This inaugural Recovery Café features a conversation between Robin and me about an aspect of recovery from schizophrenia. I came up with the idea of the Café—where two people interview each other—after reading Listening is an Act of Love, the StoryCorps book. In Story Booths across America, people could sit and record conversations into a tape recorder, which were then published in a book. I'd like to do this with two peers, a mother and son, a person diagnosed with schizophrenia and someone he disclosed to, you get the picture. So pour yourself a cup of java, pull up to the computer, and listen in on the dialogue.
CB: Would you like a latte or a cappuccino?
RC: A cappuccino.
CB: So I thought we'd inaugurate this series with a talk about anxiety as it relates to recovery. I know you're on an anti-anxiety medication, and I also have bouts.
RC: Sounds great. You start with anxiety and could go off in a hundred directions.
CB: Tell me how you knew you needed an anti-anxiety medication and what brought that on.
RC: Originally way back 52 years ago when I came down with schizophrenia, I had a lot of anxiety. The basis of it is physiological, and like the schizophrenia, there are triggers that will set off bouts of it. I remember my first attacks came when I was put on medication. I've learned over the years myself and talking with others that medications like neuroleptics often increase anxiety. For a long time there wasn't anything to treat it and what they have now—my daughter suffers from it terribly and we've had a very hard time getting any psychiatrists to prescribe her medication for it. I've fired five or six doctors because they wouldn't do it. I don't blame the psychiatrists because the kinds of meds you use to treat anxiety have been abused in the drug community. People get these drugs and take them without a prescription and doctors—at least in New York City especially—have to be careful about prescribing these things.
CB: How does the medication help?
RC: From about 1967 to 1987 I went for a period of time where I didn't really have any trouble. Then it started up in 1987 for reasons I don't know, and I've been taking the meds ever since. I still have anxiety today. If I wasn't taking medications I'd be anxious all the time, and I don't know but I would be because the anxiety was pretty constant. Right now I get anxious at four o'clock. I take the Xanax-XR at four in the afternoon and four in the morning. By four in the afternoon I'm starting to get anxious again. The drug is time-released so it takes a while to kick in. I generally have anxiety from four o'clock until when I go to bed at night. Sometimes it prevents me from sleeping.
CB: The medication does, or the anxiety?
RC: The anxiety.
CB: So you can talk to me about anything, I'll tell you my experiences. Before I do I want to recommend a great Health Central Web site, www.anxietyconnection.com. I went on it this morning. I fell asleep at 9:15 last night and woke up at five in the morning so had nothing to do before work and decided to tootle around it. The site features Jerry Kennard—an expert at SchizophreniaConnection as well, and other experts and also people living with anxiety. One article talked about how the symptoms come on out of the blue, yet there's always a trigger and if you know what the trigger is, you can deflect from the anxiety by not having an automatic response to it. That's something fascinating. I wonder how you experience the anxiety, is it shortness of breath, dizziness, the feeling you're having a heart attack? Aside from the medication, how do you cope.
RC: About a year ago I posted an article on AnxietyConnection. You're right, it comes on fast and the best way to control it is to nip it in the bud, because if you try to ride with it sometimes it will be okay, but most times it gets worse. It's true it's typically triggered by something. I believe it's because I'm not getting enough done on my memoir. I feel like I need to get more done--I get distracted by other important things. If it at once gets fired up, I don't know any way to stop it except with increasing medication--which I don't want to do and doctors don't want you to do because it's easy to get addicted to those drugs. My first psychiatrist 50 years ago told me, "When it happens, go outside and do something, don't let it eat you up, get out of the house, do anything." It's not so easy to do at midnight or if you wake up at three in the morning with it.
CB: How does it affect you?
RC: I often wake up with it in the morning. The effect it has--you mentioned some different things--the way it affects me I'm debilitated. I can't carry on a conversation, I can't sit in a chair for more than three seconds, I can't focus on anything. I've toyed in my memoir with a hundred different ways to describe it and none accurately expresses the kind of anguish it causes. If you talk to someone who's in a bout of anxiety, they describe it like they want to rip their skin off. Your skin has a heightened sensitivity and everything it touches sends a wave up your arm. It's tremendously exhausting. You can't sleep. I've tried to. You flop around and flop around and you never go to sleep and you're up and down.
CB: My anxiety comes up when I'm on the subway or in restaurants. I alluded to it in the blog entry, "Meditation in Movement," about the day at Tillie's. My anxiety doesn't seem to fit the classic pattern of anxiety. I get worried on subways that people think I'm looking at them so I stare out the window or read a book or magazine. On the train invariably I have to do something, like bring my goals binder and re-read the SharePosts I've inserted in it, so that I can benefit from my own advice.
RC: Sounds like your anxiety is more of the schizophrenia, the paranoia. I'm quite certain that people with paranoia have anxiety. I know when I'm paranoid, I'm anxious about it, too. The one thing is a lot of people are critical to others who have it because outsiders haven't experienced it. So they have no idea what it's like. I haven't met anyone else who has a clue unless he's experienced it. My wife has helped me on several occasions when I was in the heights of an anxiety attack that lasted three or four days. She would take me out in the car for a drive and we'd get ice cream. That didn't make it go away, but it got my mind off it for a little while which gave me some rest because this stuff when it hits you, it's all-consuming and uses a tremendous amount of energy to fight it off.
CB: The low level of anxiety I've had ever since I can remember from shortly after I was diagnosed in 1987. In the early 1990s, I told my therapist I would be in a shopping mall and this feeling would overcome me, a free-floating, out-of-the-blue feeling and it would pass, eventually. At least it wasn't a panic attack, which is a good thing, it could've been a panic attack.
RC: I've never had a panic attack, either. They're the extreme end of the anxiety spectrum—our daughter has had panic attacks and as I understand it, you think your heart is stopping, that you're dying. You're totally convinced of it because your heart does race. Now what do you do—I have a good friend—you interviewed him for Schizophrenia Digest—and he has trouble with anxiety, too. He won't go to a movie theater, he doesn't want to be around a crowd of people. The same thing happens with our daughter.
CB: For me it's random. I don't know what the triggers are. I can't predict when it's going to happen. It happens around certain people and not others. I can go to a movie, I can be outside. What I don't like is loud, noisy crowds or people causing a commotion.
RC: That's what happens to [my daughter] Chrissy. She has trouble in those situations. Have you had it often?
CB: For the past at least five years I've had these bouts and I feel like they've intensified. I was on the Stelazine until April 2007 which was last year and I had the anxiety even while on the Stelazine. It's resurfacing now most likely because I plan to buy a co-op by January and plunking down $30k on a down payment is enough to make anyone feel like someone's beating a drum in your stomach.
RC: Yes, big things like that are really hard. I can understand when it hits you on the subway, too. What do you do when it hits you on the train?
CB: I always bring something to read. This is going to sound bizarre—I have Jupiter in Gemini in my natal horoscope chart so I'm a true multi-tasker who's always doing two things at once. If I'm on the subway for a long time I have to read something. I would listen to an IPod but that alone wouldn't solve it.
RC: When I get it at night, I listen to an iPod which helps, yet seldom gets rid of it. Sometimes the anxiety is beneficial, oddly enough. This last time when I've had bouts in the morning and afternoon, if it's not too bad it helps me with my work, and it's an activator kind of thing. But I don't like to use it that way because there's a danger it will take off. For us the anxiety is a self-preservation instinct that has been in animals for millions of years. By and large it's an outdated mechanism that used to serve a purpose but now we get this when there's no reason to be afraid.
CB: That's how it is for me: when you're in the throes of anxiety you're not able to feel differently and act rationally and know that it's going to pass, because you're so caught up in it and it's only when I get home and I'm away from what happened that I can look back and say, "Oh, that was just another bout."
RC: Yes, when you're in the middle of it, it's completely consuming.
CB: Could you clarify what you were saying before about how the anxiety is related to the paranoia?
RC: Well, it gets back to the fight-or-flee instinct. Where you get into schizophrenia, it doesn't matter whether you're in a crowd or at home. When I thought I was possessed by Satan and that particular paranoid thing reared its ugly head, I would get anxious because I was concerned I wouldn't be able to keep him out. As you know, when you have hallucinations and things like that, they're real, you don't realize they're not. So what paranoid delusions can do is throw you in a situation that's comparable to the animal kingdom where you have to fight or flee. The one disadvantage humans have is where do you flee, where do you go? You can't. And if it's in your mind or emotions, you can't flee that, you can't get away from it. That itself feeds the anxiety because you know there's nothing that will give you immediate relief and you had bouts that have lasted longer than you like and you're afraid of that happening again so it aggravates the situation, almost like a self-fulfilling prophecy.
CB: Exactly. You're afraid you're going to get anxious so that triggers it because you're expecting it.
RC: That's right. It's painful. Let me ask—when you leave the house and are going somewhere can you tell when you leave that you might be more susceptible to it?
CB: No. What I don't like is crowds of noisy people, particularly teenagers with attitudes.
RC: Ha, ha, yeah.
CB: They'll be walking down the street and bad-mouthing everybody in creation. My tendency is then to worry what they think of me, even though they're strangers. And I realize this is maybe a kind of symptom of schizophrenia and will be gone at some point in my life. The goal as Dr. Altman said is "total symptom relief." Does that mean not ever having a feeling or a mood or paranoia, or that I'll be better able to control it when it does come on. For that I'd like to see how it goes. I see him a week from Thursday and I'll ask him to clarify this.
RC: My doctor used to say when I had an anxiety attack—it's a cognitive behavioral thing used now—when I felt anxious to keep doing it and then it wouldn't scare me anymore.
CB: That's true. It's not the be-all and end-all. It's a quirk. I'm not sure if that's the right word.
RC: You mean the anxiety itself? It is a quirk. Some people get it, some people don't. It used to be on a continuum: depression, bipolar, schizoaffective, schizophrenia, and was in the order of getting worse as you go along. But you and I know a lot of people with depression who have hallucinations, and everyone with schizophrenia has depression, so I think of it as a hollow sphere and wherever you're located inside that sphere it determines the kind of symptoms you get. Treating it is different for every person. In the end, the [anti-anxiety] medications could be the answer.
CB: That's what I'm torn about. I don't have the heart-racing, chest-thumping symptoms. I'm resistant to taking medication for it, unless possibly I take BusPar [an anxiolytic that is not addictive].
RC: It might help. I take Xanax, Chrissy takes Klonopin. You've heard me talk about her before—she's kind, patient, and compassionate, understanding and a good listener, all of that—yet boy, she is tough as nails. She deals with this stuff every day. I couldn't do it.
RC: Like you said it takes different forms with each of us: you get it in the subway, and I get it out of the blue.
CB: I see the Café is open for another half hour. Would you like a refill on your coffee?
RC: Sure, I would.
CB: I'll talk to you off-record now, okay?
RC: Fine. Then we'll go down the street a little way to that jazz place.
CB: Sounds good.
Note: Before taking any medication, talk with your doctor about the benefits and side effects. Some of the drugs talked about in this article are addictive. We aren't suggesting you take a particular drug. The Recovery Cafe series is intended to be a free-form exploration between two people about what it's like to live with schizophrenia, and how it affects them. Seek the advice of a professional for your own treatment.
Published On: August 05, 2008