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Feature: The 80 percent solution
David Roche gives his Church of 80 Percent Sincerity its sacred text...

by Joy Lanzendorfer

"I am facially disfigured," writes David Roche. "Woven through the left side of my face, head and neck, extending into my soft palate and airway, is a benign congenital tumor consisting of my own engorged and tangled veins and capillaries. My left cheek is tuberous and misshapen. My dark bluish-purple tongue is twice the normal size."

So begins David Roche's book, The Church of 80% Sincerity, which is being released this month by Penguin Group. Roche, who lives in Mill Valley, now makes a living off of his face. He tours around the world giving motivational speeches about what it's like to be facially disfigured.

However, for most of his life, Roche didn't talk about his face. Although he felt encouraged and loved by his large Catholic family, no one ever talked about his deformity. In fact, it wasn't until Roche was 13 that he had his first major acknowledgment—and rejection—of his impairment. At the time, Roche wanted to become a priest when he grew up. When his father brought him to church to see about entering the seminary, the priests told him that he was too ugly. No one, they said, would respect him as a priest because of his appearance.

This is one of the candid stories Roche tells in The Church of 80% Sincerity. In this part self-help book, part memoir, Roche reveals his life story through the development of his "church"—a spiritual philosophy that emerged while Roche came to terms with his disfigurement. Through meditation on concepts like grace, faith and prayer, Roche tells stories like the first time he kissed a girl, the man who spit on him in the street, being examined by a room full of doctors and falling in love with his wife, Marlena Blavin. Along the way, he lets readers in on what it's like to live with facial disfigurement—and the spiritual searching that has gone along with it.

I met with David Roche over chai lattes in downtown Mill Valley to talk about his book. Soft-spoken, with a gentle sense of humor, he was as open about his beliefs as he is about his face. We talked about the emotional and spiritual issues he raised in his book.

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I assumed the Church of 80 Percent Sincerity was tongue in cheek, but it sounds like it really does represent your spiritual beliefs. How serious is the church?

You know, I don't feel like I have to answer that. No, I'm teasing. The title of the book is 80 percent sincerity, and that's what you get, you know—you can be 80 percent sincere 100 percent of the time or you can be 100 percent sincere 80 percent of the time. Does it represent my spirituality? I think it does in the sense that I had to come to accept myself as disfigured and flawed and imperfect. So it took a sincere spiritual effort to come to the place in my life that it was OK. That I was OK.

Are there other members of the church?

People often come up to me at the show and ask when services are. And then I have to disappoint them and say that I'm the only member. But when I first started the show in 1996, I sold spiritual favors. So I had a sin forgiven for $10, for $25 you could be a saint and for $100 they were guaranteed to go to either heaven or nirvana.

How did people react to that?

Enthusiastically. People said, "You know, I don't believe in sin, but here's $10 anyway." So we made enough money to put the show up in San Francisco.

You are friends with writer Anne Lamott, who wrote the foreword of the book. How did she become involved?

I have a letter that Anne wrote me about five or six years ago where she says, basically, "David, you have to write a book." And she started questioning me, "What is it in you that would keep you from doing that? Do you think you don't deserve it, or something like that?" And so I let that work on me. I started writing. Then the evolution of the book is like this: I was asked to do an event for Kosovo refugees at the San Geronimo Cultural Center about six years ago. It turns out Annie was there and she reviewed the show and put it in [online magazine] Salon and then put it in Plan B, one of her books. An editor at Penguin, Meg Leder, saw Annie reading at Barnes & Noble in Manhattan about me. People loved it and Meg thought, "Huh." She checked my Web site and my show and she asked if I would want to write a book. I said, yes I do. Annie said she would write the foreword, and it went from there.

Since you didn't have much writing experience, did you find it intimidating to suddenly be writing a book?

Not enough to keep me from trying it. [Laughs] I thought, whatever I have to do, I'll do it. There's something sitting in your lap, you know, what are you going to do say, "Oh, I can't do it." No way.

I also want to point out that this book is as much an editorial achievement as a writing achievement. I turned in 70,000 words—the book is 26,000. I just kept going, "Oh this might be good, this might be good, this might be good," and then Meg would take the writing and say, "OK, let's do this" or, "Could you give me a chapter on this?" She carved out this book.

When you were a baby, doctors used radiation to slow the growth of the tumors. What did that do to your face?

Well, I don't think I really know what all it did. Radiation was new. It was not like I was a guinea pig, but back then they thought that radiation did all kinds of stuff, so they used apparently a lot more than they needed to. There are still some tiny gold pellets of radon gas—no longer radioactive—that they implanted inside the side of my head. My understanding is that the radiation caused the lower part of my face to stop growing. So my jaw is very thin and eroded and I've lost almost all of my teeth. The radiation changed the ecology of my mouth. It gave me a cataract on my left eye and they told me that this [points toward a patch of skin by his eye] is a radiation burn. I'm at risk for skin cancer and thyroid disease. I've had a couple skin cancers, but really nothing much. I'm 64, you know, I'm at the age where people who didn't protect themselves from the sun get skin cancer all the time. So that actually hasn't been that bad.

Do you think you would have been better off without the radiation?

I don't know, that's the thing. The idea at the time was that radiation would kill tumors. They would never use radiation now. I'm going to speak at the International Society for the Study of Vascular Anomaly in Boston in June. I'm casting my head as the history of vascular anomaly and the treatment of it in the latter half of the 20th century. Sometimes I think that after I die, they should auction off my head on eBay and get some money for it.

When you were growing up Catholic, you read about saints who disfigured themselves—St. Lucy who cut out her eyeballs, Saint Agnes who cut off her breasts, etc. How did you relate to all this holy disfigurement?

There was resonance for me as a kid, only I was in denial about being disfigured. So they would be these secret thoughts. I write in the book about a Christmas scene with a plastic Jesus and his eyes were askew and his mouth a little off so that he looked a little weird. So I would see that and think, "Oh, he looks kind of like me." But I would never say that. I would never think of it outwardly consciously. It was always an underground thing. I wanted to be like the saints. I wanted to be a good boy. I wanted to be acceptable to other people and whatever I thought God was.

So much so that you wanted to be a priest when you were 13, but they rejected you because of your appearance. What impact did that incident have on you?

Up until then, I was always in a safe place. I was really loved by my family, my mom used to tell me how smart I was, I played ball...It was sort of a classic 1950s working-class childhood, growing up in the steel-belt part of Northern Indiana. And part of that was having an idea of God. When you grow up as a Catholic, you don't find God unless it comes through the priest. That's what I was used to hearing. So when the priest said that, it was like God saying it. It had an impact on me for a long time until I started dealing with being disfigured. Until I started talking about it.

Despite going away from Catholicism, you mention God in your book. Who is God to you?

That's actually something I think about. God to me is not an entity, God is an experience. So it's easier for me to say I find the divine in nature, in good relationships and in my own creativity. I thought that was a spirituality I had figured out for myself until I realized that it is what the nuns were trying to teach me back in Catholic school, the concept of three persons in one God. You know, the creator—nature, relationships to teach us to love one another and creativity is the Holy Spirit. So I was arrogantly thinking that I had latched onto something, but really it's old-time stuff. So God is an experience.

You have a chapter where you write about the impact massage had on your life and how it helped you connect with yourself and your wife. Why is touch so important to you?

As I look back on my life, I think that touch has been a real healing thing. It's a funny thing, but I never talked about my face until I got on stage in my 40s. For years I had this idea that if I didn't talk about my face, then nobody would notice it. I never let people touch my face. It's like a personal area. It's intimate. There's a lot of energy that goes into feeling acceptable to other people, and touch helped me to relax that tension a lot.

In the section where you are examined at UCSF Medical Center by a group of doctors, you write that in those situations, you go into a hibernating state so you can mentally disengage.

I still have those old habits of disassociating, but some of the feelings are coming out a little bit more. I recently had some laser treatment and part of the treatment is something like 35 shots in my face. Now, the shots don't hurt—or they hurt just a tiny bit—but the whole idea of needles coming at my face.... A lot of this stuff happened before I was 3 years old, so there's not a cognitive memory there, but there's a cellular memory, so when I was getting the shots, I started crying and shaking all over. Part of it was that the injection contained some adrenaline, but I think I had the kind of reaction that I didn't allow myself to have when I was younger. I was supposed to behave and be a good boy and not cry. And you know I was in the hospital back in the days when your parents couldn't come visit you, or they could come two hours on Sunday and stuff like that. It was not a pleasant experience. So have I been in the hospital a lot? I'd say I've been in the hospital just about the right amount. I think I've used up my quota. I'm done now.

Since your family never talked about your face when you were a child, what was their reaction when you started talking about it on stage in front of hundreds of people?

At first, they said, what do you care about this? Why are you talking about your face? They didn't understand. To them, they know I look different, but I've never seemed different. I was the bratty older brother. So they were wondering why I even bother. But I performed for the Clinton White House in 1999. I was really nervous but when I went out there, as soon as I got on stage, I got in the zone. I did really well. And out in the second row were two of my sisters and one of my brothers and Marlena. They were all crying. That's the thing I remember from the White House—nothing about politics, but my own family and having that effect on them.

You say your face is like a mirror for other people. What do you mean by that?

This is one of the things that took me a long time to learn. The face is the place people think of as giving them personality, a persona—especially in this country, where appearances are very important. So I think that someone who looks different symbolizes or reminds people that they are disfigured, too. People used to come up to me in the early years of my show and tell me how courageous and inspiring I was. My reaction would be to think, "Well, you're pathetic. Get a life." But that was because I didn't have any respect for their experience and I didn't have respect for myself. I've learned over the years that I remind people of their own flaws. I think they are vulnerable to fear—the idea that human beings are imperfect. Because we are. We all have to deal with that in some way.

Is that why you say that pity is about fear?

People project their own fears onto someone who is visually disabled. Sometimes people come up to me and say, "Oh you poor man, you must have suffered so," or once in a while something like, "I'd kill myself if I looked like you." I no longer try to judge them or think that they should get some sort of perfect statement to me. I can find a heartfelt thought in whatever they tell me. There's some good-hearted thing in everything like that. So it's a question of what do I want to concentrate on—to have arrogance about their attitude toward me or, on the other hand, to realize that they think they are saying something nice to me. And they're doing their best, so good for them.

You have had some people react cruelly to you—like the man who spit on you and said you were the ugliest thing he has ever seen. What motivates that kind of behavior, do you think?

I don't really know because I'm not them, but I think there are people who are, like, really cruel. I think that I can understand that. Maybe there's some genetic thing that we don't know about. And you know what? Alcohol. Alcohol can bring out stupidity and cruelty. Also immaturity. You see teenagers, sometimes in a group, who'll be mocking and cruel to impress each other. Outside of that it does seem to me, and maybe this is just my habit of dealing with it, that it is caused by their own insecurity. And I think that people who haven't dealt with their own frailties and flaws can feel like pushing it onto other people.

Do any reactions to your face really annoy you?

Well, I think part of it is that I'm vain, so I don't like things that surprise me. Not long ago, Marlena and I were out shopping and I was trying on a shirt, and she said, "Oh honey, not that style of shirt. It doesn't look good on someone with short arms." And I was like, oh s--t...you know. She's never mentioned that she was disgusted by my stubby arms before. I find that I'm getting to the age where something like that can surprise me. But you know, I am actually quite confident in myself. I carry myself well and it's amazing how that affects how people react to you. But once in a while when I'm having a bad day for whatever reason, then a remark can piss me off.

In the book, you mention a lot of moments—moments of grace, moments of unconditional love, moments of prayer. Why just moments?

I don't believe in your whole life changing in one moment, like the story of St. Paul in the Bible or being born again and that's that. I've never had that experience, and all I'm writing about here is my experience as much as it comes to me. I've always thought that faith was some kind of cosmic thing—you know, if you have faith then you totally believe. Well, I've never had that. I've had moments of faith, I've had moments of grace and that's what I've had. I've been kind of embarrassed about that, like that isn't enough, but it's just the reality of what life has been like for me. The more I talk about it, the more people relate to it. I think, perhaps, that it's a more common experience than total faith.

The Church of 80 Percent Sincerity is, as you say in the book, a sometimes dour worldview. Do you find it to be a fulfilling kind of spirituality?

I think it's a question of self-acceptance. As I say, I have good days and bad days, and it's better that I accept myself as I am. A lot of my life is morally charged; I have a sense of moral and social responsibility. You know, I came from a Catholic background and was a communist, wanting to change the world. I thought that's what I was supposed to do. I stopped being a Marxist after working with a childcare switchboard in San Francisco and talking to parent after parent, mother after mother, who needed help with their kids. The politicians always say, "Oh the children are our future," but then when it came down to reality, they aren't. So I feel like it's sometimes difficult for me to be filled with joy or happiness, so I tend to say am I being responsible, am I being productive? I'm getting better about joy and happiness and that sort of thing but I'm still searching in that direction. I do find happiness, but I feel like it comes in moments. It is satisfactory and I'm getting better.