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Guest Host: Katty Kay
When writer Diane Ackerman’s husband of 35 years suffered a massive stroke, he lost his command of language. In the beginning, he could only utter one syllable, “mem.” And for Paul West, a writer, poet, and professor, that was a devastating blow. Over the next six years, his wife refused to give up hope. She saturated him with language and never left his side. Now Diane Ackerman has written about the experience in a new memoir titled “One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing.” In it, she shares the touching story of their marriage and explores the role of becoming a caregiver.
- Diane Ackerman author of "One Hundred Names for Love;" "A Natural History of the Senses;" and "The Zookeeper's Wife"
Diane Ackerman talks about her husband’s stroke and her new book on their life together afterward:
Read an Excerpt
From One Hundred Names for Love. Copyright 2011 by Diane Ackerman. Excerpted by kind permission of W.W. Norton & Company.
MS. KATTY KAYThanks for joining us. I'm Katty Kay of the BBC sitting in for Diane Rehm. Diane's taping a program with Maria Hinojosa at WGBH in Boston. Novelist, poet and all-around lover of language, Paul West suffered a massive stroke in 2004. At the age of 74, he was left only able to utter a single syllable. His wife, the writer, Diane Ackerman, witnessed his stroke and over the next six years she helped him regain his use of language.
MS. KATTY KAYHer new memoir, "One Hundred Names for Love," tells the story of his recovery and how their relationship evolved. Diane joins us now from a studio at WRLRN in Miami. Diane Ackerman, thank you so much for joining "The Diane Rehm Show."
MS. DIANE ACKERMANIt's a pleasure to be with you.
KAYAnd I do hope the weather's nice in Miami. It is absolutely miserable here in Washington.
ACKERMANI'm sorry to hear that.
KAYWe will be taking your calls, comments and questions, 800-433-8850, is the phone number, email@example.com is the e-mail address and, of course, you can find us on Facebook and twitter as well. Diane, I was reading your book last night. It is absolutely lovely and it strikes me that as much anything, it is a love story really.
ACKERMANYes, I think, above everything else, it's the crazy love story of two very playful, eccentric, romantic people who are completely obsessed with language.
KAYYou write that your husband, Paul West, was the most deliciously, quirky person that you'd ever met. Tell us a little bit about him.
ACKERMANHe was a real British eccentric out of myth and legend, you know, straight out of a PG Woodhouse novel. He only ever wore swimming shorts in the summer, even to formal occasions and velour jogging suits in the winter. He was afraid to be in the presence of fresh fruit. He only liked going outside if the weather was mild and he came from -- he had lots of other eccentricities, but he came from a very eccentric family, too.
ACKERMANSo he came by it honorably. It was typical for him, growing up in the British midlands to go visit his aunts and uncles and find them napping in the living room naked, but with books, open books covering their privates.
KAYI know the type from my own family as well. 2004, take us back to that date. You were already in hospital with Paul because he'd had a kidney infection, I'm right?
ACKERMANYes, that's true. And then, all of a sudden, he shuffled out of the bathroom and he stood at the foot of the bed and his eyes were glazed and his face was fallen and his mouth was drooping to the right. And he looked as if he might be asleep, but with his eyes open and I knew immediately what happened, that he'd had a stroke.
KAYAnd how did you know?
ACKERMANWell, because he had had a TIA, that is, a transient stroke, a few years before and that's the kind of stroke where the blood has stopped going to a certain part of the brain, but then it returns and you recover from those symptoms. In this case, I didn't know was he having a TIA again or a full-blown stroke.
KAYAnd what did you see? I mean, so you're looking at Paul and he's just shuffled out of the bathroom and describe his face to us.
ACKERMANWell, he moved his lips a little and he made a sound that was kind of like a buzzing sound. And I thought at first that he might have a mouth full of bees. It was a strange thought. And then I felt ice going up my spine as if the floor had just dropped 20 feet below me.
ACKERMANYou see, I had just been on a book tour for a book about the brain, "An Alchemy of Mind," and so I knew in chilling detail what had happened in his brain. And that if, indeed, he was having a full-blown stroke, that this was not something that one totally recovers from.
ACKERMANAll you can do is improve, once you have serious brain damage like that. I was the best and the worst person in the world to have a spouse with a stroke. Because I also knew what's now referred to as neuroplasticity, I knew that everything that we had learned about the brain when we were all growing up, that it was rigid and you're born with all the neurons you're ever going to have. And if you lose them, you're in deep trouble.
ACKERMANI knew that that wasn't exactly right, that the brain has a great gift for healing itself, for mending itself. And what neuroplasticity means essentially is don't lose hope, that there are parts of the brain that can take over for wounded parts.
KAYYou knew an awful lot and you knew when you were watching him going through this what was happening or what was potentially happening. What did Paul know at that particular moment? Could you tell from looking at him what he knew or whether he was aware of what was happening to him?
ACKERMANHe -- I couldn't tell at the time. It was only much later on when he was able to speak again that he was able to tell me that there was a pandemonium light show taking place in his brain. He felt his teeth blink and he heard many voices going around that he couldn't identify. He thought that he was speaking normally and that for some perverse reason, people were pretending not to understand him.
ACKERMANBut in truth, all that was coming out of his mouth was one syllable, mem.
KAYAnd he thought he was speaking normally and couldn't realize why you weren't responding to him then?
KAYBut so it didn't dawn on him, from the feelings that he had and his pandemonium light show that you described, that he was going through a stroke?
ACKERMANNo, because, you know, when someone has a stroke, the brain is so confused. It's inflamed and it's starved of oxygen and all of the senses get tuned up very, very high. That's typical. Things are too bright, too loud. There's a lot of cross-communications taking place and the absence of a lot of sensory cues to things going on. So his brain was quite scrambled at the moment.
KAYWas he scared at the time? I mean, when he described it to you looking back at it, now that he can describe what he was going through, was it a scary feeling or was it an exciting feeling? Was it -- how did it feel to him emotionally?
ACKERMANHe said that he was really very scared and he assumed it was the end for him. He didn't know what had happened. He felt like he had landed on an alien planet and everyone was speaking a foreign language that he couldn't understand and also numbers on clocks, for example, didn't make sense.
ACKERMANThey reminded him of the ruins so-called that were discovered at Area 51, you know, supposedly left by alien spacecraft. So you can see that he was very, very confused, but almost immediately he heard three separate voices speaking in his brain.
ACKERMANOne was the voice of a BBC announcer from his childhood, a man named Snag and one was a kind of barbaric sound of the sounds he was making and the third was a slangy American.
KAYSo strange. And so then you're -- so you're in the room, you go and rush out, call the nurses when you realize what's happening. They bring back the doctors and they start doing tests. And what was the diagnosis?
ACKERMANWell, the tests revealed that he had a massive stroke, one that was just tailor-made to his own private hell. In the cruelest of ironies, you know, when you think about it, for a man who's entire life revolved around words, but also whose romantic life revolved around words.
ACKERMANHe had damage almost exclusively to the language areas of his brain and he could no longer process language in any form. It's called global aphasia. And it really felt global. It felt like it was the end of our world when I heard this. A lot of people you know have aphasia and I knew because of my brain study that he had joined an unlikely club, a club by the way, that Representative Giffords now belongs to as well.
ACKERMANThere are millions of people who have stroke every year, about 5 to 6 million who are stroke survivors and of those, a vast number who have language problems. But it isn't only the elderly. The Pentagon reports that 200,000 of the young soldiers return home with traumatic brain injuries every year and outside sources have put the true figure a lot closer to 400,000.
KAYAnd explain something to me about aphasia, Diane. Is it actually, when somebody goes through a stroke or has a trauma, such as Congresswoman Giffords or the people returning from the battlefield, have they lost the language? Is that what's happened to them or is it something slightly different?
ACKERMANIt's not exactly a loss of language. It's a retrieval problem, a sorting problem. So the words are crowding one another and very often only the wrong words are the ones that the mouth can utter and they can be hilariously funny and charming. And over the years, we've really grown to appreciate them.
ACKERMANBut at the time this happened, suddenly his whole lifetime of words had vanished and he couldn't speak or read. He could no longer understand anything that anyone said to him. And this was especially tragic for him because he grew up in a British coalmining village, but he got a scholarship to Oxford where he studied English literature and languages.
ACKERMANHe was fluent in French, Greek and Latin. He was in the RAF where he was an officer who lectured on giving good lectures and he taught at university for 30 years. So his entire life revolved around books and around words.
KAYIncredibly cruel irony as you say. Did he have any other physical problems?
ACKERMANHe did. There's something called procedural memory, a memory of how you go about doing things that the brain knows and that was damaged too. And so he could no longer remember how to comb his hair, how to swallow food, how to steer a spoon to his mouth, how to use the toilet, how to walk and how to lift up one foot after another, to walk and these were all things that he had to relearn in rehab.
KAYOkay. We're going to take a quick break. The book is "One Hundred Names for Love." Diane Ackerman is my guest here in the studio. We're going to talk about Paul's rehabilitation, how you sat with him and helped him recover his use of language. The number here is 1-800-433-8850. Do stay with us.
KAYWelcome back. I'm Katty Kay of the BBC sitting in for Diane Rehm. You've joined me and my guest Diane Ackerman. She's the author of "One Hundred Names For Love: A Stroke, a Marriage and the Language of Healing." It is the story of her husband who suffered a massive stroke back in 2004 and how she helped him recover his use of language. Diane, we were talking before the break about the symptoms that Paul had when he suffered his stroke. And you mentioned right at the beginning that he could only utter one syllable, mem. How did he use it? How did he communicate with just one syllable?
ACKERMANHe used it with different inflections to mean absolutely everything. It meant take me home. You know, if you think about it, you can go mem, mem, you know, mem. He was angry with it, he was soliciting with it. He used it in every way he could think of, and this is not all that unusual. The famous poet Baudelaire was left only saying the word god damn. That was especially awkward since he was spending his days in a rehab place run by nuns. And they thought that he was blaspheming all day. But it -- one, we don't really know why this happens, but sometimes the brain gets stuck on just one syllable.
KAYAnd he knew that he was just saying this one syllable or not. Was he aware that this was all he was uttering?
ACKERMANHe knew that even though he heard the correct words in his mind all that was coming out was mem.
ACKERMANSo think how frustrating that was for him. It was just horrifying.
KAYDiane, you've obviously done research on this as well and you've written, as you said earlier, about the brain. Recent studies have changed, haven't they, the way that we believe the neuro pathways of language work?
ACKERMANYes, they have indeed. We used to think that there were just specific language areas, very small areas that controlled language. And now we understand that there are key language areas, but that so many things happen through networks in the brain. Neurons that are associated with each other, they don't even have to lie next to each other. They can be pretty far apart. And we've also found that you can persuade kind of limp neurons that were injured in a stroke to come back to life a little bit. And that you can count on some unused ones to come in and take over for others.
ACKERMANNow, this doesn't mean that it's curable 100 percent. Paul is still aphasiac today, but you can improve so much. And that was something that I told him very early on because when he could utter a few words, he asked when he would get completely well. And I had to explain that a stroke isn't something that you completely recover from. But you can improve so much and we were going to work together to get back as much improvement for him as possible.
KAYDiane, you said earlier that, in a way, you were the best person and the worst person because you'd written your book "An Alchemy of the Mind," so you did know what you were witnessing. But did also your knowledge -- as you started the recovery and the rehabilitation process, did having that knowledge kind of give you faith or hope or confidence to carry on working with him? Where some other people might've said, oh, my goodness, this is just too devastating. I don't understand and I don't believe that he's ever going to recover from this.
ACKERMANI think that happens all the time that people feel quite understandably overwhelmed, shell shocked. And the brain is a mystery that very few people understand anyway. But, as you say, I just happened to have been reading lots of studies and knowing that the brain could repair itself in some ways, but that it was going to take marathon work on my part and on Paul's, that gave me such hope. It really motivated me to keep on and to keep pressing him and to try to figure out how to keep our long love story alive.
KAYSo you got Paul home from the hospital and the process...
KAY...of rehabilitation begins.
ACKERMANAnd I hired speech therapists. We went through five. And they were very noble hearted, but none of them really could seem to help Paul in any way. And then, one day, something happened that really changed the course of our lives together and of his therapy. He was in a little library we have at home working with a speech therapist and she was showing him a photograph of a telephone on a table.
ACKERMANAnd she pointed to the table and she said, what's this, and he said, mem, mem, mem, skylargle. And she said, no, those are nonsense sounds. It's a table, the table. What's this? And she pointed to the telephone. And he said, mem, mem, mem, tesseract. She said, no, those are nonsense sounds, too. And suddenly, I turned on my heel and I went back in and I said, you know, actually, a tesseract is a real word. It's a three-dimensional object unfolded into the fourth dimension. And in a strange way, that's what a telephone does.
ACKERMANAnd it began to dawn on me that Paul had been uttering, in the midst of all the gibberish, every now and then some rather large words. Words like tardegrade and postilion and things and that it was entirely possible that even though the words that we learn when we're little in school, words like table and chair, may be processed in the key language areas of the brain. It was possible that the larger more sophisticated words or the esoteric words that we learn in our profession maybe, or a hobby when we're adult, maybe those get stored and processed elsewhere in the brain like a second language.
ACKERMANAnd I started taking over his therapy at that point and trying to tailor it to him. What happens so often in speech therapy, but you know in teaching of all kinds, is a kind of one-size-fits-all of way of doing things. You can either use a lesson plan or you can figure out how a student needs to learn. And the second is by far the most effective.
KAYDiane, do you think that was a kind of breakthrough moment for you and Paul where you took over his therapy, but where also you understood perhaps where elements of his brain were intact, that you could work with, that you could retrieve information from -- linguistic information from?
KAYIs that something, do you think, that applies -- I mean, I have a lot of callers and we're going to take calls fairly soon in the program also, of course, with experiences of this -- is that something that you would say to everybody giving care to somebody that's suffered something similar to Paul, that you need to find the areas you can work with. And they may be different for every single person.
ACKERMANNot only do you need to find the areas you can work with, you also need to find new ways to re-inhabit your lives together and to show affection and to communicate. I was in Boston recently and there was a couple, the husband of which had aphasia. And they reported exactly the same thing happening, that he had retained access to some of the more sophisticated words that he had learned.
KAYHow did you cope? You write in the book that you found respite in nature, that noticing a sunrise or hearing a bird helped you.
ACKERMANWell, in the beginning, all I could do is just go home and wait and wither. But I have always, in my life, transcended by going out and communing with nature. And it really helped enormously to do that. I think it's very important, though, that caregivers know that caregiving is hard and that you really have to give yourself a break, give yourself room to breathe and breathe deeply. Mediation helps a lot. Time to be out with friends and time not to be talking about your loved one who has an illness. Just time to nourish yourself as well.
KAYHow easy was it for you to focus on the present and the future with Paul and not get bitter or resentful for the things that you had lost, the past that you had changed now.
ACKERMANWell, first I must say that it is completely normal and okay for people to feel resentment and bitter about what they have lost...
KAYWe're not saying...
ACKERMAN...and anger because otherwise, you know, a caregiver can feel so guilty. All of that is normal. But I personally found that there's a big difference in a relationship if somebody is acting in a difficult way out of bad character or out of spite, and if they're acting that way because they have been injured or because they're sick. Everything calmed down in my -- the way I responded to him.
ACKERMANWe don't have any children and we used to tease that we stay together for the sake of the children, each was the other's child. And I found that I really loved mothering him and providing care. And all of those aspects of caregiving, even though I must say that there are so many other aspects of caregiving that are very, very difficult. And I shouldn't understate them because a caregiver is dramatically changed by the culture of illness, just as we're changed by the air in which we live.
KAYYou talked earlier about Paul's brain and the language and realizing that when he said the word tesseract that he was actually saying a real word, that this wasn't, as his speech therapist had said, a nonsense sound that he was making. You also write in the book about being in the swimming pool and that this was a physical environment that he found comforting or stimulating in some way.
ACKERMANYou know, I also had become aware of this when I was writing the book about the senses many years ago, that if you turn off some of your senses, you can encourage a remaining sense to really focus better. And in the pool, maybe it was because he was floating and the water was warm and he wasn't really thinking about much else, he could really pay attention. But in all fairness, I had also hired the most wonderful and cutest nursing student who is a self-described chatterbox. Very smart, great gift of the gab and she would show up each day in her bikini and swim with him for a couple of hours talking nonstop. I thought it would encourage him to pay attention.
ACKERMANIt sure did. So in the swimming pool, he really found it a little bit easier to talk. He also found it easier to talk first thing in the morning. A moment ago I said, you know, couples have to find other ways to communicate and we couldn't communicate so well through words. So I started crawling in bed with him every morning and initiating a tradition that has endured of cuddling for about, oh, half an hour to an hour every day. And in that kind of sleepy, cozy, not quite awake time, he found it easier to find words because if people have seen "The King's Speech," it's like stuttering. The more stress you're under, the harder aphasia is.
KAYI'm Katty Kay of the BBC. You're listening to "The Diane Rehm Show." And if you'd like to call us do join us, 1-800-433-8850 is the number, or send us an e-mail to firstname.lastname@example.org. We're going to go to the phones now to Dan in Alexandria, Va. Dan, thank you for joining "The Diane Rehm Show."
DANHi, Can you hear me okay?
DANGreat. When your husband had his TIA what were the symptoms of it? Because I had a TIA about three years ago and what was startling about it is -- my wife was with me at the time. Fortunately, she was driving. But I was making a phone call and I could actually hear myself talking gibberish although I thought I was actually speaking in regular language.
KAYAnd Dan, sorry, one second just before I bring Diane into this. Have you made a full recovery now from the TIA?
DANOh, yes, I made a full recovery. I've had no incidents since. I'm covered for healthcare by the VA. I take medication to alleviate that. I have like a partially -- I have a 50 percent stenosis in one of my arteries going to the brain. So I've been under care ever since then. And I do live in the fear that this is going to happen again because, as you say, you don't -- I know, in my case, stroke actually runs in my family. It just about killed two of my older family members. So was just -- I was just curious. Were you around when your husband had the TIA or was (unintelligible) ...
ACKERMANYes, I was around. And because I've always been interested in how the mind works, how the brain works, as well as how the heart works, I do find all of the symptoms fascinating, including what you've just told me. In Paul's case, he started speaking in a slurred way. And again, his eyes opened wide and he didn't have as much facial responsiveness. But the slurred speech was the giveaway. And I am delighted to hear that you've recovered. Yes, it sounds like it was a TIA.
KAYLet's go to Michelle in Rochester, N.Y. Michelle, thank you so much for joining the program.
MICHELLEI'm so grateful that you were able to take my call. I have so many connections to this story. I'm a neurologist and a neuroscientist. I actually just happen to be in my car on my way from one hospital to another. I almost never get to catch your show, but I love it when I do. And just in terms of being sort of the best and worst possible person to be in a situation like this, my mother had a brain hemorrhage, sort of a different kind of stroke than your guest's husband had, where one of the blood vessels in the brain ruptures. And I am now my mother's guardian and...
MICHELLE...just sort of observing the (word?) of her stroke, which ironically are very much connected to the research that I do on behavioral control and impulsivity. And the circuits in her brain that were affected by her stroke have very much to do with the circuits in the brain that are supposed to be helping you make good decisions. And so sort of understanding the processes of the brain, underlying what happened and observing the trajectory of her recovery and, you know, something that as part of my training, you really see only the very initial stages of what happens to someone after a stroke and then they just kinda vanish.
MICHELLEAnd to this very long term sense of the incredible capabilities of the brain to have all the other brain cells chip in and figure out who's going to do what for whom and how that can get tipped over very easily if there's an infection or she had to have surgery to have her hip repaired. And all of those things took us, you know, several steps back. But then over the course of -- I mean, it's eight to twelve to fifteen months for her to make -- regain some of the ground that she loses when she has these incidents. But the capability is still in there. So I just -- there's so many connections I have to your guest and I know the very next book that's going to be on my bedside table. And I'm so grateful that I caught your show.
KAYWell, Michelle, the book is "One Hundred Names for Love: A Stroke, a Marriage and the Language of Healing." Diane Ackerman is the author. Diane, listening to what Michelle was saying, the one thing that struck me is that actually we should realize that progress can be made.
ACKERMANAbsolutely. I'm so glad she called because, you know, we hear so often that there is a window of opportunity after something like a stroke happens. That's what I was told and that's what I read in all of the books, and it's still being taught today, that whatever you haven't regained in the first three months you're not going to. But, you know, that just is not the truth.
ACKERMANOver the last six years -- oh, I'm sorry, go ahead.
KAY...we're going to take a quick break, but I want to talk a little bit more about that and the progress that Paul has made since his stroke in 2004 just after this break. The number is 1-800-433-8850. Drshow@wamu.org is the e-mail address and you can find us on Facebook and Twitter as well. Do stay with us. We'd love to hear from you. We're going to have a quick break.
KAYWelcome back. I'm Katty Kay sitting for Diane Rehm. You've joined our program with Diane Ackerman. She's the author of "One Hundred Names for Love: A Stroke, a Marriage and the Language of Healing." It's a book about her husband's stroke, but it is also a love story. Let's go straight to the phones to Robert in Orlando, Fla. Robert, I think you have a question for Diane.
ROBERTYes. First, I tell you, this is a wonderful program and, Diane, I appreciate the information you're sharing with us.
ROBERTYou've answered a lot of questions that have been in my mind. I have a very good friend that had a stroke four months ago. He's been in a sub-acute rehab facility on Medicaid in the state of Florida. And while we have seen some progress, we were told exactly what you said, if you don't see any over three -- within a three month period, there may be very little progression. The concern that I have and his family has is that with that type of an attitude and not having that level of hope, the feedback we get from him as he mumbles to us is, it's nil. They don't put in the time. They have so many patients they have to see that we get our 15 minutes and they move us next -- to the next, you know, exercise that's being done. What could we do to speed up, improve and support his rehabilitation privately?
ACKERMANWell, one thing first is to make sure that you're in the best -- that he's in the best place for him. You know, you can go around and take a look at a few different sub-acute places and speak with the speech pathologist and find out exactly how much rehab they're going to get. But I think it's very important in that situation, if possible, to have somebody with him, somebody, a friend, family, an aide if you can hire one, because of course they don't have enough staff for the patients that they're dealing with there. And I found with Paul that it helped to absolutely saturate him with words. That was critical to his improving.
ACKERMANAnd I talked to him all day. Liz, who's still with us, God bless her, spoke with him all day long. I encouraged him to watch movies at night and television. I made up homework for him that would be more interesting, more we were saying tailored to him as an individual and things like that just to keep stimulating the language areas. But going back a moment to what you were told about recovery, important gains can be made a year later, five years later, six years later. They may not be as big as early on, but they can be so meaningful. Paul not too long ago learned how to write a check finally, how to use his checkbook, because math also had gone out the window. And I can't tell you what a thrill it was for him to be able to have control over that part of his life.
KAYDiane, tell me a little bit about the nature of the care. You suggested that Robert trying to get supplemental care. Obviously not everyone can afford to hire somebody in, but it sounded actually like in the case of Lizzie, for example, she wasn't necessarily a super expensive specialist that you brought in, but actually just...
KAY...getting somebody who can come regularly and talk, literally like you said, talk and talk and talk to the patient that that can help too.
ACKERMANYes, indeed. In fact, I know of a professor who had a stroke recently and his students have been taking turns staying with him. And there are other good reasons for this. Just because in the early stages the person -- the patient may be confused and somebody staying there overnight could be very helpful, if they try to get out of bed or something like that. Unfortunately, healthcare cost today dictate the length of time that stroke survivors are able to have rehabilitation. But just because even, you know, when they get out of rehab, that doesn't mean the rehab should stop. And because they have a certain amount of rehab when they're in a sub-acute facility, that doesn't mean that you can't be in there talking with them anyway and encouraging them to talk to you.
ACKERMANBut it's a good idea to get in touch with the National Aphasia Association. They have a website. And they can give all kinds of suggestions for how to talk with people who have aphasia, how to help them and also many links for getting in touch with caregiving organizations in the community. There are so many places out there where you can find help and support and, no, not necessarily expensive.
KAYAnd maybe, for example, a student who is studying this particular field would appreciate the opportunity also to get that kind of practical experience.
ACKERMANIt would be a godsend for them.
KAYDiane, if you had to draw a trajectory, a graph describing Paul's progress since 2004, what would that graph look like?
ACKERMANWell, it has been very slow. It was very slow in the beginning, no question about it. And then, as I said, I insisted that he just be saturated in language. But part of that, given who he was, is that when I saw he was remarkably depressed -- and by the way I made sure that he was on an antidepressant because people do get depressed after a stroke and because certain antidepressants are thought to help stimulate the memory center of the brain. When I saw that, I asked him if he would like to dictate a memoir, an aphasic memoir, an aphasic novel, and he could barely speak. But nonetheless, I had him doing that with agonizing slowness and frustration. He couldn't write longhand yet, but he could try desperately to find the words.
ACKERMANAnd all of this, just constantly getting his brain to do language, it did work, but it took awhile. And one of the things that I did when I heard him say that he was so, so sad that he could no longer remember any of this pet names for me is that I encouraged him to make some new colorful pet names. And with enormous effort he managed to blurt out one a day for 100 days in a row, which is where the title of the book comes from. And all of them are absolutely wild and imaginative. People who have aphasia very often say the wrong words and they can say very funny things. And laughter is a tonic in the best of times and also in the worst of times. And it's helpful if you can just open your mind up to the kind of verbal free for all and poetry that can come out of an aphasic's mouth.
KAYWhat were some of his aphasic names for you? What are some of his aphasic names for you?
ACKERMANWell, some of my favorites are my snowy tangdoneka, spy elf of the morning hallelujahs, my -- well, you'd have to see me to understand this, my little bucket of hair. My hair is not a hairdo. It's more of a weather system. Lovely ampersand of the morning, dark-eyed junco, my little bunco, my billiard table of the decaying gods. Where did that come from?
KAYWhere did that come from?
ACKERMANAnd I think maybe my favorite is, oh, parakeet of the lissome star. They're all really wild...
ACKERMAN...and we laugh. They're very poetic.
ACKERMANAnd I would have to struggle to come up with phrases like this.
KAYAnything like is imaginative.
ACKERMANExactly. But he also just in the normal course of life will speak in circumlocutions and I encourage him to do that. So if he -- sometimes they're extreme. He came to me one morning and asked where his cantilever of light was. And I said to him, in your velour jogging suit. He said, yes. I said, it's in the laundry room. And then we laughed because we had been together long enough that I instinctively knew the cantilever of light meant velour jogging suit.
KAYThe advantages of knowing somebody very well. Let's go to Marilee who joins us from Columbia, Mo. Marilee, thank you so much for joining "The Diane Rehm Show."
MARILEEOh, you're so welcome. This is just too wonderful. I'm a speech language pathologist and, Diane, your husband is so lucky to have you because family support is so important, but most of all, seeing that more could be done than was being done by the speech language pathologist. I just gave a talk recently on functional treatment for aphasia, which is so much more effective looking at the patient, what his interests are, not looking at...
MARILEE...cards and pictures.
MARILEEThat's just old traditional therapy that people shouldn't be using anymore. You know, Medicaid dictates that we have to set these goals and people are afraid to set goals that are out of the box, but you can measure anything. And our field has just got to get people trained that we need to work with the patient and what he can do and figure out what he's trying to say and not worry so much about whether words are pronounced right if you can guess and -- but all of the things you are doing are exactly what need to be done with the patient, let him circumlocute, let him call you by these wonderful names that he's come up and accept them, remove all barriers you can and give a lot of support for communication. We do know now that aphasia's a chronic disease like diabetes and we treat diabetes forever and we should be treating aphasia forever.
KAYWell, Marilee, thank you so much for joining the program.
ACKERMANThat was beautifully put.
KAYVery beautifully put.
ACKERMANMy hat's off to you.
KAYOne question I have for you, Marilee, now we've got you on the program is do you -- is there evidence that the type of therapy that Diane has given to Paul, which is very tailored, does produce, better is a subjective word, but, you know, does produce more results?
MARILEEYes. We have efficacy studies now that are coming out saying that tailored therapy to the patient's interests. I mean, I have my patients bring in what interests them and that's what we work on, or what applies to their activities of daily living and not pictures of somebody writing for them to say the word write. You know, that -- it's just much more effective because it's a participation level that we're looking at and not a deficit level. And I think the efficacy studies are going to certainly help us with being covered by Medicare by not doing just traditional things.
KAYMarilee, thank you so much and it was great to have you on the program.
ACKERMANThank you very much.
KAYDiane, you write in the book that Paul is happier today than ever. How is that?
ACKERMANYes. Surprisingly the stroke really has brought him a new caliber of happiness. And I think that it's based much less on striving and more on the shear of joy of just being alive and being loved and loving in return on this crazy blue planet. And we celebrate each day together and our life is not the way it was before, but we've designed a really good life for us in spite of everything. The pet names continue to flow and to flower. A recent one I like is smooth owl. And it's really a testament to how a brain can repair itself and, well, how a duet between two lovers can endure a hardship also. I say in the book at the end that a bell with a crack and it may not ring as clearly, but it can ring as sweetly. And that is what one has to search for I think after a catastrophic illness in the family, a way to continue the everydayness of your life with grace and appreciation and patience and love.
KAYI'm Katty Kay. You're listening to "The Diane Rehm Show." And if you'd like to join us, please do call 1-800-433-8850 or send us an email to email@example.com. We're gonna go to Ann in Northville. Ann, thank you so much for the program and thank you for your patience in waiting for us to take your call.
ANNThank you so much for taking my call. Hi, Katty and hi, Diane.
ANNAnd what a pleasure to be able to talk to you. I have been a fan of Paul West forever. I came from Eckington also.
ACKERMANOh, my heavens.
ANNMy mother was a border at Ruthin School where Paul's mother taught piano. I went to Eckington Grammar School where Paul went and I still communicate with his cousin, Marion, and love, love all of Paul's books. He's a master, what a master, and I think in his own way still is of the English language. And I love your books, too, Diane. I wrote to Paul back in 1997. He was kind of enough to write me a very nice letter back which I still have. It's one of my treasures. I want him to know that I am really wishing him well, still loving his books and loving yours, Diane. I went out and got a bicycle after I read one of them. You probably know which one.
KAYAnd, Ann, what is your last name?
KAYOkay. So perhaps, Diane, you could pass those good wishes. And, Ann, thank you so much for calling into the program.
ACKERMANYes. And also...
ACKERMAN...thank you so much, Ann. It's nice to hear from you. And if people wish to...
ANNGood luck to both of you.
ACKERMANThank you so much, and to you. If people wish to contact me, I have a website...
ACKERMAN...which is just www.dianeackerman.com.
KAYDiane, you write at the end of the book -- you have a post script and it is titled "Lessons Learned." What have you learned from this process about you and Paul and about the brain and about the process of caregiving?
ACKERMANWell, first of all, number one is have hope. The brain is resilient. It's, yes, an awe inspiring mystery, but, as I said, you can improve function for years afterwards, so have hope. Remember that every stroke is different and your loved one may improve quickly or may improve slowly. Remember that depression is normal and look into antidepressants. Rest if you're a caregiver, that's so important. And I confess I didn't get enough of it and I didn't reach out for help to friends as much as I should have I think either.
KAYBecause the caregiver's more effective if they are rested and help themselves.
ACKERMANAbsolutely. Caregiving is very hard. It's a full-time occupation. Ask for help. There are many social services in all locales. And you'd be surprised how many specific to the problem that your loved one has you can find. And you may meet really wonderful people there in the process. Well, accepting is important because your loved one is different than the day before this happened, but he or she is also the same person, simply on a different trajectory of their life. You know, Paul and I have now been together 41 years and people sometimes say, well, how have you stayed together that long, been married that long? And the answer is that it's not one marriage. No marriage of that length ever is. It's several. Your life changes and so on.
KAYAnd that I think is something that everybody can learn from stroke or no stroke. Diane Ackerman, the author of "One Hundred Names for Love: A Stroke, a Marriage and the Language of Healing." It's been a pleasure having you on the program.
ACKERMANThank you. I've really enjoyed it.
KAYI'm Katty Kay sitting in for Diane Rehm. Thanks so much for listening.
ANNOUNCER"The Diane Rehm Show" is produced by Sandra Pinkard, Nancy Robertson, Susan Nabors, Denise Couture, Monique Nazareth and Sarah Ashworth. The engineer is Tobey Schreiner. Dorie Anisman answers the phones. Visit drshow.org for audio archives, transcripts, podcasts and CD sales. Call 202-885-1200 for more information. Our e-mail address is firstname.lastname@example.org and we're on Facebook and Twitter. This program comes to you from American University in Washington. This is NPR.
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