Pamela Spiro Wagner is an award-winning poet and co-author, with her sister, Carolyn Spiro, M.D. of Divided Minds: Twin Sisters and Their Journey through Schizophrenia, out now in paperback. She's the second person in my "100 Individuals with Schizophrenia" interview forum.
CB: First of all, I want to congratulate you on being a Best of 2007 award winner for your blog at www.schizophrenia.com.
PSW: Thank you. And congratulations to you.
CB: Thanks. I'd like to start by asking what your diagnosis is and when you received it?
PSW: My diagnosis is paranoid schizophrenia, and was also schizoaffective. I don't think I'm schizoaffective. It was only when I was about 30 that the final diagnosis was made, or at least told to me. I was on anti-psychotics for years before then. In the 1980s or late 70s people didn't believe in telling you your diagnosis.
CB: What kinds of symptoms do you have?
PSW: Though I haven't heard any of the bad voices since May, the little people are still here. They drive me bananas, and do so every day. They argue, they bicker; they talk about all sorts of things. When I say they drive me bananas, I mean it in a colloquial fashion, I don't mean psychotic or anything. Recently, someone named Julian told me to clean off the soap scum on top of the dishwashing liquid bottle, telling me it was against the law that had just been passed. So I began scrubbing at the bottle until it was just about pristine when it occurred to me he was one of the little people. He wasn't real. So I rinsed it but stopped short of drying it, and put it back in the rack.
CB: What can you tell someone living with voices or hallucinations about how to best manage them?
PSW: I'm not very good at it. I concealed them for years, but acted on what they told me to do even though I concealed them from others. What helped at their worst were counter-irritants, like sound of some sort that didn't frighten me but drowned them out otherwise. The television, the radio would not work because they gave me messages. Oddly enough, I could listen to static.
CB: How do you cope now?
PSW: Being with people helps, having a conversation and trying to pay attention to the other person rather than the voices. It's work, but if you decide not to pay attention to what's going on internally, and work to focus on what's going on around you, you'll come out of it. The more you pay attention to other people, and the better friend you become, the better friends you make. All are steps on the way to recovery.
CB: How did you get involved with schizophrenia.com?
PSW: I was an early Internet user and sensed its potential when there were only two ISPs - AOL and CompuServe. I figured if there were a general website on the topic, it would have to be called schizophrenia.com. Lo and behold when I typed that in, I got Brian Chico's site. He gave me their first blog.
CB: You've been blogging since 2004. There, you talk about your friendships. Could you tell us about the importance of peer support in your recovery?
PSW: Well, it's incredibly important but I don't like the term peer support-it sounds structured, whereas friendship is something you want and need and seek, and everybody does, not just people with schizophrenia. All I know is that I have Joe and Lynn and Josephine and Karen, but they didn't do anything different when I started heading towards recovery, only what they've always done. They were true friends in every way that mattered. I was lucky to have them, and now I'm able to appreciate that, which I hadn't done before.
CB: I'm struck by your book and blog because you have insight into your condition. A lot of people lack that. I wondered what you could tell someone who's resistant to treatment or isn't aware something's going on.
PSW: Oh, it's funny because for so long I lived a double life giving lip service to the words "having schizophrenia" and not really believing it. Now I take the medication because it's kept me out of the hospital. The drugs don't cause unbearable side effects, and one has a good side effect. So why not take it?
CB: Okay. In your book, like a lot of people you went for 10 years without treatment and a diagnosis. Were you ever afraid of the stigma surrounding the illness?
PSW: It turned out to be more than 20 years, as I first got sick in the sixth grade. From 1980 on, I was in a circle of people at a day hospital and we hung out together at Dunkin Donuts or Bagels East, and none of us cared. We were all too sick to care. In those days, nobody expected us to work or that we could work, so there was no stigma.
CB: Tell us about Divided Minds. You obviously felt the need to publish it. What's the number one thing you wanted to convey about what it's like to have schizophrenia?
PSW: For people without the schizophrenia or not closely connected to somebody with it, I want them to know it's a horrific illness that literally consumes the self. For all their irritation with a mumbling shopping cart lady on the street, they don't know she's in a hell they can't imagine and needs their mercy, not their rancor. As do all of us. For people with the illness, I'd like to say it's possible to come back. I was in the deepest pit but I found my way back.
CB: How did you do that?
PSW: With a doctor willing to tinker with the meds until the right combination was found. And some real fighting against the symptoms, which I couldn't do without the pills. I take eight different drugs in all sorts of amounts. Some I take the max, others below the minimum. Most people are on one, I'm on three anti-psychotics at different doses. It works, and a lot of doctors aren't willing to take the time to tinker. They just want to put a person on one med or two, and if that doesn't work, tough. My psychiatrist was a miracle find.
CB: Dr. O.
PSW: Yes. I was hospitalized so many times fighting with her not to take the pills, and she stuck with me.
CB: So at some point you didn't want to take the pills. Did you feel you weren't sick?
PSW: I didn't like the side effects.
CB: Tell us about your hobbies: writing, crafting, jewelry making. Why are they important to you?
PSW: The word hobby almost cheapens the importance of them because they give meaning to my life. I write to live and I live to write.
CB: Wow. Go on.
PSW: Working by hand is critical to me, and that's partly why I have to write in the notebook by hand, because moving a pen is handiwork. It crafts words-and I love that because I get to use my hands and write. Art, writing, jewelry making and sculpture are food for my soul.
CB: On that note, I'd like to leave everyone with one of your beautiful poems.
Pops and crackling, a radio tuning itself,
the squeal and echo of feedback
before the broadcast of secrets, thoughts no one should know.
In the wall today, a colony of immigrant
Japanese have taken up residence.
They speak an unknown dialect I alone understand.
One voice commands the household, tells me
the right and wrong way to do everything.
My local pastor finds transcripts of his advice "spiritually moving."
An enthusiastic friend tells me I am channeling, undoubtedly
an ancient spirit I met in a former life. Brother
Luke, I say, you talk too much. Go away.
Some days there is only repeated music,
singing that has gone to my head
and broken there, a record on a spindle turning, returning.
Pamela Spiro Wagner, 2007
Visit her blog at: http://www.schizophrenia.com/pam
Published On: September 04, 2007