future care. He continued to live in the same room in the psychiatric wing of St Mary's, but it was not ideal. Then, in 1992, a new residential unit for people with acquired brain injury opened that was just right for Clive: a beautiful house in the countryside in the grounds of a large rehab centre.
With Clive settled, I could begin to plan my own extrication from the brain-injury world. I thought leaving England would perhaps be a way of leaving all the pain. I'd been 27 when Clive got ill. I was now turning 35. I initiated divorce. I took a plane to Washington DC and sold the London flat. I planned to stay away forever, make a new life. It didn't work out quite that way.
Clive never knew we were divorced because he was incapable of knowing anything. His family and his consultant agreed it would only upset him at the time, and he would remember none of it afterwards anyway. Legally he could not give informed consent, so his son acted for him.
Everyone understood that the divorce was partly one of expedience, since I would not be in the UK to look out for Clive; and partly an action to help me move on to a life beyond Clive. But I would remain joint next of kin with his son, because I wanted to continue to be involved in taking decisions about Clive, to continue to be his advocate. His family supported me in that.
I continued to visit him. Nine years into the amnesia, there was some difference in our reunions. For the first few years Clive had always found them intensely emotional, bringing on either grief, high-note joy or furious anger. Now, when I came back from America, it was my turn to feel intensely emotional. I was longing to see him.
When I put my head round his door, his face registered a rush of delight and surprise as if he were about to dash to me as usual and lift me up and swing me round, but then he checked himself. He stood where he was, diffident. He knew enough about himself to realise that although it might seem like months or years of absence to him, I might only have been to the bathroom.
He seemed to be learning, through a kind of interior rehabilitation. He was developing a growing sense that he had asked and heard these questions and answers of awakening before. Though his stump of memory never allowed progression from first moment to sustained time, he understood enough of his situation to help him relate to others without constantly shouting to be let out of his amnesia. As I observed these subtle changes since my absence, I could not suppress a flash of hope. What else might he accomplish?
For the longest time little changed. Clive and I were each in a limbo of our own. But one night in 1999 I discovered, during a phone call to a friend, that God is real and who He is. Suddenly I knew what was important. I was beginning to know how to live, and discovered the power of prayer
Meanwhile Clive, from being withdrawn and morose in his room, became garrulous and outgoing. There were certain themes he stuck to, and some of what he said was rather odd, but he had come a long way from the years of the endless same few questions.
Now he would string all his subjects together in a row, and the other person simply needed to nod or mumble agreement. On days when he was in particularly good spirits, he might run through all his topics at once. Then I knew he was happy. If he was unhappy he would revert to the desperate old questions - "What's it like to have one long night lasting ...how long?"
Now that it had been 14 years, nobody liked to tell him how long. "It's like being dead!" The staff had come to call these his "deads", and they would count them and enter them in their records as a measure of how he was doing.
Clive was, granted, still perhaps the worst case of amnesia in the world, but there was no doubt he was learning new things and the difference it made to his quality of life to be able to converse more easily was significant.
One day I rang Clive and asked him how he'd feel about renewing our marriage vows. "What a lovely idea," he said.
And so, on Easter Sunday 2002, Clive and I dressed up to the nines. Clive's son Anthony came with his wife and two children, and so did Clive's care assistant, Laura. We had not made our marriage vows in church first time round so this would be much more powerful.
Clive was able to participate completely, remembering the Lord's Prayer and saying all that he wanted to say. The best bit was when we knelt down and our joined hands were wrapped in a golden sash. It went beyond a physical joining. It felt like we were touching something of eternity. Afterwards the tea room served us large slices of Victoria sponge and Clive, although he had no memory of what had taken place, was delighted, laughing and quipping and eating everything put in front of him.
Back at Clive's home, they had made up a bed for me in his room, strewn with red rose petals and balloons, like a fairy tale. The decorations made me sad. It's still sad - that he's like he is and that, apart from the heart-to-heart love, we have nothing resembling a regular marriage.
Even spending the night together in the same room doesn't work, as he wakes up constantly, several times an hour, wondering who the shape in the next bed can be.
Clive still writes his diary. The entries have barely changed, but the handwriting is calmer now. And his disposition is a lot happier. He knows he is in his place and I am out in the world.
"When are you coming?" is his regular refrain. But if I hesitate at all he reassures me that he is all right and he understands I have to do what I have to do.
"Get here at dawn," he says anyway. "Get here at the speed of light."
And one day I do arrive at dawn. I drive through the near-empty roads, hoping to be there when he wakes. But when they open the front door, he is there, already awake, and I am the first person he has seen and he clasps me to him and sings a high G and waltzes me into the living-room.
"My eyes have just come on," he says. "I can see everything normally for the first time."
"And I'm here!" I say.
He hugs me again, holds me at arm's length and smiles.
Later, when he makes me coffee, he knows where the cups are and where the milk is kept. I take him for a drive, and as we draw near to the house on the way back, he must recognise the place, for he unclasps his seat belt and offers to get out and open the gate.
When I leave that night my car doesn't start and I have to come in and call the breakdown service. We make a drink in the kitchen. Seven minutes after the last mention of my car Clive says, "Well, at least it means you can stay a bit longer!" Perhaps he had been rehearsing the event in his mind through those minutes. When the garage has repaired the fault and the engine is running, I come back in to get my things. Clive is ready to say goodbye and not hello.
"Remember I love you," I say.
"I can never forget you for a moment," he says. "We're not two people but one. You're the raison d'être for my heartbeat, darling. I love you for e-ter-ni-ty."
When I reach home several hours later I call him. I want to tell him I've arrived safely but he's forgotten I was there.
"When are you coming?" he says. "Please come at the speed of light!"
"I just got home from you," I say.
"Oh really? Well, come at dawn then..."
True Love conquers all? even Brain eating viruses??
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