THE SHADOW'S NAME

'A Story Of Schizophrenia, Service & Hope'
Exclusive Interview with Marge Wakefield
Featured in 'Innerviews'
Hosted by Allié McGuire

​Marge Wakefield grew up in Lake Linden, Michigan, a small town in the Upper Peninsula, where she came to know herself as a “Yooper” and, from a very young age, came to know something else she called “the shadow.” At nineteen, while studying piano in Philadelphia, she was hospitalized for the first time and saw the word “schizophrenia” written on her chart. What might have frightened someone else brought Marge a sense of hope, because for the first time, what she had carried had a name, and if it had a name, she believed something could be done.

ALLIÉ: Marge, there is something so powerful in the way you describe your diagnosis, not as the end of your life, but as the beginning of your next. I'd love to start there with the shadow you felt as a child and the moment you finally had a name for it. You've shared that, at the age of seven, you knew something was wrong and called what you felt "the shadow." Can you take us back to that time and describe what the shadow felt like as a child?

MARGE: Yes. I remember we used to go as a family every summer to South Dakota, where my grandparents lived. They had a big city park with a swimming pool and a river and all sorts of events, firecrackers going off, and all the kids were running around playing with each other and having a great time. I remember, and it was either seven or nine, we were there both summers, but I think I was seven, I didn't want to play with the other kids.

​I didn't want to run around. I didn't want to shoot off fireworks. Even my grandmother knew that something was wrong. You know how little girls do tea parties? She tried to set me up with tea parties with other neighborhood girls, and I just wasn't into it. What I was into was reading and playing the piano, neither of which made me a lot of friends. But even at that age, I remember that Fourth of July picnic in the park when I was seven. I just had an epiphany. I knew something was wrong.

Because I didn't have a name for it, I just named it. I called it "the shadow." And the shadow stayed with me all the way through grade school. I was just that quiet loner kid who walked down the hallway and didn't have friends. I was depressed, but I didn't know what that word was either. I came from an abusive family situation. There was a lot of abuse, physical, sexual, emotional, everything. It wasn't a happy home, and I was not a happy child. So I just stayed in my room. I was good in school. I made good grades because I liked to read. But the shadow was always there.

I was a piano prodigy, and my mom and my piano teacher used to take me around to different towns to women's meetings where I would play the piano. But I wasn't happy doing that. It was a forced performance by my mother. So I just went through school like that.

One of the trips I took with my mom and my piano teacher was to Lower Michigan, about 300 miles south of where I lived. I played the piano there and did okay. At the end of the day, they took out a recording and played a video of a camp in Lower Michigan for young musicians, artists, and writers. It was called Interlochen. I watched it and thought, "This is it. This is my escape.”

So one day at lunchtime at school, I went home. I knew nobody would be there because my parents both worked. I took out the reel-to-reel tape recorder and made a tape of my piano playing. I sent it off to Interlochen, Michigan, and about a month later I got a letter saying I had a full scholarship to the camp and to the academy. The academy was live-in, so that was it. I was like a bird out of a cage. I went to that school for two years.

ALLIÉ: Did that make you happy?

MARGE: I was happier than I'd ever been, but the shadow was still there. I couldn't get away from the shadow. I used to see things other people didn't see. I was hallucinating. I just wasn't right.

After Interlochen ended and I graduated from high school, my piano teacher at the school moved to London to teach piano. So I lost my father figure in my life. Another student and I said, "Well, why don't we go to London and study with Mr. Vajany?" So we did. We took a ship from Montreal, where her parents lived. I mean, two 17-year-olds, maybe I was 16, but I think I was 17 at the time. We went with the blessing of her parents. My parents barely knew what I was doing. My mother came briefly to Montreal and finally said, "Well, I guess you can do it.”

We got to London and studied piano with him, but we hadn't planned ahead. We arrived in September. It was cold. We were freezing. We didn't have any money. We didn't have any food except for what her parents sent us money for. I just started decompensating and hallucinating more and more as I rode around the city on the red buses.

One day I came home and I couldn't see anything in the room. I was having an acute psychotic episode. I couldn't see a table or a chair. Nothing. It was just this wavy yellow energy. I told my friend who had come there with me, and she called the teacher. He happened to be home on a leave of absence. They came and talked to me and realized I wasn't functioning right, so they sent me back on a plane to the United States.

I got to New York City and somehow made my way to a friend's house in Philadelphia. I asked if I could stay the night. I had no plans. My life was totally unstructured. That night, I hallucinated. I heard voices coming from the ceiling. I heard my radio playing in the room, and the next morning I realized the radio wasn't even plugged in, and it wasn't a battery radio. I was hallucinating symphonies and music and choruses.

In the morning, I told my friend what was happening. He took me down to Philadelphia City Hospital. The doctors were all gathered around me in a circle, asking me, "What is your name? How old are you? Where are you?" You know, questions of orientation. ​I didn't even know who I was, much less my name or my age. I didn't know anything. So I was hospitalized. I think it was on the eighth floor, I'm not sure. But I was so confused. I was just a lost soul. I had no grounding, no family support. I was just a lost soul.

ALLIÉ: A lost soul. I can't imagine, because for so long the only title, the only name you had for what was going on was "the shadow," and now you were in this state. So let's really dig in here. When you were hospitalized in Philadelphia and saw your chart with your name and the word "schizophrenia," I think many people might imagine that moment as terrifying. But for you, perhaps, it was something of a relief. Can you take us to that moment, Marge?

MARGE: I was up early and pacing the hallway to get rid of the anxiety I felt. I walked past the nurses' station. It had a slanted glass wall, and behind it was a desk. I saw a chart on the desk, and it had my name on it. I thought, “Hmm."

So I walked closer, and the chart said my name, Marjorie, with a different last name at that time, and it said "schizophrenia." And I was happy. I just thought, if it has a name, then something can be done about it. I was happy.

I didn't know what schizophrenia was. Back then, in the late '60s, it wasn't like hospitals today. Nobody asked me, "Do you want to take medicine?" Nobody asked me anything. My doctor, Dr. Groff, who I'm sure is no longer with us, just gave me the medicine. At that time, all there was was Thorazine. I remember it was either 300 or 600 milligrams four times a day. I hated it.

But I knew I needed to take it. Even at that point, I didn't trust myself, but I trusted the doctors. So I took it. It didn't make me feel very good. It made me feel like I was walking under 10 feet of water. It was a funny feeling. But it did help. It started to help.

Another thing that was different then from hospitals now is they kept me for a total of three months. They don't have long stays like that anymore. But I began to realize there was a routine. There were people in charge who knew what they were doing, or seemed to, and I began to feel like there was structure. I'd never felt that before because my family was very chaotic. I began to feel safe, like nobody was going to touch me without my permission. I'd grown up with a different set of rules.

So that was the beginning of my recovery, identifying it, having a word for it. Giving it a name.

ALLIÉ: Let's talk more about the fact that, as you pointed out, your childhood was difficult, to say that lightly, with both of your parents living with mental illness in different ways. How did growing up in that environment shape the way you understood yourself, your family, and mental health in general?

MARGE: When I was four years old, I remember sitting on the floor of my bedroom, cross-legged on the carpet, going, "Is it him? Is it her? Is it him? Is it her?" I knew somebody was wrong in this equation of a family. But the good thing about me is I had enough strength that I never asked myself, "Is it me?" I knew it wasn't me. It was outside of me. So I had some kind of sense of being a person at that point. I had some kind of identity.

About 40 years later, I realized it was both of them. It wasn't me, thank God, but it was both of them. It wasn't one or the other.

I had a lot of hospitalizations. I went from that hospital to the Philadelphia Psychiatric Center, which was out in the countryside. It was really pretty, really nice, and I had good treatment. Again, I was there for months, not just three days.

I also saw a lot of things I didn't like. They were giving lobotomies then and shock treatments that weren't done humanely. But I just kept taking the medicine. I trusted my doctor. He was like a grandfather. So I began to collect a semblance of family, and I did that all my life.

My family of birth had no cohesiveness. I had three siblings. We didn't bond at all because there was no bonding at the top. We hadn't learned to bond. ​My family kind of exploded. I left home around 15. I know I turned 16 that year. I was a year ahead in school. But I was on my own as far as growing up. I wasn't even allowed to pick out my own clothes. I was in a very strict, regimented environment, and if I disobeyed, it meant physical punishment. At night, there was sexual abuse. It was just a horrible, horrible experience.

But I don't know, I just never gave in. I was stubborn. That's what did it. I was a really stubborn little kid, and I refused to give in to the craziness around me. Somehow, inside myself, somewhere, I knew this was not right.

So I got into a cult at that point, looking for a family. I'm not going to mention the name of the cult. It was a religious cult, sort of psychological and religious, and I spent 12 years in it. As destructive as it was, it was like a family. So I had the knowledge of what it felt like to be in a place where there was structure, where there was a hierarchy, where there were parents and children. I don't say anything good about the cult because it was very vicious. But I got something from that structure.

Through a series of events, I ended up in Tampa, Florida. I had a psychiatrist there who was very kind. I think I was working some odd jobs then, and she told me, "What you really should do is go back to school and learn a trade." She said, "The best thing you can do is become a social worker." She knew I liked to travel around, and she said social workers can go anywhere and work.

I didn't have my undergraduate degree, but there was a school in St. Petersburg called Eckerd College that let you do the four-year degree on your own. You'd pick up your books and assignments once a month, take them home, do the work, submit it, and I got a four-year degree.

The funny thing was, they evaluated me to see what credits I might already have satisfied. They gave me four credits for Religion 101 for being in a cult. It was a religious group to them.
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​ALLIÉ: Take what you can get, yes?

MARGE: Whatever. And they gave me four credits for Psychology 101. So I had instant credits. I got through that school and got my BA in 1984. It tells you how old I am.

Then the same psychiatrist said, "Well, why don't you take the GRE and see if you can get a scholarship?" So I took the GRE and got a 1300, which was a really high score then, and I got a full scholarship to Florida State University. I was in Florida all this time because I had joined a class action suit in Florida against the cult.

I went back to school at Florida State and ended up with an MSW. It wasn't easy at any point. I still had hallucinations, and every time I had a vacation from school, like summer break or Christmas or whatever the holiday was, I was back in the hospital. I called them my tune-ups.

ALLIÉ: How hard was that?

MARGE: It was tough… but I just did it. I was so happy to have a credential that wasn't any part of the cult. It just kept me going. I ended up being a hospice social worker, taking care of people.

ALLIÉ: That had to take a lot.

MARGE: I loved it. I just felt like, I can help somebody with something.

But going back to where we started, yes, seeing my name and the word "schizophrenia" together gave me a framework and an idea about recovery. I had an excellent male psychiatrist in the hospital. It's sort of funny to me now how it was done because nobody asked me anything. They just brought the pills to me in a glass of water and said, "Take this.”

​ALLIÉ: That's wild to me. And if you don't mind, I'd like to talk for a minute about the fact that there is still so much stigma around schizophrenia, even among people who speak openly about mental health. What do you wish more people understood about schizophrenia and the people who live with it?

MARGE: First of all, it's not the person's fault. I believe I had a genetic predisposition to having a mental illness because my father was clinically depressed. He had a very serious depression, always. And my mother had a psychotic disorder. So some of that was genetic.

But it wasn't my fault. I mean, the amazing thing is that I survived it. One of the reasons I'm so passionate about families right now is that I didn't have any family support. I paid for my own therapy sessions when I started out, when I realized what was going on, that I needed therapy and I needed to take medicine.

I didn't have family support. That's why now I'm so interested in what this organization is doing, because families need help as well as the adult children or children. And there are so few resources. There aren't enough resources for the families or for the people with the diagnosis, whom I call peers.

​ALLIÉ: So the National Shattering Silence Coalition, the organization you're speaking of, is doing this work because, to your point, there aren't enough resources, and mental health isn't being addressed in the way that it needs to be or to the degree that it needs to be. The fact that you can take your lived experience and share your story to help people know they're not alone, I love what you're doing.

What your story shows is that there is a way to live with it. There's a way to move through it. It's not easy, but it's possible. And I think having that hope matters. So here's the last question I had for you today, Marge. For someone listening who may be living with their own version of "the shadow," what do you want them to know?

MARGE: I want them to know that, number one, it is not your fault. It's not your fault. It's like a card game. You drew a bad card. So did I.

But number two is for the family. Please realize that you are so important to this adult child or younger child who has this illness, and don't give up on the child. It may take a long time, but there is some help available. We have to make more help available. We have to talk about our experiences. Those of us who have a little recovery, or some recovery, have to talk about it because what I went through, doing it all on my own, is not the way it should be. It was a horrifying journey.

It's taken my whole life to have a nice apartment. Right now it's kind of messy because we're having a community sale this weekend. But just know that it's not your fault, that there is hope, and that you do need to take the medications. Sometimes you have to experiment until you find the right one, or the right combination. That can be frustrating. But there is recovery.
I've written one book called I Survived, and I'm writing another book now, which is a rewrite of that book. In the back, I'm putting my contact information because I want people who read my book to know they can call me and I will encourage them.

Importantly, suicide is not the answer. You can have a life that is worthwhile. You can be worthwhile. You are worthwhile.

So don't give up… Just don't ever give up. ∎

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​Learn more about serious mental illness and how you can help change the narrative: www.nationalshatteringsilencecoalition.org