Diane Ackerman’s One Hundred Names for Love

Some of you may have heard of Diane Ackerman‘s book “One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing”. Below we are sharing an audio interview (and the corresponding transcript) with Diane that has been originally conducted on The Leonard Lopate Show and published on WNYC website.

Transcript

Diane Ackerman and her husband Paul West, both writers, had built their relationship and 40 year marriage on the intricacy of word play. But, when at 74 Paul suffered a stroke that rendered him largely unable to communicate it was not only his joy of communication that was devastated, but also the foundations of their marriage.

One Hundred Names for Love, Ms. Ackerman’s new memoir published by Norton, chronicles the couple’s struggle to rehabilitate Paul and rebuild their relationship. And, I am very pleased that it brings Diane Ackerman back to our show today. It’s always a pleasure to see you.

Diane: Thank you. Lovely to be with you again.

You’ve been here in the past in two capacities: as a poet and as a naturalist. Haven’t you studied and written about the brain?

Diane: Yes indeed, I was on a book tour for An Alchemy of Mind, a book about how the brain becomes the mind when Paul had this stroke take place. So, in a sense I was the worst possible person to have a spouse with a stroke. But also the best.

Well, you must have in thinking about that been prepared on some level to deal with this. Or, is it possible to even be prepared for such an event?

Diane: I am not sure it’s ever possible to be prepared for a complete change of life, or change of marriage. But, if you think about it, anybody any couple that stays together long, probably it isn’t one marriage but several. Things happen to them and they have to embrace it. In my case, I knew in chilling detail what had happened. But I also knew the latest findings in neuroscience, that the brain is very plastic. It’s not what we were always told that there can be no changes made, but that some neurons can take over for others.

But, at the start, I am assuming your background as a poet where finding just a right word is a major goal made it a bit frustrating to watch what Paul was going through.

Diane: It was. On the other hand, I was able to apply as much of my poets background to understanding the absolute hilarity of what aphasics tend to say. And, just open my mind a little bit more to his new circumstances.

So, he was aphasic. But, there are different kinds of aphasia.

Diane: He had the worst kind, the global aphasia. He could not understand anything anyone said to him. He couldn’t read or write, suddenly he couldn’t do math. This, for a man that had published almost 50 books, taught for 30 years, had a first at Oxford. You know, used to lecture at RAF on giving good lectures. Our lives were completely enthralled by words. So, it was a big change but I decided that I would see how much improvement I could get back for him.

I remember when a friend had a stroke and serious aphasia, she thought she was saying “sit down” and “I’ll go get you a cup of coffee” but she was saying something that just sounded like gobbledygook. Her tongue was not moving to where her brain was telling it to go.

Diane: That’s true. And it’s not that the person doesn’t have an intellectual life. Years later, when Paul regained quite a lot of speech he could tell me what was going on in his mind. And, it was absolutely fascinating. He had three voices all of the sudden speaking to him including the voice of the BBC announcer.

So, this is something that developed after the stroke? Or, had it always been there, do you know?

Diane: No, I think it developed after the stroke because the brain was shaken up in really interesting ways.

Well, there are different kinds of aphasia. There is Werneckie’s aphasia, there is Broca’s aphasia, what did he have?

Diane: He had both. So, he had trouble speaking but he also had trouble understanding. And the great challenge, really, was to somehow be a caregiver on my part and find ways to help him relearn language. And he just worked like the Dickens…

But, I would assume there is also, the frustration of not being able to communicate made him both depressed and angry at times.

Diane: It did, and that’s perfectly normal. I insisted that he be put on anti-depressants right away and also on Ritelin to help with focus. And then I decided to just saturate him in language. And, I hired the most wonderful cutest nursing student who would swim with him for couple of hours every day. A real chatterbox, oh yes and wear her bikini because I thought that would inspire him to pay attention. And she saturated him in language.

That’s physical therapy on a number of levels.

Diane: Hey, there you go. And I made up different kinds of workbook exercises for him.

What had happened to his memory?

Diane: He remembered long term, but he didn’t remember short term. And something very odd happened that I had never read about before but I began to realize as I was watching him. And, that was that yes he’s lost all the simple words like table and chair, and mother and so on that we learn when we are little. But he retained all of the big words that you learn as a grown-up or maybe through your specialty or a hobby. So, he would come to me and say “Where is my jerken?” and I’d say “Oh, your jacket, it’s on the table”. Or, he would start talking about pastilions or tardi grades. Or, he would confuse his speech therapist because he would mention a tesseract and they would say that’s a non-sense word and then I would say “No, actually tesseract is a three-dimensional object unfolded into the forth dimension; he is pointing at the telephone”, in a weird way that’s what it is.

So, the telephone has become a tesseract?

Diane: It did for him. And, one morning he got up and all he wanted to ask for was his valure jogging suite but instead he asked for the cantilever of light.

And you know, we’ve had been married so long that I instinctively knew, that’s what he meant.

Had he forgotten things from the childhood. You said he had long-term…

Diane: No, it was the short-term…

But, what about your relationship? Did he seem to remember everything that had gone on as he might have under other circumstances.

Diane: There was one really important thing that he didn’t remember. We had always been very kissy, sentimental sweethearts and he forgot every pet name for me. And, as part of his therapy I suggested he might wanna make up some new ones. And, as we were saying with aphasia all the wrong words get blurted out and this was a way for him to kind of dominate it. So, one pet name a day, he started making them up for a hundred days in a row — that’s where the title of the book comes from — and they were so wild. Some of my favorites were “my snowy tangenyka”, “spilf of the morning hallelujahs”. You can see looking at me why I liked “the little bucket of hair”, and so on.

Well, so the poetic side was actually coming out.

Diane: Well, it was coming out inadvertently. You know, this was something I as a poet would have to really work hard for to put together “o’parochy of listam star”, which was one of his names.

He called you “o’parochy of listam star”?

Diane: Don’t you love that? Or, he called me “my billiard table of the decaying gods”. It was so much fun and when there is something catastrophic in a family, like stroke, and it touches so many households, millions in America, I think the play and laughter is one of the first things to go.

My guest is Diane Ackerman, who’s latest book “One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing”; it’s was published by Norton.

Well, at the beginning he was at the hospital. When you are in the hospital you’re just lying there. There isn’t a lot to remember, is there?

Diane: No, you know you were asking me about my background as a poet and naturalist and I don’t know if there can be a natural history of an illness but partly the book is that. Because my favorite way to transcend is to commune with nature and to pretend for a moment that I am Margaret Meed appearing suddenly somewhere and observing the customs and the rituals for the first time. And that’s what I did in the hospital too. And, I was quite shocked at how the things that go on in a hospital play havoc with your senses in a very subtle way. For example, the lights over head are only ever on as if the sun is at noon. That’s not normal, it’s misinforming your brain. And, there is so much pinging and worrying and there are people who wake you in the night and they are uncommonly interested in body fluids. You know, it’s kind of like an alien abduction situation.

So, that can be confusing even if you haven’t had a stroke.

Diane: Exactly.

Did you worry that the prolonged hospitalization would somehow hold him back?

Diane: I did. And not just that, but I think it affects visitors in profound ways too and we really need to think about what a culture of being in a hospital is like and how we can improve it for people. You know, we are talking about stroke and most people think of stroke just happening to people who are elderly. But, I like to remind people that there are 300,000 cases of traumatic brain injuries a year with young people in traffic accidents, gun-shot wounds. And the Pentagon says that 200,000 young soldiers have returned home with injuries like this and a lot of them have very similar language problems too.

Have to go through aphasia and then therapy?

Diane: And unfortunately insurance doesn’t cover very much rehabilitation.

Therapy, of-course, is the part of hospitalization experience.

Diane: But, never enough.

Did he respond positively to it at first?

Diane: He did at first, just a little bit. But, unfortunately, it’s designed for people in very accute situations and even today a lot of therapy is based on lesson plan — as with most teaching — rather than on trying to figure out how the individual learns best. So, at a certain point I just discovered that it wasn’t doing enough for him. We went to five speech therapists and they were noble-hearted people but you really have to deal with each person as an individual, and it was at that point that I found it too heart-breaking and decided to try to figure out what would help him.

So, one of the things was to bring him home.

Diane: One of the things was to bring him home.

Did he want to do that?

Diane: He was desperate to get home. In fact, home was one of the very few words that he could say. When this first happened, all he could say was one syllable “mem”. And, that’s not unusual. The poet Baudelaire was only left saying “God damn”, which was unfortunate because he was being taken care of by nuns. So, they thought that he was just blaspheming all day long. Lots of other famous artists, you know, ended up in the same situation but because of the nature of the illness they couldn’t describe what was happening to them.

Of course your house was not the same when he returned because, I am assuming that both of you wrote during the day in separate rooms?

Diane: Yes, we did tend to write in separate rooms, normally across the hall from each other.

Did you go back and forth during that time? Or, would you wanna be as secluded as possible and Paul be as secluded as possible?

Diane: Before the stroke?

Yeah.

Diane: Before the stroke we were as secluded as possible but we were only a couple of feet apart. And, he would type on an old-fashion typewriter so I would hear that nasty little bell ringing at the end of the line, which, you know, was always reminding me that he was being much more creative than I was working on a couple of feet of poetry. But, we could visit with each other and we could share inspirations and so on. After the stroke life changed dramatically and it wasn’t just a question on how to help him in a medical sense. You know, it was a larger question of how do you handle a changed relationship with grace and indignuity and patience and love.

He couldn’t type because he’d lost the use of one of his hands, hadn’t he?

Diane: That’s true. And, over the years he did learn how to write one-handed. We are told all the time and we are told in books and also by a lot of doctors unfortunately that there is a window of opportunity after some sort of brain damage, of any kind. And, that just isn’t true. You can make improvements one year, five years, ten years later and they can be incredibly meaningful.

In the hospital usually we are in quiet environments but here’s a man who needs to get as many words into his brain as possible. How did you do that?

Diane: In the hospital, I just kept talking with him all the time but that was not a good situation to do it there. There were too many distractions.

Do you think he was understanding what you were saying, every time?

Diane: I think that, in fact I know that he was not understanding but that he thought that he was making sense and that for some very perverse reason people were pretending not to understand him. At home it was still very difficult for him to understand, but more heartbreaking for me, by far, was that at first had lost his ability to make images. He had lost his vivid way of describing world and he had been such a stylistic writer and thinker.

You mean, he lost metaphor?

Diane: He had lost metaphor and so since we couldn’t communicate with words, at first I would get in bed with him every morning and we would cuddle for about an hour or so and giggle. You know, it’s like with stuttering and the Kings Speech: the more stress you are under the harder it is to speak when you have aphasia. But, if you are just waking up and you are feeling cozy, it’s a little bit easier. And, I would tease him… I started calling him Wombat for example and said “Mr. Wombat, Mrs. Wombat, what do you think their first names are, do you think they have children, how many, what do you think the kids names are”. And, we would play word games like this and he would make pet names and so on. And with one thing and another his brain — with the gift of plasticity that it has, the gift of mending itself — finally began to hit its grove again.

Would watching television and listening to radio have helped?

Diane: It did help. And, he had favorites that he watched on television. He loved to watch “Judge Judy” at first because she spoke very distinctively and emfactically. And then he loved watching Brian Williams and Rachel Maddow. Again, the way they phrased things, the rhythm, and they seemed very compassionate

There are some passages in the book in which Paul recounts the sense of self during the first very difficult months after his stroke. Can you talk about what he says he experienced. You say he was having problems dealing with the fact that he was unable to communicate. I’m assuming he was also very frustrated.

Diane: He was deeply frustrated and very depressed and suicidal, all of which is quite normal after really kind of any brain illness. And at some point I thought, what can I do for him that will solve a lot of problems that are going on. I suggested he might wanna try writing the first aphasia novel or memoir. He could barely speak but he thought it was a good idea and so I had him dictating. It was unbelievable laborious, but it was very therapeutic for him.

Was that the Shadow Factory?

Diane: It was.

Published by Powel Books?

Diane: Newman Books

Diane: It was very therapeutic for him because as I’ve since learned when people have any kind of chronic illness it really helps them to tell their story to someone. Not just to communicate and interact with someone, but as a way to organize their version of what happened to themselves and as a way to re-inhabit their life again.

Now, what happens to you? You are a writer, a naturalist and now you are suddenly a full-time caregiver.

Diane: Almost nobody knew when I published The Zookeper’s Wife, I think I was visiting you to talk about that book

You didn’t tell me that your husband has had a stroke.

Diane: No, nobody knew.

And Paul had been on the show, earlier.

Diane: That’s right. And, no-one knew that I was writing that book after his stroke, while I was still a full-time caregiver.  And it really was my sanctuary. A caregiver greatly changed by the culture of illness.

How far has he come along since?

Diane: He is now able to be quite fluent for about three hours a day. He still sundowns the way a lot of people do. We say that we are crashing, you know towards that part of the day; he sundowns. But, during that period of three hours he can communicate quite well, he’s write a couple of books since then. He is working on a memoir. He’s come a great distance and if anything he is happier then I’ve ever known him to be. He’s living very much in the moment and we just consider each day a spectacular gift.

And, just a few moments we have left. What would you like to see changed about the ways stroke patients are treated?

Diane: The first thing is that people should understand that because somebody can’t speak doesn’t mean that they don’t have a mind. Very often their intellect is quite intact, in fact most often. Also, people are afraid with him there are so many wonderful ways to do it. There have been a lot of famous people who had strokes, like Samuel Becket for instance and who retain an extraordinary sense of creativity and self. And, it’s just a question of finding new and creative ways to be loving friends and caregivers.

Diane Ackerman is a best-selling author of Natural History of Senses, most recently The Zookeper’s Wife, there’ve been a number of other books. And, her latest is called “One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing”. It is published by Norton.

Diane Ackerman’s website.

Another (~1h) interview with Diane Ackerman on Diane Rehm Show.

This book on Amazon.

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