For 18 years, novelist Martin Cruz Smith hid a secret. A disease had attacked his brain, and it was slowly taking away his ability to think, to move and to write. With his wife, Emily Arnold Smith, who helped him put words to paper, and technology known as deep brain stimulation, the best-selling author of “Gorky Park” now relies on a sort of pacemaker for his brain. Al Jazeera America’s Jacob Ward spoke to Martin Cruz Smith and Emily Arnold Smith.
Jacob Ward: You were diagnosed with Parkinson’s in 1995 and have kept it private all this time. Why is that?
Martin Cruz Smith: Just the sense that there was any weakness at all in the public perception of who I was. I didn’t like being weak the way American men don’t like being weak.
Martin Cruz Smith
What was life like in 1995 otherwise for you?
Martin Cruz Smith: I was a superb athlete.
Martin Cruz Smith: I had what one would say was about as good a life as one could have, with this one hiccup, which was I was starting to shake.
And that was the first sense you had of it? Is that how you found out?
Martin Cruz Smith: Well, the first sense I had was, I was going to Thanksgiving dinner at a friend’s house, and as I was headed down there with another friend — also a doctor — he said, “Why aren’t you swinging your arm? Why aren’t you swinging your right arm?” And I said, “I didn’t notice that I wasn’t.” And he said, “Yeah. Do this. Move your arm this way, move your arm that way. I’m sorry to tell you, but I think you better see your doctor, because I think you may have Parkinson’s.” So that was a tough Thanksgiving dinner. You know, once you are aware of something like that, you’re super-aware of it, and that progresses until the point of which you really are shaking. And then that becomes your life.
Em, what were the first indications that you noticed?
Emily Arnold Smith: The stovepipe arm was noticeable, especially if you’re walking behind him.
How did it affect your day-to-day life?
Martin Cruz Smith: Well, it runs your day-to-day life. Now, for me, the big thing was the tremor ’cause I was constantly fighting the tremor. I was constantly digging my hand in my pocket. I was constantly holding it — you know, the poses. There are trademarks of — anything that sort of stills your arm — that holds it down.
Emily Arnold Smith: And then the typing.
Martin Cruz Smith: The typing was ridiculous. And then the typing — not only was I typing badly, but I was hallucinating. And not scary hallucinations, entertaining hallucinations. Like, I would imagine that little black tornadoes were coming out of the keyboard.
I think a lot of people would be frightened by that.
Martin Cruz Smith: It was more entertaining.
Emily Arnold Smith: It was benign.
Martin Cruz Smith: Or I’d have a cat lying across my lap as I was working.
That didn’t exist.
Martin Cruz Smith: Yeah, I didn’t tell a lot of people. That sort of shakes their foundation of who I am.
Emily Arnold Smith: The nightmares bothered you.
Martin Cruz Smith: Yeah, I would leap out of bed ready to fight. That was scary because I was pummeling Em or I was on the floor wrestling with something — some phantom.
He would literally be rolling around, jumping out of bed.
Emily Arnold Smith: Yeah, or he’d think I was a tiger, and he was trying to strangle me.
Emily Arnold Smith: It was scary. And he threw himself out of bed. That was actually kind of the first signs.
Martin Cruz Smith: But at that point, you say, “Oh, it was a bad dream. It was a nightmare.”
Emily Arnold Smith: And we had all sorts of reasons — you know, he was too much into his book.
So this was even before your official diagnosis you were beginning to leap out of bed, have this disruptive sleep.
Martin Cruz Smith: Right.
Emily Arnold Smith
What are you able to do or not able to do?
Martin Cruz Smith: I can do anything.
Is that right?
Martin Cruz Smith: And the main thing I can do is this [holds his arm up] without shaking.
And why is that?
Martin Cruz Smith: Because I have the electrodes that run into my brain. That’s why it’s called deep brain stimulation.
So you’ve had a surgical procedure in which they implanted this device?
Martin Cruz Smith: Yes. That’s right.
How did you learn about the procedure? How did you decide to do it?
Martin Cruz Smith: Well, I decided to do it. My body decided to do it. I had heard a little bit about it. Of course, I was repelled by it. The chance to — you know, sort of a Frankenstein’s monster kind of aspect anytime you’re doing surgery deep in the brain that’s going change your ability to function. And so I recoiled in the beginning, but I was not responding to medication.
Tell me the difference between who I’m seeing sitting in front of me right now and who you were a year ago. Because right now, looking at you, I’m not sure that I’d be able to detect the —
Martin Cruz Smith: Well, you would detect then because I would be fighting that, and that is more than just the tremor that you’re fighting. Because it’s a tremor, you’re all the time conscious of it, trying to control it, and it wears you down, you know? So I can move, I can do things. I’m not 100 percent of who I was. I mean, I’m 71, though, you know?
The deep brain stimulation itself — tell me about that procedure.
Martin Cruz Smith: I was in my 60s by that point. I’m 71 now. There’s this window, you know, that sort of cut off around 70 when you can have this kind of operation with a good chance of success. So the way not to fight it is to keep it to yourself, and I saw people at the neurologist office who had had it and sort of like were freed as if they had been let out of jail. I wanted that.
So, tell me about what’s in your head right now, how it’s working. How is it functioning as we speak?
Martin Cruz Smith: I’ve got sort of like a pacemaker here, a neurological pacemaker here, and I’ve got wires that go over my head and through the skull and 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’s where my weak spot is. I always was bad at math. I always was bad at science.
And here you are depending on both.
Martin Cruz Smith: Here I am, you know, talking about something, an operation that is kind of mysterious, actually. Maybe I’m putting myself down too hard here — I always love that — because, in a way, 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, you know, in 50 years, I can well imagine this not being a situation at all.
Because the treatment is so general, the electrical signals being sent to the brain are just a blank current.
Martin Cruz Smith: Well, there are different targets in the brain to aim for. One, you aim for a person depending on his personality and his skills — word skills or short-term memory recall. So one person will 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.
Emily Arnold Smith: I don’t think that the nerves actually produce dopamine. I think what they do is regulate the nerves’ reaction — the nerves so that the shaking will stop.
What are you able to do now that you’ve had deep brain stimulation that you couldn’t do a year ago?
Martin Cruz Smith: I couldn’t do this. (Holds his hands steady.)
Your hands would have shaken uncontrollably?
Martin Cruz Smith: My hands would have shaken. The hands would give me away. Now they’re mine again.
And it happened instantaneously. You woke up and you could do that?
Martin Cruz Smith: No. They turned the juice on after a couple of weeks. After the implant, they wait two weeks for that to heal. Then they turn the juice on …
Describe that moment when they turn the juice on.
Martin Cruz Smith: The moment is, I lifted my hands, and I was shaking. They turn the juice on, and —
Flipped a switch, and suddenly your hands are still.
Martin Cruz Smith: Exactly.
That must have been a wonderful moment.
Martin Cruz Smith: It was stupendous.
Emily Arnold Smith: And then they had him walk down the hall, and he’s walking straight. It was a wonderful moment.
Martin Cruz Smith
So you were on a cocktail of medications?
Martin Cruz Smith: Yes
And were they effective at first?
Martin Cruz Smith: I don’t think they were ever particularly effective, and I certainly would have preferred to have been just taking pills instead of having an operation on my brain. Another effect that this has had, it has had an effect on short-term memory. So, occasionally I will blank out when you’ve asked a question — you’re waiting for me to come up with the answer because I’m sorting through empty file cards. There were words on all those file cards, on those index cards, but now I can’t find the word for “index” or “file” or “card.”
That must be maddening.
Martin Cruz Smith: It is very maddening.
Emily Arnold Smith: Especially if you’re writing.
Martin Cruz Smith: It means, of course, that I’m not coming up with the first word, the usual word you use for that or the usual phrase you use for that. I’ll have to create another phrase, which no one has ever used before.
No wonder — the fatigue. You had all these tools available to you as a writer that suddenly disappear. You have to relearn the language in a way.
Martin Cruz Smith: Yeah, or remake it. Sometimes when you remake it, it’s kind of interesting. But more often than that, you’re struck dumb, literally dumb.
When did Parkinson’s first affect your ability to write?
Martin Cruz Smith: Well, to a degree, for 10 years, probably. But I’ve always been a spectacularly bad typist.
That’s too bad.
Martin Cruz Smith: And so Parkinson’s wasn’t that noticeable for a while. But there came a time when I was just banging my head against the wall in trying to bang the right keys, and that was the point which I did not suggest it, but Em said that she would be willing to take dictation for the first time, although Em has always been my first editor and my best editor.
How did you summon the patience and the —
Emily Arnold Smith: Well, to begin with, I looked out the window a lot between sentences, and then I devised a genius system of putting my New Yorker (magazines) 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 a scribe of someone who is trying to relearn the process, there would be a terrible moment of watching and waiting for the sentence. That would then make you self-conscious. I can see the situation imploding if it were handled the wrong way.
Martin Cruz Smith: Oh, it’s full of the possibilities of confusion and unhappiness — a mutual reluctance.
Emily Arnold Smith: I was amazed he could do it, and he kind of did it right off the bat, because the ideas had always gone directly to the page without even 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 writing was just the same, and whole, beautiful sentences.
Did that teach you something about the way that you write?
Martin Cruz Smith: It taught me about something about the ability to just put one’s own life aside and then engage entirely in somebody else’s work. I would not recommend it to most couples. It will not be couples’ therapy.
Martin Cruz Smith
Tell me about the decision to then tell the world.
Martin Cruz Smith: What struck me was that — the degree of defeat, sense of defeat in people with Parkinson’s. You see people die of complications of Parkinson’s. What complications? I want to know, you know, in spite of the fact that I might be foretelling my own obituary. But like right now, you know, I’m just skipping a beat right there. It’s a little bit like a record needle skipping a beat. So I have to go back to reconfigure what your question was. And that happens to us when we’re working all the time. Because I have to give it to Em, then I have to remember it, what I said, 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.
How big is the blank spot that arises when you forget that moment? Do you forget everything about what you’re doing or who you’re with, or is it — do you have a sense of “I’m in this room, and I know these people, but I can’t remember what we’ve talked about?”
Emily Arnold Smith: The word.
Martin Cruz Smith: There it is. It’s the key. I know the door is there and I know there’s people on the other side of this key — this door, this key.
Right. But which one of these keys is it?
Martin Cruz Smith: Yes. Right. And so I know that — I saw other people with the same reaction, and there was a sort of a hopelessness that I felt about the situation, especially when the meds weren’t working, and it struck me that other people had the same thing, and I was certainly not going to talk about it until I saw that there was a chance of saying something positive and worthwhile. People did not know about deep brain stimulation.
Emily Arnold Smith: But explain why you suddenly were able to tell the publisher.
Martin Cruz Smith: Well, I didn’t want to tell the publisher because I didn’t want a reaction of him that was mixed at all. I wanted to — operating purely as a writer submitting a manuscript to an editor. You know, I didn’t need, “Oh, by the way, I would have given you another description of this if I could remember the words.” I just wanted simply a pure transmission of the story.
So you didn’t tell him until you had submitted the manuscript.
Martin Cruz Smith: Until he had finished the manuscript — until he came back and said all the things a writer hopes his editor is going to say. I said, “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 did 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 can serve another purpose by letting people know that there was this avenue, this way of fighting back.
And will you keep writing?
Martin Cruz Smith: What else would I do, you know?
This interview has been condensed and edited.