Tuesday, December 06, 2005

Amnesia: a love story

A few years ago I saw the last few minutes of a TV documentary. Those moments made a deep impression on me, although I saw so little of it I didn't really even know who or what it was about, except that it concerned a man in England who'd lost his memory in a very profound way. Then the other day, just by chance, I came across another documentary on the same subject, and finally learned his story.

Clive Wearing was a British musician, conductor, and musicologist who came down with encephalitis about twenty years ago, a sudden attack that left him with only his short-term memory. Now short-term memory is a wonderful thing--it allows us to remember things briefly--but it's not everything. Ordinarily, after events or facts are put in our short-term memory for a few seconds, we can either delete them or store them for future reference. It's this long-term storage capacity that Clive Wearing utterly lacks.

And I mean utterly. Lots of people--especially the elderly--have some problems with memory. But Wearing not only has essentially no long-term memory, but his extremely formidable intellectual capacity and verbal proficiency are totally intact, making his situation all the more poignant and horrific.

Why am I mentioning all this? It's hard to explain without seeing the man himself on the tapes. There is something utterly gripping and profoundly disturbing about his plight, one that I would never wish on a living soul. His life has been shattered and blasted, and yet he is still alive--a terrible fate, indeed. But there's another thing about Wearing, and that's the real reason I'm writing this. He shows the extraordinary resilience human beings can sometimes exhibit, and the sustaining power of love.

Love you say? What's love got to do with it?

In Wearing's case, just about everything. In fact, I am convinced it's love that keeps him alive, and keeps him sane despite his tragic and lamentable disability.

I'm not whitewashing the situation, believe me. It is terrible, and if you watch the documentary you'll see Clive utter many remarks such as these:

Can you imagine what it's like — one night 20 years long with no dreams and no thoughts. My brain has been totally inactive, day and night exactly the same. There's no difference between this and death.

Or engage in dialogues such as this:

TARA BROWN: To live without memory makes Clive angry when you ask him to think about it. Are you a happy man?


TARA BROWN: Are you a happy man?

CLIVE WEARING: Happy? I've been unconscious for how many years? That doesn't make you happy, does it?

TARA BROWN: So are you an unhappy man?

CLIVE WEARING: Of course I am. I've never seen a human being before. Never heard a note. Never seen anything at all. Day and night exactly the same with no dreams of any kind.

But Wearing's story illustrates that that elusive construct, personality, seems to be something very real. Somehow, even without much memory, Clive is still himself; he retains his "Cliveness," as his wife says. Even now his personality and intelligence are impressive; if he retains a tremendous charm under these conditions, one can only imagine how extraordinary he must have been before.

From the beginning of his illness Clive always could remember certain elements about himself and his life, even though he had no memories of a single actual event in a life filled with honors and accomplishments as well as personal fulfillment. He remembered, for example, that he'd been a musician and conductor. He remembered he was married and who his wife was; he remembered his children from a previous marriage (although not their names). That was pretty much it, however.

What is the thread that holds all three things together? I submit that it is love.

Clive Wearing seems to be a man who was unusually gifted--and blessed--with love. Actually, I don't know why I use the past tense--he is usually gifted with love. Here is a description of his relationship with his wife, Deborah:

TARA BROWN:... it's his pleas for Deborah to visit that are the hardest to read [in his diary] for, though she visits often, he has no recollection of seeing her. You wrote here, "Please fly here at once, darling Deborah".

CLIVE WEARING: No, "at infinite miles per hour".

TARA BROWN: Oh, sorry.

CLIVE WEARING: She says at once.

TARA BROWN: I can't read your writing.

CLIVE WEARING: I can, I'm used to it.

TARA BROWN: Do you remember writing that?


TARA BROWN: Why did you implore Deborah to arrive here?

CLIVE WEARING: I love her.

TARA BROWN: You love her.

CLIVE WEARING: Didn't you know?

TARA BROWN: I've been working it out.


TARA BROWN: Do you think of your relationship with him as a husband and wife or is it mother and child?

DEBORAH WEARING: Oh, no. Husband and wife. It's, it's, it's a marriage, although it's ... obviously, apart. It's not an … it's quite an unusual marriage, let's say. Hello.

CLIVE WEARING: Oh! Ooh! You're the best angel on earth.

TARA BROWN: It doesn't matter who's in the room, they can't hide their affection for one another. They only knew each other for six-and-a-half years before Clive got sick. He can't remember people he's known all his life, yet Clive can't forget Deborah.

DEBORAH WEARING: Who needs music?

CLIVE WEARING: Who's music?

DEBORAH WEARING: No, who needs music?

CLIVE WEARING: A madman like me.

TARA BROWN: Even in those very first days when he couldn't communicate, he could still say to you "I love you."


TARA BROWN: How do you explain that?

DEBORAH WEARING: Because it's very, very important. Some words I think that are just sealed in to our minds and our hearts, some feelings are just sealed in and not … they're not open to corruption.

If you see Clive and Deborah in action, you cannot help but come to the conclusion that she is correct, although a scientist might put it quite differently than she does. It seems that feelings can exist outside of specific memories, and can give a certain continuity--a leitmotif, as it were--to a life, even one as bereft of memory as Wearing's.

I used the word "leitmotif" in the previous paragraph for a reason; it's a musical term. For music is the other great love of Wearing's life, and in this, as in his marriage (although certainly not in many other things), he has been an extraordinarily fortunate man. And this is because musical learning seems to be quite different from ordinary memory, and more likely to remain intact despite a disease such as his.

It's not that Wearing can sit down at the piano and play all the old pieces he used to know. Or actually, perhaps he could, but he doesn't. What he can do is read music; place a sheet of music in front of him and he sight-reads it beautifully, that capacity fully intact. While he is playing, he seems whole; the flow of the music admits of no breaks, one moment leads seamlessly to the next and gives the activity a continuity that the rest of his existence lacks.

There's no denying that there's been a great deal of suffering involved in Wearing's life and that of his wife and family. It was particularly acute in the first couple of years after his illness. During that time, for example, Wearing went through a month of perpetual crying:

One day when Deborah Wearing visited her husband in the hospital, his face was a picture of complete horror at his condition. That evening he started to cry. He cried all night and all through the following days. His pillow was wet with tears; he was constantly thirsty because he had lost so much fluid. Even before he opened his eyes in bed in the mornings, his tears started to roll down his cheeks and at night he fell asleep crying. After one month he was still crying but the tears had stopped flowing...

During his crying spell, Deborah Wearing would often ask her husband: "Darling, what's wrong? Tell me." For a long time, he didn't answer her question; when he did, it was just one sentence: "I am utterly incapable of thinking!"

But these scenes no longer happen; in some strange way, Wearing has adjusted emotionally to his condition, and seems relatively happy much of the time, especially when Deborah is near. And she, too--with the help of religion, which she found a few years ago--seems to have adjusted, and to be in some way happy, although it's a very different happiness than the one they had before his illness; their present happiness has been extremely hard-won indeed.

Weighted down by the almost unimaginable sorrow and strain of it all, Deborah had actually divorced Clive some nine years after his illness and moved to America to get away, perhaps even to marry and have children. But, inexorably drawn back by the power of love, she returned and remarried him. Apparently Clive retained enough of his "Cliveness" to keep her from beginning a new life with anyone else.

As she says,

I realised that we are not just brain and processes. Clive had lost all that and yet he was still Clive. Even when we didn't see one another, when we were six months apart and only spoke on the telephone, nothing had changed. Even when he was at his worst, most acute state, he still had that huge overwhelming love ... for me. That was what survived when everything else was taken away.

Clive himself seems to agree:

Clive often says: "We aren't two, darling, we are one." Recently, someone asked him to state his complete name. "Clive David Deborah Wearing," he answered. "Strange name. Who knows why my parents called me that."

As Pascal said: The heart has its reasons, of which reason knows nothing.


At 4:41 PM, December 06, 2005, Blogger Alex said...

Did he have a period where every thirty seconds he found out that he had lost his memory? That must have been difficult. But if he now "remembers" about his memory loss, this seems evidence that there is at least some way for him to assimilate new information.

At 7:26 PM, December 06, 2005, Anonymous Anonymous said...

I have often wondered who a person becomes when they can't remember who they are. For Clive, his love is the constant that he carries with him regardless of all else. This is very encouraging.

At 8:54 PM, December 06, 2005, Anonymous Anonymous said...

I'm reminded of Victor Frankl's idea that the will to meaning is at the core of our life.

At 9:37 PM, December 06, 2005, Anonymous Anonymous said...

I'd hate to be sick like Clive, but Boy would I love to love like that.

At 10:25 PM, December 06, 2005, Anonymous Anonymous said...

Neo, thank you for this incredibly moving post, and for that matter, for this blog. I never know what I'm going to find when I come here, but I do know it'll always be worth reading.

At 11:31 PM, December 06, 2005, Blogger neo-neocon said...

Nikolaides: you're very, very, very welcome.

Alex: Yes, indeed, you are describing exactly what happened. I didn't go into all the details because then this post would have been incredibly long. I've linked to three articles about Wearing: one from the Gurardian, one from Spiegel, and one from 60 Minutes (I saw the documentary the other night on TLC; there's a link to that, too). If you follow the links you'll find a great deal more information about him.

Essentially, though, he does "wake up" at frequent intervals and records the awakenings in a diary. He's done this for almost the entire course of the illness:

Deborah Wearing gave her husband a diary. She thought it would aid him in conquering the past. And Clive diligently wrote down his day. But differently than his wife had thought he might:
11:45 -- Woke up for the first time.
11:48 -- Now really awake!
11:50 -- Finally awake, for the FIRST time!!

New entries continue down the page asserting that Clive is awake. Most are scribbled out, corrected and written over: "Now REALLY and unsurpassably awake!"

For many years, there is hardly anything else written in his diaries. Thousands of crumpled pages filled with scrawling notes written in the fervor of getting everything straight.

And yes, he does seem to learn in some general and very slow way, especially things related to feeling tones. It seems to be a slightly different way to lay down memories and to learn-- very inefficient and generalized, but still possible. For example:

When Deborah and the man without a memory met again after a long time, he seemed altered. Did he not seem to hesitate when she came through the door? No scene, no waltz around the hallway? It was as if he had decided: Probably she had just popped off to the bathroom for a moment. Have the years, after all, left a mark in the brain of the amnesia-patient? That the path is blocked must not mean that there is nothing going on there. "I once told him that his favorite uncle Jeffrey had died. Ever since, Clive has never again spoken of him in the present tense," Deborah says. Wearing started to joke about himself like someone who knows about his idiosyncrasies. "I must be awful to bear," he often said. Deborah found him more touching than ever.

In his book An Anthropologist on Mars, Oliver Sacks writes about similar phenomena with memory-impaired individuals. Over time, they seem to be able to learn certain things not as facts or memories per se, but as emotional states.

At 11:12 AM, December 07, 2005, Blogger SC&A said...

I'm not sure how best to describe this post- extraordinary, in the sense that you have presented something we might have missed or not clearly have ever understood.

It is also a wonderful post. How often do we see the 'power of love', and all that implies? And how often do we clearly see how valuable real love is?

At 1:34 PM, December 07, 2005, Blogger Cathy Young said...

Wow, neo. A disturbing but poweful and, ultimately, beautiful story.

At 12:24 PM, April 14, 2006, Anonymous Anonymous said...

What you're saying that Clive has lost the melody but the counterpoint endures.. I guess.

ed in texas

At 2:20 AM, October 03, 2006, Blogger Anantha said...

Hello neo-neocon,

I got to read about Clive and Deborah in a recent edition of Readers Digest [Indian edition] under the title 'Forget me not..'. I literally wept reading their story.
I wanted to document about the Wearings in my blog. Started searching in net for more info. Good to see ur post apart from the info I got from Guardian and 60 minutes.


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