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tv   Talk to Al Jazeera  Al Jazeera  March 20, 2014 1:30pm-2:01pm EDT

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documents will be available online. thank you for watching al jazeera, in new york, techno featuring mystery writer martin smith is next. check us out 24 hours a day just by going to >> i did not want to be a writer with parkinson's, i just wanted to be a writer. >> for 18 years novelist martin cruz smith did had a secret. a disease was attacking his brain, affecting his writing. >> i have wires in my head. >> with his wife emily and technology
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known as deep-brain stimulation, the author of "gorqy park" relies n electrodes. i talked to them both. >> bill, you were diagnosed with parkinson's since 1995 and kept it private. why is that? >> just a sense that there was a weakness in the public persense of who i was. i didn't - american men don't like being weak. we regard anything that suggested that we are not on top of our game will be - will work against us. the idea that to some degree to
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have a hidden and public figure exacerbated that. >> what was life like in 1995 otherwise for you? >> i was a superb athlete. [ laughs ] >> bow hunting. >> no, i had what we would say about as good a life as one could have, with this one hiccup which i was starting to shake. >> that was the first sense you had of it. is that how you found out? >> the first sense i had was i was going to thanksgiving dinner at a friend's house, and as i was walking - headed down there with another friend, also a doctor, he said, "why are you - why aren't you swinging your arm? why aren't you swinging your right arm?" and i said "i didn't notice i
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wasn't", he said, "move your arm this way, move your arm that way." he said, "you better see parkinson's. >> that was a tough thanksgiving dinner. from there on, you know, once you are aware of something like that, you are superaware of it. and that progresses to the point at which you really are shaking. and then that becomes your life. you become - you know, you are against your arm. you are against the tremor. >> what were the first indications that you noticed? >> the arm was noticeable, him. >> how did it affect your day to day life? >> it runs your day to day life. for me the big thing was the tremor, i was constantly digging my hand into my pocket.
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holding it in. the trademarks of the pose. anything that sort of holds your arm down. >> and the typing. >> the typing was ridiculous. not only was a typing badly, but i was hall usinating. not scary, but entertaining. like i would imagine that little black tornados were coming out of the keyboard >> i think a lot of people would be frightened by that. >> it was more entertaining. or i would have a cat across my lap >> that didn't exist. people. >> right. >> the shake - it would shake their foundation of who i am. you. >> i would leap out of bed ready to fight.
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>> wow. >> and it was - that was scary, because i was - i was pummellin em or i was on the floor wrestling bed. >> yes, or he'd think i was a tiger and try to strangle me. and he threw himself out of bed. that's the first time. >> that's when you say, "it was a bad dream.". >> and we had all sorts of reasons, he's too much into his book >> this was before your official diagnosis, you began to leap out of bed. do. >> i could do anything. ? >> because i have the electrodes running into my brain. that's why it's called deep brain stimulation. >> you had a surgical procedure
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device. >> that's right. >> how did you learn about the procedure or decide to do it. >> my body decided to do it. i heard a little about it. i was propelled by it. the chance - a frankenstein monster. it will challenge your ability to function. so at the beginning of it i was not responding to medication. everybody, you know, you find out everybody is an individual. i tried a variety. >> tell me the difference between who i'm seeing sitting in front of me for half an hour and a year ago. now, looking at you, i'm not sure i could detect. >> you would detect, because i would be fighting that and that
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is more than just the trem junior you were fighting. because it's tremor, you are all the time conscious of it, trying down. >> i can move and do things about 100% of who i was. i'm 71 though. >> so the deep brain stimulation procedure. >> i was in my '60s by that point. i'm 71 now. and there was there was this window, you know, cut off at 70 when you can have this operation and have a good chance of success. so the way not to fight it is to keep it to yourself. and i've seen - and i saw people
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at the neurologist's office who had it, that had been let out of gaol. i wanted that. >> tell me about what is in your head, and how it's working. how is it functioning. >> it's like a pacemaker here, a neurological pacemaker. wires go offer the head, through the skull, deep into the brain, into part of it which is producing dopamine and there it sends a regular signal - a regular amount of dopamine and here is where my weak spot is. i was bad at maths and science. both. >> yes. here i am, you know, talking
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about something - an operation that is - it's mysterious, actually. maybe i'm making - putting myself down too hard. i will always love that. because in a way that it's really not very well-known, exactly why this works as well as it does. i mean, there's so much study to be done on the brain that in 50 years i can well imagine this not being the situation at all. >> the treatment is so general, blanket. >> they are different targets in the brain to aim for. one you aim for a person depending on his personality and the skills, word skills or search and memory recall. so you can - so one person will
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have one target, another person another. since i'm basically a verbal person, there's one target for me that may be different for another person. em, you were going to say -- >> i don't think the neuroproduces dopamine, i think it regulates the action. >> this is what happens when you are a writer. now you know. >> i know. boy, yet here you are getting along as well as you do. perhaps your new work will be much more scientifically accurate. what are you able to do now that you have deep stimulation than you could a year ago? >> i couldn't do this. >> your hands would shake. >> my hands would give me away. >> you woke up. >> no, they turned the juice on
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after a couple of weeks after the implant. they wait two weeks, then turn the juice on. . >> describe the moment when you turn the juice on. >> the moment is i lifted my hand, shaking. they turned the juice on. >> flipped a switch and suddenly your hands are still. >> exactly. >> must have been a wonderful moment. >> it was stupendous. >> then he was walking down the hall. he was walking straight. it was a wonderful moment. >> you are
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>> these protestors have decided that today they will be arrested >> these people have chased a president from power, they've torn down a state... >> what's clear is that people don't just need protection, they need assistance.
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>> you're watching talk to al jazeera. martin smith, who's written a new novel, while on parkinson's. you were on a cocktail of medications. were they effective at first? >> i don't think they were particularly effective. and i certainly would have preferred to have just taken pills instead of having an operation on my brain. and another fact, this has had an effect on short term memory. so if occasionally i will blank out when you've asked a question, you're waiting for me to come to an answer, i'm
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sorting through empty file cards. there were words on all those file cards, on those index cards. i can't find the word for index or file or card. >> it must be maddening. >> it is very mad nipping. i'm not coming up with the first word, the usual word you use for that, the usual phrase, i'll have to create another phrase. which no one ever used before so i occasionally it is a happyings impinge. >> you have in these tools that were available, that have disappeared, you have to relearn the language in a way. >> or remake it. sometimes when you remake it, it's kind of interesting. but more often than not you're struck dumb. really dumb. >> when did parkinson's first affect your ability to write? >> well, to a degree for ten years probably. but i've always been a spectacularly bad typist.
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>> that's too bad! >> so parkinson's wasn't that noticeable for a while. but there came a time when i sort of banged my head against the wall in trying to bang the right keys. that is the point at which i didn't suggest -- ann said she would be willing to take dictation for the first time. although she has been my first editor and best editor. >> how did you summon the patience and the -- >> well, to begin with, i looked out the window a lot been sentences and then i devised a genius system of putting my new yorkers next to me and i just flipped through the pages while bill was thinking. but actually: the words came pretty quickly. and whole sentences. i was amazed. >> i would think as the scribe of someone who is trying to
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re-learn the process, there would be a terrible moment of watching and waiting for sentence that would then make you self-conscious. i can see the situation imploding if it were handled the wrong way. >> off oh, it's full of the quungs and confusion and mutual reluctance. >> i was amaze ed he could do it. he kind of did it right off the bat. the ideas would go right ton page without him being conscious of typing, right? and then to have that extra step in there, which is me. i thought was going to make it impossible. but actually, the write was just the same. and whole, beautiful sentences. >> wow! did that teach you something about the way that you write? i mean it's always --
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>> taught me something about the ability to just put one's own life aside and engage entirely in somebody else's work. so i would not recommend it to most couples. not couples therapy. >> no, i can see it going very wrong. >> but i love it. it's really enjoyable for me and i miss it when we're not doing it. >> and is the -- do you then say okay, read that back to me? i don't know what your process is like but do you edit as you go or do you try and get it all down in one go? >> i have a lot of difficulty leaving a sentence un-done or half-done and always have had. while i'm right at it, sitting side by side and sort of hovering over the screen . so i can plate much see what's going on. >> tilt the screen that way so he sees it as i'm typing. >> and then sometimes she would
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tilt it back. >> also walking behind me. >> tell me about the situation to then tell the world. >> well what struck me was that the degree of defeat, sense of defeat in people who were in parkinson's. and people who die in complications of parkinson's. i want to know, in spite of the fact i might be foretelling my own obituary. but judge like right now, i'm just skipping a beat. little bit like a record, needle skipping a beat. so i have to go back and reconfigure what your question was. >> yeah. so -- and you -- >> and that happens to us when we're working all the time. >> sure.
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>> because i have to give it to em, then i have to remember it, what i said, then she'll-then i'll ask her to read that back. all the time, acting as if i'm really thinking when in fact i'm just trying to remember. >> the pressure to act as if you're not affected are by it, must be very, very strong. that idea that you're going to pretend that everything's fine. >> yeah, and that's the way it is with other people who have parkinson's. it's in many ways a hidden disease, resisting it, they have to say to somebody else, oh by the way, i've forgotten your name, what is your name? i'm sorry it's the parkinson's. >> how big the is the blank spot moment? do you forget everything about what you're doing or who you're with or is it -- do you have a sense much i'm in this room, i know these people, i can't
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remember what we were talking about? >> there it is. it is the key, i know the door is there and i know the people on the other side of this door, this key. >> but which one of these keys is it? >> yes. and so i know that -- other people have the same reaction and there was a sort of hopelessness that i felt about the situation. especially when the meds weren't working. and i -- and it struck me that other people had the same thing. and i was certainly not going to talk about it until there was a chance of saying something positive and worthwhile. people didn't know about deep brain stimulation. >> explain why you suddenly were able to tell the publisher. >> yeah, yeah. >> well i didn't want to tell the publisher, i didn't want a reaction from him that was mixed at all. i wanted to act simply as a
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writer submitting a manuscript to the writer. i wouldn't say, by the way, i would have submitted something else if i could have remembered the words. i wanted a pure submission of the story. >> you didn't tell him until you submitted the manuscript? >> all the writer hopes an editor is going to say, well, good now that you've given me your reaction, i can tell you that i've got parkinson's and as we work a little further in the book this will become obvious. but i do not -- did i not want to be a writer with parkinson's. i just wanted to be a writer. but i felt i could do that better and could serve another purpose by letting people know there was this avenue, this way of fighting back.
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>> we have been talking with martin cruz smith >> scared as hell... >> as american troops prepare to leave afghanistan get a first hand look at what life is really like under the taliban. >> we're going to be taken to a place, where they're going to make plans for an attack. >> the only thing i know is, that they say they're not going to withdraw. >> then, immediately after, an america tonight special edition for more inside and analysis. >> why did you decide to go... >> it's extremly important for the western audience to know why these people keep on fighting...'s so seldom you get that access to the other side. >> faultlines: on the front lines with the taliban then an america tonight: special edition only on al jazeera america
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jazeera america. >> welcome back to talk to al jazeera. i'm with martin cruz smith. and his wife emily. tell me about the inspiration for the victim in the latest novel, tatiana? >> there was a
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dominant figure in political reportage up to about six years ago, in the form of anna plutkovska. she was known for her commitment to the truth. >> and she was murdered in 2006. >> and murdered in 2006. and still a dominant figure in terms of how much you're willing to commit to of yourself to tell the truth. she told the truth about the children in beslan, she did so at the war in chechnya. and in other instances where she knew that she was putting herself in harm's way. and accepted the fact that she would probably die, pursuing the truth
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. >> your work is full of mortal challenges to your characters. terrible things befall them. they are constantly dealing with tais terrible injury and challenges. and the rest of it in light of what you invented for your novels did it change your perception of that stuff, experiencing it yourself? >> wanted to experience that sometime back i created a hazard for my character, arketyrenko in which he had been shot mountain head and part of the tbult remaine bulletremained in his skull. and then my eye followed to some degree with this operation. i have now got electrodes in my head. and i've got -- so that i have a kind of shadow
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of my bshe -i have become a shadow of my fictional character. >> will you continue writing? >> what else would i do? >> from here what does your prognosis look with parkinson's? >> what i'm hoping for is ten good years. but i know that when i get to those ten years i'm going to want another ten years. i plan to be as selfish as possible. >> and is the deep brain stimulation something that will continue to help you as the technology improves? is that the hope? >> i wouldn't mind a new little implement down the line, they come up with a new line of cars all the time. come with a new line of martin cruz smith. >> one thing we have to keep remembering is the disease is going on and progressing.
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the deep brain doesn't affect the actual disease. >> it just keeps it at bay? >> it does just -- >> it deals with a symptom. >> the effect, it deals with the effects of the disease. >> it's not curing it, just holding it back? >> it makes it better. >> if we could have that -- >> that would be wonderful. >> when i'm fighting to hold onto the present. >> no. >> and it makes me feel better to do something with -- the skill that i have is writing. if i can use that, in some way. and make myself available to other people who have parkinson's. and are afraid to talk about it. and if i can make a connection, then this effort is worthwhile. >> bill, emily expel thank you so much for being with us.
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thanks for