Dan and Sue Hanson
Room for J: One Family's Struggle with Schizophrenia
Dan Hanson is the father of a son with schizophrenia. He has written about their experience in Room for J.
Sue Hanson is the mother of a son with schizophrenia.
May 4, 2006
KRISTA TIPPETT, HOST: I’m Krista Tippett. “Today, Room for J: One Family’s Struggle with Schizophrenia.” Schizophrenia afflicts one in 100 American adults and often has a religious dimension. This hour we’ll hear how one family has learned to see human nature and religious experience differently.
MS. SUE HANSON: We call it a delusion, he calls it reality. People tell him he’s not God, he’s not Jesus. In his mind, that’s as real as my being a wife and mother.
MR. DAN HANSON: In some ways, we’re very fortunate because Joel is still with us and he’s still connected, but tomorrow we could lose him. And we live in that knowledge and live in faith that, no matter what happens, that our caring made a difference.
MS. TIPPETT: This is Speaking of Faith. Stay with us.
I’m Krista Tippett. My guest today, Dan Hanson, has written an unusual book about living with his son who has schizophrenia and who believes that he is God. Dan and his wife, Sue, reflect frankly this hour on how they’ve learned to see mental illness, normalcy and religion differently.
From American Public Media, this is Speaking of Faith, public radio’s conversation about belief, meaning, ethics and ideas. Today, “Room for J: A Family Struggles with Schizophrenia.”
MS. TIPPETT: Dan and Sue Hanson raised their family on a small lake in a suburb of Minneapolis. Dan was a corporate executive who eventually left to pursue his first love, teaching. Sue worked part time, volunteered in the community, and raised their three children. Their youngest, Joel, who is now 30, was always adored by his parents and two older siblings. He was a delightful child, though, as his parents say, special. Intense and thoughtful, prone sometimes to fragility and sometimes to a single-mindedness that bordered on arrogance. After he had a psychotic break as a young adult, he was first diagnosed as bipolar, then schizophrenic.
Schizophrenia is a debilitating brain disorder that interferes with a person’s ability to think clearly, to distinguish reality from fantasy, to manage emotions and relate to others.
Over the years, Joel has intermittently been hospitalized, he has disappeared temporarily, and he has held down jobs. He once moved to Alabama to become a preacher, another time he flew to California after voices told him, he said, to become a famous model.
I met with Dan and Sue Hanson to hear their story and the insights they have to share with others, including how they’ve grappled spiritually with schizophrenia.
MR. DAN HANSON: In retrospect, you know, you tend to look up or to invent symptoms if you don’t watch out, because we always knew that Joel was a little different because he was so innocent and so direct. But until the episode occurred, we just assumed that he was a different kid. The episode itself was a shock, and I think it put us into a place where we didn’t know who we were, let alone who he was and what to do with it. And so the announcement when he came home and told us that he was God was — the only way I can put it is it put us into a tailspin. And for a while, I’m not sure that we really knew even what to feel. It was almost like a numbness that set in, because here was our son, who we loved, who we thought was actually special and a gift, and his behavior was frightening and bizarre. And so we almost had to get reacquainted with him, and that was the start, I think, of the process of getting to know Joel as a separate person.
MS. TIPPETT: How old was he when he made that announcement?
MR. HANSON: He had just turned 20. Is that correct? Yes.
MS. HANSON: Right.
MS. TIPPETT: I can’t imagine. I mean, I wonder if, when someone makes an announcement like that, you must have reacted with disbelief at first. I mean — or was it so clear that he wasn’t joking? Was it just so clearly serious?
MR. HANSON: Well, I think he had been — we could see that he was becoming manic, I think, two, three weeks before that. He was — his speech was becoming faster and faster, he seemed to need less sleep, he seemed to be living in sort of a different dimension. He told us that he was going to become a famous basketball star, and we knew that he was not in touch with what we call reality. And so the day that it happened, actually, there was a phone call, and Sue took the phone, and Joel was just elated and almost crying and talking about this new life that he was going to live and that he had run into this person who was an old friend, but was actually someone that he had to go away with because he was his counterpart.
MS. TIPPETT: His kind of spiritual counterpart.
MR. HANSON: Yes. This particular character became the devil and — or the anti-Christ. And he was both lured into and afraid of this character. So it was — to us, it was obviously a total mystery, but to him it seemed to make absolute sense. Everything had been revealed to him. And this interesting kid that we had who was innocent and naïve in many ways, suddenly it was as if he knew his calling. It was as if he knew his purpose in life. This was it.
MS. TIPPETT: Which, on one hand, is something you want for your children, especially when they’re 20 years old.
MS. HANSON: Exactly, yeah. Exactly. Any parent whose child either develops a chronic illness or mental illness, something that is so overwhelming, I think you step back and you go, “Well, this can’t be happening. This can’t — this isn’t happening. This is going to be OK. We’re going to be able to get some pills and make this better.” And I think, as it progressed, even a matter of just days, not even weeks, we realized very quickly that this was something that was far more serious, and we weren’t going to be able to just wish it away or make it better quickly.
MS. TIPPETT: I think it’s important to talk right away about the biological foundation of this illness. I mean, you talk about how — and I’m sure this is natural, this is true with all illness, of all kinds, especially with our children, we wonder what we could have done differently.
You know, you write, Dan, that you did develop a real appreciation for the biology of this mental illness. One in 100 adults in this country suffers from schizophrenia. You know, that’s a very large number.
MR. HANSON: It is. And a lot of them, I think, live in this shock that we were talking about, without getting a lot of support and help.
MS. TIPPETT: Right.
MR. HANSON: And that may lead to the answer to your question regarding the biology of it, because a couple of things happened for us when we realized the biology part of the illness and the neurotransmitters that weren’t working right in Joel’s head. The statement that he made at one time, it was as if seven TV sets are blaring off in his head and he was getting these telepathic messages and messages from us and from his sister and brother to do things that he — that was just absolutely amazing. And so the biology helped me come to grips with here was someone who doesn’t think like I do. And I think the other piece was that, as you mentioned, it’s difficult for parents when your child or someone you love develops an illness, because you feel like somehow there’s something you did to cause it. And when it’s a mental illness, it’s even more so. You feel that somehow it had to be my parenting…
MS. TIPPETT: Your parenting style.
MR. HANSON: …or what we did, or whatever. And realizing the biological side of it I think helped us get past that blaming ourselves phase where we were able to accept Joel, and to accept the fact that we didn’t cause it and that there was something going on with him much the same as our daughter, who’s a type 1 diabetic, something wasn’t working right in his body.
MS. TIPPETT: But somehow it’s easier to understand something like diabetes as a biological problem, because the manifestations of the illness are physical, and with mental illness — this is true of depression as well, which is much more common…
MS. HANSON: Absolutely.
MS. TIPPETT: …the manifestations are emotional and mental, spiritual.
MS. HANSON: Absolutely. It was amazing for me, because it was like a weight had been lifted off my shoulders.
MS. TIPPETT: When the doctors told you it was…
MS. HANSON: The psychiatrist looked at us in the face and said, “This is absolutely biological. This is nothing you did.” We had been going over and over and over, “Did I do this? Did I do that? Did I not give him enough? Did I give him too much? Did I — was I hard on him? Was I not hard enough on him?” All sorts of things. And in my head, at least, I thought I had been a better parent to him than I’d been to the two other children. Not that…
MS. TIPPETT: He was your youngest.
MS. HANSON: …not that anything was so awful. But, I mean, just I was more patient, I was a little bit more experienced. I felt like I pulled him onto my lap more often and talked things over. And so it was such a blow. And when the doctor — the psychiatrist said, “This is simply biological,” it was just a gift.
MS. TIPPETT: Sue Hanson.
I’m Krista Tippett, and this is Speaking of Faith from American Public Media.
Today I’m speaking with Sue Hanson and her husband, Dan, who’s written about their family’s struggle to come to terms with their son Joel’s schizophrenia.
Joel’s illness has a religious dimension. He has written a manuscript called A Guide to the Universe, which begins with these words: “In writing a book about the greatest entity or living being, God, myself, Jesus Christ reincarnated, Ishua, Jehovah, J, Joel Steven Hanson, infinitely 99.999 percent of the universe, the greatest individual independent being, I put much care into writing the truth.” Joel’s symptoms are tempered somewhat by a heavy regimen of antipsychotic medication. In his book, Joel’s father, Dan, struggles passionately with the double-edged sword of psychiatric pharmacology.
MR. HANSON: As you probably know, these medications also carry with them serious side effects. And so there’s this dilemma that you’re put into as a parent. You want to do what’s best for the person you love, and you want to make sure that he gets the best medication and the best pharmacological help, but you also realize that most of the antipsychotics and neuroleptics and mood stabilizers are treating symptoms and they also alter the brain and they bring with them potential side effects. The other dimension of it for Joel is that Joel, like all of us, wants to be treated with respect. He wants to be confirmed as a special person. He wants people to believe in him. And when he’s treated as if he needs medication to make him real or to make him a person, he has a very, very difficult time dealing with that, and he feels treated as if he were child. And that is a difficult thing for a parent to watch happen to someone you love very much and who you imagined would spread his wings and do his thing and become a person in his own way. And here he is being forced to do something that he does not believe he needs and doesn’t want to do. And that’s…
MS. TIPPETT: Has that always been true, that he didn’t want to take the medication? Or he’s never seen the point?
MS. HANSON: No, he’s never thought he was ill. He still doesn’t believe he’s ill. And so he fights the medication at every turn. I mean, he takes it under commitment only. And as soon as he’s off commitment, it’s a matter of usually days, sometimes hours, and he’ll go off the medication immediately. So he’s been on most of the major antipsychotics, almost all of them, at different times, and nothing has taken away his delusion. And we call it a delusion, he calls it reality. People tell hi he’s not God, he’s not Jesus. In his mind, that’s as real as my being a wife and mother.
MS. TIPPETT: It strikes me, when I read the stories in the book, that there’s such a fine line between, you know, fantasies that are out there in our culture all over the place that we all enjoy, you know, a world where anything is possible, where he sits in snow with no jacket waiting to be transformed — I’ve seen, you know, I’ve seen episodes of The X-Files, which I love to watch. You know what I’m saying? There’s such a fine line between images that we kind of celebrate and then what he’s given himself over to believing and representing.
MS. HANSON: I think, for him, the difference — or one of the big differences between the fantasies that we embrace and his reality, if you will, is that he can’t then function in society. It doesn’t allow him, then, to be anything less than God, whether he’s at a job or whether he’s in a relationship with a woman, which all of his relationships are in his head. And so it’s all telepathic. And so this doesn’t allow a lot of room for communication with other people.
MR. HANSON: Which is why I think we play — we’ve come to accept Joel, including his belief system, and we don’t try to change his belief system, we accept him for someone who believes he’s God. And when I take walks with him, I let him tell his fantasies and his — and some of them are quite profound, his perception of things. And it’s why I included a piece of his in the book, I think, is that he does have powerful insights, if you read between the lines or if you look at words like he does, created at the moment. And I think in doing that, we have become, in some ways, his touchstone to this reality, and he appreciates our acceptance. And it took us a while to really get that, that he…
MS. TIPPETT: That’s really interesting.
MR. HANSON: And even last night, he called Sue and told her about his telepathic girlfriend, who he’s never met, but he talks to every night. And she just has this conversation with him. And it makes such a difference to him when we — once we’ve done that, he feels like “someone’s listening to me, someone’s hearing me.” And at the risk of getting off on a tangent talking about that and — I’ve always been intrigued by the philosopher and theologian Martin Buber’s “I/Thou” concept, and I always thought I knew it intellectually, but…
MS. TIPPETT: Describe that idea for, you know, somebody who’s listening, who hasn’t read Martin Buber and how that relates to Joel.
MR. HANSON: Well, from my reading, and I’m not a theologian…
MS. TIPPETT: That’s fine.
MR. HANSON: …so mine is sort of a naïve perception of Martin Buber, but I’ve always been intrigued by Martin Buber’s thoughts around the god of the — in between the god that emerges in the relationship that you have with someone when you let go of all of the things in life that perceive that person as instrumental to any means that I have. Joel has taught that to us in a new way.
READER: A reading from the Austrian Jewish philosopher and theologian Martin Buber’s classic 1923 work, I and Thou.”The relation to the You is unmediated. Nothing conceptual intervenes between I and You, no prior knowledge and no imagination; and memory itself is changed as it plunges from particularity into wholeness. No purpose intervenes between I and You, no greed, and no anticipation; and longing itself is changed as it plunges from the dream into appearance. Every means is an obstacle. Only where all means have disintegrated encounters occur.”
From Martin Buber’s I and Thou.
MR. HANSON: With Joel, you are present in a bizarre moment, and you quit trying to finish his sentences or you quit trying to make sense out of it, you quit trying to be rational, and you just — it’s unexplainable. So in a way, that’s a gift that Joel has given to us. And I think it’s the reason that we keep caring and keep the door open so that he can have those moments with us, but, more so, that maybe, for selfish reasons, that we can have those moments with him.
MS. TIPPETT: What’s kind of paradoxical about that is that in accepting his fantasies, if you want to call it that, or his unreality, you in fact tether him more to reality in a way that doesn’t happen when you try to convince him that he’s wrong.
MR. HANSON: Ah, yes.
MS. HANSON: The big acceptance has been not trying to tell him that he’s wrong. I mean, it took me a long time to get to the point where, as a parent, I wasn’t saying, “Oh, gee, you don’t really think that.” It’s that mother thing in you. And it’s just been in the last couple years, really, that I’ve been able to step back and appreciate him for the person he’s become, which, by the way, is absolutely nothing like what we thought he was going to be. Not that we envisioned him to be a doctor or a lawyer or anything like that, just, you know, we thought he was going to grow up and probably marry and have relationships like his sister and brother and have a life. And that wasn’t happening. So it’s been interesting to try to accept this person that’s here instead. I think our oldest son in his writing put something in there about it’s as if aliens came and took my brother away.
MS. TIPPETT: Oh, I read — he said he was going to write a movie, Schizophrenia: Invasion of the Soul Snatcher.
MS. HANSON: Yeah. And that this other person was kind of left behind. And it is sort of like that. I mean, this is a different person, and I’ve grown to love him deeply and appreciate who he has become and the man that he is and the kindness and gentleness of his spirit. And I do see God in him.
MS. TIPPETT: Sue Hanson. She and her husband, Dan, are speaking about the practical and spiritual lessons of living with their son, Joel, who has schizophrenia. Dan Hanson includes portions of Joel’s writing in his book, Room for J.
MS. TIPPETT: Joel has written a book called Guide to the Universe. I just want to read a little bit of that. “I must tell you now that you all have a hard time with change and proper growth. The past here on Earth is not that good, so why do you rely on it so much and neglect and abuse the gifts of the present and the future, as you do not create your own language, nor do you honor, respect, and understand mine well enough. You are all so scared because you do not realize well enough that fear is ultimate evil.” And then a little bit later, he wrote, “I know, and it has been said, that ignorance is the opposite of love. There is no love in ignorance. I believe that!” he says, exclamation point. “If one ignores something, they cannot understand it ever, for they are pushing, sometimes, good things that are necessary to better their lives away from them.” That’s very wise and provocative and intriguing.
MS. HANSON: It is. I mean, it’s…
MR. HANSON: Yeah.
MS. HANSON: We too, we spent hours trying to make sense of his writings, and there’s — that’s one of…
MS. TIPPETT: That’s very coherent. Those are coherent passages. Yeah. And some of it is more rambling.
MR. HANSON: Right.
MS. HANSON: But he does have wonderful insights.
MR. HANSON: He does. And that’s the kind of stuff that he talks to us about. Once we open the door to the conversation and don’t try to fix him or don’t try to change him, he will reveal that kind of wisdom to us and talk to us for hours, literally, if we let him.
MS. TIPPETT: But you do say that people have said to you, “Oh, in another culture, he would have been a shaman or a prophet,” and that that makes you angry. Why does that make you angry?
MR. HANSON: I think that my response — emotional response to that is that oftentimes people say that as if, well, other cultures would have found a spot for him, and so we should be so happy that he could be — could have been a shaman, and that should make us feel so good. And I think what upsets us sometimes is that they don’t understand the other dimensions, or the other parts of dealing with mental illness and the sitting in the snow waiting for the aliens and Joel feeling that he can dodge bullets, or driving without his headlights or putting himself into dangerous situations. And so, whereas I appreciate that, I also sometimes perceive that to be a trivialization of the emotional magnitude of the illness itself. And I think the truth is that Joel could perhaps also have been an outcast, and I think I include in the book R.D. Laing’s perspective on some of the prophets in the Bible perhaps displaying some symptoms of schizophrenia. But the prophets weren’t always treated so greatly either, and maybe Joel is a prophet in some ways, because he does remind us of things that we need to be reminded of.
And just the piece that you read, some of the wisdom that he has written and he talks about, I think, is difficult stuff to hear, such as prophets do — or want to say now and then. But he also needs to live in our reality, and we also deal with the difficulty of helping him do that so that he can survive and perhaps even thrive sometime — some day. And so it’s so much more complex than just sort of conjuring up some spiritual role and saying, “Ah, he could have been a shaman.” Yes, he could have been, but it isn’t quite that simple.
MS. TIPPETT: But it is just — I don’t want to say “fascinating,” because it’s terrible and excruciating, but — I mean, it does remind you of the complexity of, you know, what it means to be human and the interplay of our bodies and our minds and ourselves and the world around us.
MS. HANSON: I think you hit it exactly. It’s terrible and wonderful at the same time. It is. I mean, it’s atrocious. It’s the most awful thing I could ever imagine as a parent. I really thought — Dan’s been through lots of surgeries and cancer and a terrible automobile accident, we have a daughter with diabetes. I really thought I kind of understood chronic illness and pain, but this is amazing. Mental illness is an amazing thing. It takes over your life and it just doesn’t let go. Especially serious mental illness, it just — it’s just there.
MS. TIPPETT: Sue and Dan Hanson.
This is Speaking of Faith. After a short break more of their story and insights. We’ll ask how the religious component of their son’s mental illness changes their ideas about the nature of religious belief in all of us. Also, is there room in our culture to consider a schizophrenic personality as another form of human difference and diversity?
This exploration continues at speakingoffaith.org. This week find more on the Hanson’s story and practical resources and background on mental illness and schizophrenia. With SoF on demand, you can download an MP3 of this program to your desktop and use the Particulars section as a guide. Or subscribe to our free weekly podcast. Listen at any time, at any place. Also, find my journal on this week’s topic and sign up for our free e-mail newsletter. All this and more at speakingoffaith.org.
MS. TIPPETT: Welcome back to Speaking of Faith, public radio’s conversation about religion, meaning, ethics and ideas. I’m Krista Tippett. Today, “Room For J,” the title of a book written by my guest, Dan Hanson, chronicling his family’s struggle to live with and learn from the mental illness of their son, Joel.
Joel, who’s now 30, had a psychotic break when he was 20. Religious delusions are a common symptom of schizophrenia, a brain disorder that affects approximately 2.2 million American adults, or over 1 percent of the population age 18 and older. Some sufferers believe that they commune with or become angels or demons. Joel Hanson believes that he is God. His parents, Dan and Sue, have been describing how they’ve come to accept Joel on his own terms, so long as he’s not hurting himself or others. In doing so, they are able to sustain a relationship with him and make him feel that there is a place for him in this world. I wondered how living with Joel changed their understanding of the basic question of what it means to be human.
MS. TIPPETT:You know, you’ve talked about him kind of having different selves, and when I read your story, even when I look at the pictures of him that are in the book, you know, it’s kind of like the expression on his face is different, his eyes are different. I mean, am I imagining that?
MR. HANSON: No, you’re not.
MS. HANSON: Absolutely.
MS. TIPPETT: And so, I mean, it is almost as though that little boy became someone different. As you’ve said, he’s not the person you thought he’d be. Well, none of us know what our children will be like, but this is different.
MS. HANSON: Right.
MS. TIPPETT: I mean, how do you think about the human spirit? Looking at Joel, do you have different questions than you had before?
MR. HANSON: Well, when I look at Joel — if Joel were sitting here right now, his spirit, his belief, his living in hope, and it’s just absolutely amazing the stuff that he’s been through and the places that he’s been forced to live. And for me, it’s sometimes the strength of his spirit has actually held me up. I think I write in the book the piece where we visited him in the psych ward one of the first times, and we were just devastated and we were so worried about him, and what was going to happen, and he sort of put his arm around us and said, “It’ll be OK. Don’t worry about it.” And so if you were to ask Joel a question, “How are you?” “Well, you know I’m always getting better, Dad.”
MS. TIPPETT: Really?
MR. HANSON: That would be his standard answer. “I’m always getting better.” Because he just believes. And part of it is his belief system that he’s God and that he’s connected to the universe.
MS. TIPPETT: What is that he says, that he’s 99.999 percent of the universe?
MS. HANSON: I think we’re the rest of it.
MS. TIPPETT:: We’re the other .001 percent. Yeah.
MS. HANSON: But he’s very connected to the idea, I think, that — not that God is necessarily in each of us, but that we’re all connected. Somehow, there is something within each and every person that connects us one to the other. And it sounds kind of new agey, but it’s very much where he comes from. It’s very spiritual and very — at the deepest level. He has the utmost respect for human life, other human life. And not his own necessarily, because, of course, he doesn’t think he’s human. He doesn’t. I mean, he doesn’t. He doesn’t consider his body to be…
MS. TIPPETT: So fallible.
MS. HANSON: …so fallible, no. Even now, on strong medication, he pushes himself absolutely to the limits. But his spiritual connection is quite beautiful and to be respected.
MS. TIPPETT: But is it the same person? Do you feel that this is the same person you raised from…
MS. HANSON: Oh, no, absolutely not.
MS. TIPPETT: So where did that other person go?
MR. HANSON: Well, you know, I’m thinking about how we all change. And, as you pointed out, we sort of evolve, and, as we take on new things, we become new persons through our new relationships and our new involvement. And sometimes it’s been said that schizophrenia causes yourself to get stuck in time, and in some ways that’s true, because once Joel created this identity of being God and Jesus and all-encompassing in the universe, it was such an identity that could protect him from anything and everything, and it became stuck in time.
But where did that little boy go? I don’t know. It’s almost as if I look into his eyes and I see this little boy who was sort of vulnerable, who was very sweet in his own way and mischievous at times. And every once in a while, he will joke and kid in ways that were very similar to what he was like when he was a teenager. And we’ll get this glimpse of Joel that was more like the Joel that was — that we communicated with prior to the psychotic episode. And so it’s as if, in Joel, like all of us, are all these selves that have emerged, but that the god Joel has taken over and become the dominant part of his life and is his true identity in terms of his belief.
MS. HANSON: I think that he’s continued to be a very loving and kind person. And I’m hoping, at least, that we were somewhat influential in that, because he was greatly loved. I mean, he was born our youngest, and all four of us thought he was just wonderful. And so I see that as a big plus.
MS. TIPPETT: Sue Hanson.
I’m Krista Tippett, and this is Speaking of Faith from American Public Media. My guests, Dan and Sue Hanson, struggled with their son Joel’s schizophrenia in isolation for several years before discovering a resource in NAMI, the National Alliance for the Mentally Ill. Sue is now co-chair of the legislative committee of her regional NAMI chapter. Dan has written a book about their family’s odyssey that does not flinch at the complexities and heartbreak of Joel’s disease. But he also raises provocative questions about mental illness as a form of human difference.
MS. TIPPETT: You know, I kind of feel like, on the one hand, you know, you’re living with the fullness of this mental illness and with doctors and with medications, and you’ve educated yourselves and you belong — you work with NAMI; but there’s a way in which you kind of are pushing at the concept of mental illness as a limiting concept. You know, and you have quote near the end of your book from Margaret Mead, “If we are to achieve a richer culture, rich and contrasting values, we must recognize the whole gamut of human potentialities, and so weave a less arbitrary social fabric, one in which each diverse human gift will find a place.” And I kind of think, you know, what you’re saying there is that schizophrenia, or the way Joel is, which includes this fact that he is schizophrenic, is also a point of diversity or difference, that we make a lot of that word in our culture. Is that right? Are you…
MR. HANSON: Yeah, that is exactly what I’m trying to say. But having said that, I also realize that it’s easy for me to say that and for Sue to say that, but it’s much more difficult for the world to accept Joel for who he is. And I know that without us, he would perhaps have a more difficult time, because there aren’t a whole lot of other people that are willing to listen to Joel or to have the conversations with him that he likes to have. And so as much as I would love to think that Joel could be part of what we call diversity, reality sets in for me, too, and I realize that that probably can’t happen, because every time Joel goes off medication and becomes psychotic and what we would call manic and manifests his God powers to the degree that he believes he has — he can, society won’t let him do that.
MS. TIPPETT: Well, and this kind of difference is frightening.
MR. HANSON: It is.
MS. TIPPETT: And if you met a stranger exhibiting these symptoms, it would just simply be frightening. They don’t know him as your son.
MR. HANSON: Yeah.
MS. HANSON: Exactly what I was going to say. I think that the difference with mental illness is that it can be extremely frightening, and justifiably so. Many people who have mental illness do grasp onto a greater different reality and a different personality. And some are gods, some are Jesus, some are Satan. And so that’s — you know, that puts it in a different perspective completely. So society certainly can be excused for being a little taken aback by mental illness. But I think society also needs to step up and look at it in a new light and say, “This could be my son. This could be my husband. This could be my child.” Because they — Joel has a great deal to offer. He’s intelligent and he’s kind and he’s gentle and he’s wonderful with children. I think he can give society the gift of his perceptions.
MS. TIPPETT: You know, you tell these various stories in the book that it has to make me smile. I mean, say, when he was once being taken to the hospital and you saw him really chatting with the ambulance attendant when they got there and — like they’re old friends, and he said, “It’s OK, Dad, he knows who I am.” And he also had a judge once, he said, “He knows who I am.” And, I mean, I think of that ambulance attendant, and it sounds like this was a real act of caring, which completely put your son at ease in what could have been a totally traumatic…
MR. HANSON: And the other side of that is that Joel is very good at putting others at ease, too.
MS. TIPPETT: “I’m God,” and that he’s relaxed with it. And they…
MR. HANSON: The interesting — you know, we’ve had to go through the terrible process of calling the police and an ambulance to get him into the hospital because he needed help and didn’t recognize his limits. And each time we’ve done that, it’s been just terrible, because we’ve gone through this horrible feeling of being Judas and calling the police on our own child. But Joel has handled it so well in every case, and so have — the people associated with the ambulance and the police have been wonderful. But Joel is absolutely amazing in these situations and has the ability to put them at ease as well, and to create a conversation so that, between our house and the emergency room, Joel had created a relationship with this ambulance driver, even though he was sharing with him that he was God and how wonderful it was. And, you know, here they are chatting as if they’re old friends. It was just absolutely — he never ceases to amaze us, I think.
MS. TIPPETT: I want to ask you, we haven’t really talked about, quote, unquote, “the system,” the court system, the medical system, that you have really, really had to deal with intensively, having a son with schizophrenia. I think I want to ask the question this way, you know, Sue, when you said a minute ago that what you’d like — that you understand that this is frightening and that Joel can’t just be out making everyone feel comfortable in society in every situation, just another different person. But, you know, I wonder, then, if that, these people who come into your home and who encounter Joel, who encounter him as a son, a beloved son, in a home with his family, if that’s also a different way, even in that first moment of encounter, changes the interaction.
MS. HANSON: Oh, absolutely, absolutely. Were he a street person, I’m sure it would be perhaps a different encounter, and that’s what we need to look at.
MS. TIPPETT: Right.
MS. HANSON: For sure. I mean, Joel is a beloved son, and they come to our home and they see that we’re this connected family, and there’re many people on the streets who aren’t afforded that same courtesy. Yes, absolutely, there’s — it would change everything if you looked at the person on the street who’s mumbling and carrying on as — this could possibly be Joel in 10 years.
MS. TIPPETT: Sue and Dan Hanson, who’s written Room for J: A Family Struggles with Schizophrenia. I wondered how their own understanding of God has been affected by living with a son who believes that he is God.
MS. TIPPETT: You know, this is a line from your book, Dan, you said, “As you might imagine, it is hard to take God to church with you,” meaning Joel.
MR. HANSON: Mm-hmm.
MS. TIPPETT: I mean, I think a cynic might say maybe we’re all going around manufacturing this and schizophrenia is just showing us that. I mean, is that a reaction you ever had, that you question the whole idea because Joel told you he was God?
MS. HANSON: Absolutely.
MR. HANSON: Oh, yeah.
MS. HANSON: I think we spent hours talking about this.
MR. HANSON: Yeah.
MS. HANSON: I think, for me, the concept of God changed with Joel’s illness. It’s been a long time since I believed that God was out there; I’ve always believed for many — a long time that God was within. But it still changed my perception of God. I used to go to church and consider that God was present, but I didn’t really look at all the people around me. And I think, for me, Joel forced me to see God in him, whether I wanted to or not. And then, thus, you know, by seeing God in him and by being forced to see God in him, I saw it so clearly in others.
MR. HANSON: Yeah. And that it’s not about believing, because Joel has sort of destroyed this belief system notion, because nobody has a belief system quite like Joel. In fact, his belief system is extremely complex, and so it does make you look at spirituality, faith in God as something that is not about a belief system. It’s not about what you believe in, it’s about what you experience and what you’re able to allow yourself to experience in the form of caring and having the faith that, somehow, that caring makes a difference, and that it doesn’t have anything to do with what you believe in. In fact, it’s kind of funny because that line about taking God to church is that, when you’re sitting in a church pew next to Joel knowing that he believes that he is God, and he’s looking around, and whether the congregation knows it or not, he is blessing everyone in that congregation, and he’s blessing the words. And we know that, and so part of you has to chuckle a little bit and kind of laugh and say, “Yeah, God is present.”
MS. TIPPETT: Yeah.
MS. HANSON: I think the other thing for me, the other really big thing that changed was — there’s a quote from, I think it’s Carl Jung, “Bidden or unbidden, God is present.” And, for me, that became very real, because there were many days when I would be so wrapped up in the illness and so down that it was difficult to pray or difficult to feel the presence of God. But just knowing somewhere deep inside me that, whether I wanted it or not, God was around me, lifted me up and continues to do that, and that has been helpful.
MS. TIPPETT: I want to ask you this: At the beginning of this chapter, “The Death of a Child and the Birth of a God,” you quote from Joel’s book, A Guide to the Universe, “There is no love in ignorance.” What do you think he means by that? That’s a very intriguing sentence, “There is no love in ignorance.”
MR. HANSON: It’s hard for any of us to put words into other people, but Joel’s mind is especially difficult to put words into. But there’s part of me that wonders if Joel is saying to us, “Quit being so ignorant. Quit disrespecting me. Quit not listening to me. Quit being so ignorant as to not accept someone like me. Yes, I’m different, but don’t you know that I’m God. Don’t you know that I have wisdom to give you? Don’t you know that I love you? Don’t you know that — why are you so ignorant?” I think — you know, it’s almost prophetic, in a way.
MS. TIPPETT: And that in that ignorance is a failure of love.
MS. HANSON: Yes.
MR. HANSON: Yes. And truth. The truth, as he says at the end.
MS. TIPPETT: Right.
MR. HANSON: And that, you know, almost like, “The truth — you shall know the truth and the truth shall set you free. Why are you imprisoning yourself in this linear thinking?”
MS. TIPPETT: Imprisoning yourself as much as imprisoning him.
MR. HANSON: Yes. One of the things he goes through every time we go into the medication is that, “Why are you trying to limit me? Why are you trying to put me down? You want me to be just like the rest of you.” You know? And you want to cry, because part of you wants to intervene and say, “No, no, no,” and then you know that that would not be the best thing for him either.
MS. TIPPETT: You mentioned that right now, today, while we’re talking, Joel is living on his own and doing pretty well. I mean, what is the prognosis for him, or is there such a thing?
MS. HANSON: No?
MR. HANSON: It’s — you know, if we were to listen to the experts, the prognosis for Joel is perhaps not real good because of his lack of insight into his illness. On the other hand, I have to believe that the longer Joel is able to live in our reality, even though he does not believe that he is of our reality, the longer he’s able to see that there — that he can exist in our world and still keep his belief system and have conversations with people about it, the more optimistic we are that perhaps he will find a way to livein this world.
MS. HANSON: I don’t think his prognosis, according to physicians, according to his psychiatrists, would probably be real good, simply because patients whose insight is nonexistent don’t fare as well.
MS. TIPPETT: And you seem to have no hope that he will somehow stop believing he’s God? I mean, you’ve accepted it.
MS. HANSON: Oh, we absolutely hope. I mean, yes, we hope.
MS. TIPPETT: All right.
MS. HANSON: But I think the reality is chances are good he won’t. And so we try to deal with the fact that it probably won’t change. And so, having said that, I know that his fight will always be against the medication and against the physicians. We’ve worked twice with a physician, with a psychiatrist, to try to take him off medication, to see if that is possible for him to simply function without medication; and it isn’t. He drops off the edge very quickly. And that’s that edge where he puts himself in harm’s way very quickly.
MS. TIPPETT: You know, Dan, you said that you define hope differently because you live with Joel — having lived with Joel. What does that word “hope” mean differently, because you’re Joel’s parents?
MR. HANSON: I think at first we hoped that Joel would get better. We hoped that this was just something that was episodic and that would go away and that there would be some cure. I mean, after all, we have cures for cancer, we have cures for all of this stuff; there certainly should be a cure for this. And then when we realized that there isn’t, we were forced to look at hope in a different way, a hope that I think is much more grounded in reality, a hope that is much more about hoping that his day will be good today, about hoping that he feels good about himself. I mention in the book that perhaps hope is more like love to us, that we continue to love Joel in spite of the fact that we know that he will put himself in harm’s way. We continue to hope for Joel in spite of the evidence that would say that he is probably not going to get better and that he’s probably going to always deal with this illness. We can’t create a perfect life for Joel, but we can love him, we can care for him, we can keep the communication open, and we can keep the hope alive, and who knows?
MS. TIPPETT: Dan and Sue Hanson live in Maple Grove, Minnesota. Dan is a professor of communications at Augsburg College and the author of Room for J: A Family Struggles with Schizophrenia.
Dan and Sue Hanson resist any attempt to romanticize their son’s condition, but their most provocative suggestion, I think, comes as a natural consequence of their very personal struggle to accept Joel and love him as he is now. In a society with room for J, Joel would be seen first as a man, not as a schizophrenic. He would be treated, indeed, as a beloved person with an unusual perspective on life and the world around him. The Hansons’ story suggests that our modern ability to diagnose and classify stands in some tension with our emerging cultural value of diversity. They offer no easy resolution to this tension, but, in pointing it out, they propose that we all might develop a fuller and more demanding imagination about the virtue of human difference.
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This program was produced by Kate Moos, Mitch Hanley, Colleen Scheck, Jody Abramson and Ken Hom. Our Web producer is Trent Gilliss with assistance from Ilona Piotrowska. The executive producer of Speaking of Faith is Bill Buzenberg. And I’m Krista Tippett.