Spouse's Dementia Leaves Poet A 'Strange Relation' When poet Rachel Hadas' husband George began showing signs of early-onset dementia, literature became her life line. Not to soothe and console, but to make her sit up, pay attention and re-evaluate her experiences.
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Spouse's Dementia Leaves Poet A 'Strange Relation'

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Spouse's Dementia Leaves Poet A 'Strange Relation'

Spouse's Dementia Leaves Poet A 'Strange Relation'

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This is TALK OF THE NATION. Im Neal Conan in Washington.

After almost 30 years of marriage, poet Rachel Hadas realized she had a fascinating new man in her life: Her husband George had begun to sink into the sullen silences of early onset dementia and became quite a different person.

She turned to literature - yes, to books about his disease but also to classics, like Henry James' "The Portrait of a Lady" and Shakespeare's "Hamlet," which she re-read in a new light. She re-read Greek myths and poetry, the work of Robert Frost, Emily Dickinson, and some poems of her own.

One of them, "Two Silences," parallels the comfortable silence that often exists between lovers with a different silence, not the full silence of a sun-warmed furrow, countless minute processes at work, tunnel, ramifying, reaching out, intensions, connections and adjustments. Make a note, look up, smile, meet an eye then turn back to the task, the blessing of the sun, the heat of thought, but empty silence, intermittent wind. Sights around the corner of a crumbling stucco wall that struggles between the last few houses and a sea. New, no color, a horizon where past and future in one flat line meet, gaze, a diluted blue, lips firmly shut.

Poems like that became faithful companions, not to smooth or console, Rachel Hadas wrote, but to make her sit up and pay attention.

If you're in a similar situation, what do you turn to, which art and why? Our phone number is 800-989-8255, email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Poet Rachel Hadas joins us now from our bureau in New York. She's a professor of English at Rutgers University. Her latest book is "Strange Relation: A Memoir Of Marriage, Dementia And Poetry." And it's good of you to be with us today.

Ms. RACHEL HADAS (Author, "Strange Relation"): Thank you very much. I'm happy to be here.

CONAN: And how is your husband George doing?

Ms. HADAS: He's pretty stable, thank you. He has a slow version of a disease that is usually quite slow. And he's been in the same facility for two and a half years. And I think he and I are both kind of comfortable with the status quo, if I can put it that way.

CONAN: That poem I just read, it's interesting, "Two Silences." You wrote that before George was diagnosed. Yet in retrospect, it says a lot.

Ms. HADAS: My poems have always known much more than I know. At the time when my mother was ill many years ago, I sort of knew that. My subconscious appears to be smarter and much braver than the rest of me. So poems are a good criterion, a good kind of weathervane of what's going on.

CONAN: And you also said you write a lot. Your poems tend to come from your dreams.

Ms. HADAS: Yeah, I talk in chapter two of the book about a little poem I wrote and then forgot about based on a dream where my husband was sitting in a chair, and I was scurrying around the room. And even though the poem was published in The New Republic and collected in a volume, I forgot about it. It didn't seem important.

Then reading it again, I was struck with this kind of dread. Shall I read the little bit of it I include in the book?

CONAN: If you would, yeah, thank you.

Ms. HADAS: You were sitting in your armchair, surrounded, almost submerged, by drifts of paper, mail, piles of it, and almost all for me. The heap seemed festive, Christmas lavish, wasteful. I fished a letter out almost at random then scurried to the atlas, found the map so I could show you where I would be going.

And then I go on to say in prose: So much of what would happen, of what had already slyly begun to happen, is here. George, who had always had abundant physical energy, is depicted immobile in his chair, and I am scurrying around, bringing the world to him and saying: Here's a map of where I'll be going. How amazing that I knew all that.

CONAN: That you knew all that. It's interesting. You also wrote: I chose to marry George, but I never chose the way our lives would turn out. I did, however, choose to be a writer, and, though squeezed by the conditions of my life, I am still in charge of what I write.

Is that one of the reasons your poetry became so important?

Ms. HADAS: Oh, absolutely. Poetry has always been a way of coping for me. As I say in the prologue, since my father died when I was 17, I've turned to poetry not only to express my feelings, which is why most teenagers turn to poetry, but consistently to figure out what I was feeling at a given time.

And George's disease presented an enormous cognitive challenge not only for him but for me. I said to the first neurologist of several we consulted: It's a steep learning curve. And she said: It's 360 degrees. Or it's a sheer wall, or whatever. And poetry helped me to be a little less stupid as I stumbled through the process.

CONAN: It was also the, I guess, obvious revelation that you were not the first to go through this.

Ms. HADAS: Yeah, I mean, intellectually, you know this has happened to other people. But it's immensely lonely as you live it. The particular kind of dementia George probably has, which may not be Alzheimer's but something more murky called frontotemporal dementia, is terribly lonely and confusing to live with. People don't understand it.

And it's enormously reassuring to realize not necessarily that other people have coped with this disease, though they have, but that they've coped with things that are just as hard or harder.

And having read and taught Greek tragedy since I was in my early 20s, I really should have known this, but it takes a lot to make us pay attention.

CONAN: And Greek tragedy and Greek mythology, too. You talk at the end of the book about the myth of - and I hope I'm pronouncing this right - Tithonus. Is that right?

Ms. HADAS: Tithonus.

CONAN: Tithonus, okay. Tell us what that is and why it became important to you.

Ms. HADAS: Okay, there's a wonderful story first told in one of the "Homeric Hymns," which are very ancient poems, that the goddess of dawn fell in love with a handsome mortal, Tithonus. And so that he could be her lover forever, she asked for eternal life for him. But she forgot to ask for eternal youth.

So he became eternally aged. What a horrible idea. And he finally shriveled down to something like a grasshopper. This is not all that well-known as Greek myths go. Homer refers to it. Tennyson has a beautiful poem called "Tithonus," and other poets have returned to it.

And not that George will live forever, it only sometimes seems that way. Not that he is that old, but there's a kind of cruel timelessness in the situation.

CONAN: Also that in various imaginings, it's what the goddess does with the husk of her former lover.

Ms. HADAS: Yeah, I will read this from my chapter "Tithonus." Let's see: The goddess is not only immortal, but she's the goddess of dawn. So she's eternally youthful and dewy, reborn to radiance each day.

And then what to do with the eternally aging Tithonus? The Homeric hymn, probably written about 800 BCE, minces no words. As long as he is youthful and attractive, we are told, the goddess shares his bed. When he begins to show signs of age, she no longer sleeps with him, but she still lives with him, and she, quote, "pampered him with food and ambrosia and gifts of fine clothing," unquote.

Ironically, ambrosia is the food that the gods eat in Greek mythology, and it bestows immortality. Finally, though, faced with a very old man, the goddess of dawn opts, as so many wives or spouses do, for what is euphemistically called placement.

And this is how Chapman, the Elizabethan poet whom Keats refers to in "On First Looking Into Chapman's Homer," describes it in his translation of the Homeric hymn: Her counsel, then, thought best to strive no more but lay him in his bed and lock his door. I really sat up and swallowed my gum when I read that.

(Soundbite of laughter)

CONAN: And did you read that before or after you had decided to put George...

Ms. HADAS: I read it after. He was probably already there. Things kept popping up and hitting me in the face that I had read before. And I quote in a chapter called "Readings in the Kingdom of Illness" from a terrific essay by the novelist Allegra Goodman called "Pemberley Previsited," where she compares re-reading to unfolding.

She says: Like pleated fabric, the text reveals different parts of its pattern at different times. I mean, I think that anything that's worth reading is worth re-reading. You just have to read it the first time and miss most of the point, and then you come back to it.

CONAN: And then come back to it. And you also re-read a lot of classic novels, from Dickens to a lot of other things. Did you pick them out for any particular reason, or did you let your subconscious lead you to them?

Ms. HADAS: I'm very seat-of-the-pants. It's the latter. It's not so much that I said: Okay, I think I'm going to re-read "David Copperfield" now as that I though George's behavior around piling up pages of his essays in our apartment reminds me of Mr. Dick in "David Copperfield," not a character a lot of people even recognize.

But pretty clearly, Mr. Dick has frontal lobe issues. I don't know that it's worth reading the whole thing, but it's just startling when things come back and kind of hit you.

CONAN: And it may be that they play a bigger part in our lives. It's just that we don't see them quite right when we read them outside of that context.

Ms. HADAS: Well, the wonderful thing about literature is that literature helps us to live our lives, and life helps us to pay attention to literature, and it's a feedback loop.

I think if I could, Neal, I will read a short poem by the great Alexandrian Greek poet Cavafy.

CONAN: Sure.

Ms. HADAS: Which I quote in a chapter called "Ambiguous Loss." This is a good example of a poem that I had always loved but that took on a new layer of meaning for me. It's called "Walls."

Ms. HADAS: With no consideration, no pity, no shame, they have built walls around me thick and high. And now I sit here feeling hopeless. I can't think of anything else. This fate gnaws my mind because I had so much to do outside. When they were building the walls, how could I not have noticed? But I never heard the builders, not a sound. Imperceptively(ph), imperceptibly, they have closed me off from the outside world.

That's translated by my former teacher, Edmond Culie(ph). And clearly those walls beg for a figurative reading. And you could say they're depression or old age or illness, isolation. But this time around, the walls looked to me like dementia.

CONAN: It's interesting. Cavafy - "Ithaca" is probably his best-known poem.

Ms. HADAS: Yes.

CONAN: But it's the - that takes old age in a rather sunnier light, I think.

Ms. HADAS: Definitely. Well, and I'm not saying that Cavafy intended old age. You know, the intention - I like to say to my students that a really successful poem floats free of its occasion and floats free of any intention, I mean - and not only poems.

For example, in Hans Christian Andersen's creepy, wonderful story "The Snow Queen," the splinter of ice in the child's heart and the child's cold, heartless behavior looks like the behavior of someone with frontotemporal dementia. But presumably, that's not what Anderson intended.

CONAN: Probably not. Probably not. Rachel Hadas is our guest. Her book is "Strange Relation." We'll have more with her after this break. If you are in an extended situation like this, what do you turn to, what art? 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: This is TALK OF THE NATION. Im Neal Conan in Washington.

When Rachel Hadas took her husband George to a doctor's appointment in 2004, she already knew something was wrong. She just couldn't yet call it dementia. After that evaluation, when George couldn't recall simple words or the year they'd been married, she realized she had become the sole guardian of George's entire life story.

You can read more about what she learned that day about George and herself in an excerpt from her book "Strange Relation" on our website. Just go to npr.org, and click on TALK OF THE NATION.

Writing the poems in the book, as well as reading classics like Homer and more modern works like those of Philip Larkin, helped her to come to terms with George's slow slipping away.

If you're in a similar situation, what do you turn to and why? Give us a call, 800-989-8255. Email us, talk@npr.org. You can also leave comments and read what worked for other listeners at our website. That's at npr.org. Click on TALK OF THE NATION. Let's go next to John(ph), John with us from Muncie, Indiana.

JOHN (Caller): Hi. I just wanted to say that, well, you guys were talking about how art is kind of like a consolation at times. And in particularly it struck me, she mentioned dreams, and I've got two grandparents that are ailing right now. They're both in their late '70s. And I frequently worry about either one of them passing away.

And I had a dream the other night about something that happened to me when I was a kid, and this - I was fooling around with my cousin, teaching him how to swear, and my grandpa came over and slapped me in the face with this bear-claw hand, and I wrote a poem. I don't know if you guys have time to...

CONAN: If it's short, go ahead please, yeah.

JOHN: Okay, I'll try to give you the abridged version. When I was still as young as someone who thinks it's funny, I was teaching my cousin to swear. Say hell, I said. Hell. And at that, I heard a tyrannosaurus charging in from the kitchen. My papa had heard everything and knew one way to correct the situation.

A cinematic-sounding slap numbed the left side of my face, and lightning ran through my blood where the sting set in. An invisible canyon he created took the shape of a bear claw on my face.

Oftentimes, after that, I'd hear a cliched tougher back in my day and remember that hand, one made of long shifts of factory work, whittled out of oak and marbled with iron.

So anyway, I don't know, I...

Ms. HADAS: That's very nice. I mean, so this is - this is a dream you recently had with the tyrannosaurus?

JOHN: No, well, you know, it was like we were in my cousin's bedroom, and the kitchen is right off of that, and he was doing something in there. I think he was doing the dishes.

And he was a big guy, kind of - I would describe him as kind of like a gentle giant. But when he saw something going on, he would not hesitate to respond pretty quickly. And he gave me probably like the hardest slap in the face that I've ever had in my life.

And I just remember thinking to myself, like, yeah I love Papa, but I was still - there was like this - I would always kind of tilt back to that moment and think: Well, I'd better not screw around. I know he means business, that kind of thing.

CONAN: Interesting, John. You're speaking of him in the past tense.

JOHN: Yeah, well, you know, I don't know if it's people from that age group or the Depression-era or whatever, but it's - I watch them eat, and he's got this big beer gut right now already, and they just, you know, lather everything with butter. They salt everything. And I just - it's - I don't know, it's terrifying, like a ticking time bomb, almost, you know.

CONAN: Thanks very much for the call, John, appreciate the poetry.

JOHN: Thank you.

CONAN: Bye-bye. It's interesting: Some people might say that their first inclination would have been to find something to escape to, either, you know, the "Law & Order" marathon or, you know, a lot of detective novels.

Ms. HADAS: Yeah, some people have even said to me: I don't want to read your book because the subject matter is too painful. Or my mother had Alzheimer's, so I don't want to read it. Other people say the opposite.

But, you know, it's - we're all on the same boat. We're all going to the same place ultimately, in my view, and it's not that everybody has to read it, but I have always wanted to know and wanted to say.

I mean, early on, very early on I lost any illusions that there was any hope for a cure with George's disease. But I wanted to know more about frontotemporal dementia.

And some people said to me: Why do you want to know so much? It's so depressing. But I think that there's a power in knowing, and certainly for me with my love of language a power in naming.

When we even had a differential diagnosis, I felt much better, although finally, we won't know. I've had to accept the murkiness of the situation.

But for escaping, escaping is okay for a little while, but it finally will weigh on you again. You just have to get used to what my friend the poet Molly Peacock calls - I quote her in the book - the double track. You can ignore the problem for a while, if you're lucky, but it's going to come back. And it actually feels better to face it.

CONAN: Let's go next to Catherine(ph), Catherine with us from Minneapolis.

CATHERINE (Caller): Hi. My husband was diagnosed with Parkinson's when our youngest was 11 years old. We'd been married 21 years. And our courtship had been to and from choir practice.

And so he's going to have this disease a long time, and it will take his voice eventually.

Ms. HADAS: I'm so sorry.

CATHERINE: But we sing, and every opportunity we have to be in a choir together, we sing. In church, we'll trade off parts. For every hymn, we trade the verses around, and I'll sing tenor, and he'll sing bass.

And it just reminds us that that's still there. You know, he can use it while he can.

Ms. HADAS: That's really a lovely story, thank you. Absolutely, do it while you can. It's not going to get better, and your taking the tenor or something is very nice.

I listen to music a great deal with George. He cannot speak anymore at all. And we listen to music together. And it was he who taught me to listen to music and sit down and pay attention. He was a composer. He played the piano and, as a family member of mine said: Music was his best language. Long after he had ceased, almost ceased talking and reading and writing, he could still play the piano somewhat. He has a CD coming out in the spring, I'm happy to say, and music is a great blessing.

I wanted to mention, in connection with this last call, that I've become active in a terrific organization called Well Spouse, just wellspouse.org, which is for spousal partners and caregivers across the country.

Considering how many there are of us, I don't think the organization is as well-known as it deserves to be, and helping other people is a well-known way of making your own burdens feel lighter.

That is not something I devote a whole lot of attention to in the book, but it's been extraordinarily important in my own life. So hello to all well spouses out there, and please do check out the organization. We run local support groups, and we need more members.

CONAN: Catherine, thanks very much for the call.

CATHERINE: Thanks for the show.

CONAN: And we wish you the best of luck.

CATHERINE: Thank you.

CONAN: Here's an email that we have from Kevin(ph) in Grant's Pass, Oregon: I am part of a group of friends now going through the loss to cancer of one of our companions of many years. I was helped this morning by Rilke. The quote our deepest fears are like dragons guarding our deepest treasure spoke to me of the flip side of suffering, lots of meaning in a few words.

Ms. HADAS: Thats a great quote. I had not known that quote.

CONAN: A new chapter, perhaps.

Ms. HADAS: Yeah, yeah, absolutely. I mean, I am continuing to write more essays. Somebody said to me: What is the sequel to this book? And I don't know that it needs a sequel, but the essays I'm writing now are much more about happy memories of my life with George in the '80s, and a lot of them do involve poetry and music.

For example, he loved the poems of Gerard Manley Hopkins and set them. And I also helped him find titles for a couple of his pieces from works of literature. He would say: What would be a good title for this? And I would suggest something.

So I feel as if art in some ways is the gift that keeps on giving. It - I found that, for example, in the early stages of his disease, which were very difficult, poems were patient. They were there when I needed them. They did not give me unwanted advice.

(Soundbite of laughter)

Ms. HADAS: They could wait until I paid attention to them. They were never angry at me. And if I didn't want to pay attention to them at that moment, that was okay, too. And I continue to feel that.

CONAN: I meant to ask you about that part of the illness. And of course, we're familiar with it from Alzheimer's, but that victims can lash out at times. And in fact, the first time you took George to that diagnosis and returned with him, and there was his inability to remember those three simple words or the inability to remember, within a decade, of when your marriage was, and you asked him, you know, how could he make a mistake like that.

Ms. HADAS: Well, I didn't really say how could make a mistake like that, but I very tactlessly said: You know, when the doctor asked you about your interests, and you said tennis, chess and reading, you know, you don't do those things anymore. So that wasn't really true.

And I soon learned not to turn to him as if he was an authority about anything concerning himself. But I still in some way wanted to be consoled. And I had to wean myself completely from that, which took years.

And he said, in effect: You make me angry. He was blaming the messenger of the bad news. And he was - for a while, his default mode was kind of anger at me or anger at the process. And medication helps with this. The process - the passage of time helps with this as well. And there are many people with this illness who are far more agitated and dangerous than George, but he's a big man. He's almost 6'4".

And there were times when I did not feel totally safe. It's deeply confusing. The whole process is exhausting and confusing. But partly, because it's so slow, you kind of get habituated. You learn...

CONAN: You wrote that, sadly, it becomes the new normal.

Ms. HADAS: Yeah. Well, the phrase the new normal, exists for a reason, although I want to be very careful. I mean, one of the neurologists said to me - she used a simile that I did not care for. She said, you know, it's like moving into a new house. You unpack your boxes and you make yourself at home, and you haven't really done that with George's illness yet. And I thought, wait a minute. That's not really a good simile. That's not a house I can live in, finally.

So in chapter called "Similes," I talked about some similes that are useful and some are not. For example, a useful simile for me was that on a good day, a person with dementia will be a little clearer, maybe for an hour or 15 minutes. And it's like the sun coming out on a cloudy day and you hope that the weather will change, but, actually, the sun will go back behind a cloud. That I found more helpful.

CONAN: Here's an email from Courtney in Little Rock: I'm a 38-year-old wife, mother of two and public defender. My mother was diagnosed with Pick's disease at 63 in 2007. My mother was a businesswoman, fabulous wife and mother who did not began painting until her diagnosis. This is a great outlet for her. Paintings have hung in the Arkansas governor's mansion and various galleries around town. She's really talented. The brain is an interesting thing. I, on the other hand, find that writing daily helps me keep focused.

Thanks for covering this tough topic. There are a lot of us out there dealing with this devastating diagnosis, yet life goes on, and I try to find the good in every day.

Ms. HADAS: Absolutely. Thank you for that. Pick's disease is one name of frontotemporal dementia. It's extremely confusing. It doesn't have one name like Alzheimer's, and it's less known. And to muddy the waters, there are a lot of related diseases like corticobasal degeneration and progressive supranuclear palsy. But anyway, Pick's disease is what it's sometimes called - not so much anymore, I think. And some people with disease - as their ability to use language deteriorates - do, indeed, become more artistic.

There's a doctor in San Francisco, Bruce Miller, who has written about this and has curated a show of paintings by people with Pick's disease. Unfortunately, it's not always the case. I mean, it would have been nice if George had been able to start painting or continued composing. It did not happen.

The thinking now is that the composer, the French composer Ravel had frontotemporal dementia. At a certain point, he developed dysgraphia. He said, the music's in head, but I can't write it down.

Very touchingly, George said to me once, I think I'll be able to go on composing because that comes out of my own head - i.e., he couldn't remember things that came from outside, but he would be able to go on doing something that came from inside. But this cruel disease has meant he cannot do that, either, anymore.

CONAN: We're talking with Rachel Hadas about her book, "Strange Relation: A Memoir Of Marriage, Dementia and Poetry." You're listening to TALK OF THE NATION, from NPR News.

Let's go to Coyote(ph), Coyote with us from St. Louis.

COYOTE (Caller): Yes. I am a poet and a writer and also a visual artist. And the roots of that really did begin in a childhood that was quite lonely and troubled. My brother was schizophrenic, is schizophrenic. And my father was alcoholic when I was very little. And I, you know, was alone a lot. And when people were around, they were often scary, and the home life not stable.

And I found that reading - just when I was very, very little - just starting to read even when I was three, four years old, reading "Peanuts" and then, as I got older, reading the classics and - at nine, 10 years old reading the Bronte sisters and Austen and Dickens was such an incredible escape that I found, when I would put a book down, I would miss the characters and I would want to continue the story in my imagination. And that's when I would start to write. And that's when I began - also began writing poetry and won my first competition when I was 16.

But I find now, as an adult, I - when I can - I'm self-employed as an artist. And find that, you know, you don't make a lot of money. And I do try and a help homeless shelter out that's in our community.

CONAN: Mm-hmm.

COYOTE: And what I like to do is, always, at the end of the year, holidays, Christmas, Kwanzaa, the Hanukah time period, I always want to get the children books and coloring books because I feel like that you can pack up and in a small bag. You can take that with you. It's art that can save your soul and hopefully save their soul, you know, in a way that it saved mind.

And, you know, especially in the visual arts, even from small, I loved paintings and the stories that they would tell. And our art museum here is a world-class museum, but it's free. And I could go and I could look at Van Gogh and be transported. And I want to give that to them when I can. And I go to the dollar store and I just buy a bunch of coloring books and a bunch of packs of crayons. And then also, sometimes I get help from the bookstores and get books. And I feel like no matter how chaotic their life is, they can - that's easily travelable things that they can take with them.

CONAN: Mm-hmm.

Ms. HADAS: That is a totally lovely story. Thank you. And reading is such a sheltering thing to do for yourself or for someone else. What an adaptive way for you to deal with a really difficult childhood. I mean, you could have done a lot of other things.

COYOTE: Yes. Yes.

Ms. HADAS: The poet Philip Larkin, whom I love and whom I quote in the book, wrote rather negative, said poems. And he famously said somewhere: Even writing a very negative poem is a very positive thing to do. You know, you're taking a gun and shooting somebody.

(Soundbite of laughter)

COYOTE: That's right. It really is. It really is. It is...

Ms. HADAS: And you never know when it will reach out and touch someone, like that wonderful Rilke quote we heard.

CONAN: Yeah, yeah.

Ms. HADAS: And I read to George a lot now, because the silence, when he was first institutionalized, was terrible. I tried to make conversation about sports, which I'm not interested in, politics, which depresses me. I was afraid to talk about things like our cats at home, because I was afraid that would make him angrier than ever that he was in an institution. And all of that is -I don't try to talk about those things much. I read him poetry.

CONAN: And Coyote, thanks very much for the call, and keep working.

COYOTE: Thank you so much.

Ms. HADAS: Thank you.

CONAN: And Rachel Hadas, thank you so much for your time today.

Ms. HADAS: Thank you. It's been a great pleasure. Thank you, Neal.

CONAN: Rachel Hadas is a poet, a professor at Rutgers University in New Jersey and the author of "Strange Relation." She joined us from our bureau in New York.

Coming up after a short break, from the "Axis of Evil" comedy tour to "Brown and Friendly," comedian Maz Jobrani joins us. Stay with us.

I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.

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