Father Malcolm's story of his son, Holden, now in his midthirties, reveals the quiet heroism of parents caring for a troubled child at home.
We began by talking about Holden's boyhood.
Holden was a happy child, ebullient, sweet and caring, with a sense of humor, who grew rather serious in his teens. Like his brothers, he was home-schooled, in part because all three had learning disabilities/neurological problems. Holden had auditory processing problems that made it hard for him to understand directions. He was a sensitive child and young man, serious about religion, a wonderful athlete and skier. He had no trouble with drugs or alcohol. He had friends. He was the last person, a friend later said, you would expect to have a psychotic break.
At college he majored in music. He played guitar, as well as bass, drums, and keyboard. He graduated with honors, and he was able to earn his living as a musician. People say you can't do that, but he did. He rented a room in the house of a friend and was able to line up students, and to perform himself and also to compose music for theater.
Then we got a call from the friend whose house he was living in. She was concerned that he was depressed, worried about suicide. When we saw him he explained that he was on trial by a government agency and attack was imminent. There was a SWAT team rappelling down the side of the building.
How did you react all of this?
I had a physical reaction. My intestines reacted. And I was devastated. I cried a lot, I was sad. It was hard to focus. I didn't sleep well. I still don't sleep well.
But Holden agreed to check himself into a psychiatric hospital. After five weeks of treatment, which I think now was mediocre, he transitioned to a day program, and then began to find students and go back to working for several studios. But he was rather isolated because he was working so hard.
Four years ago, Holden had another break. I was able to relocate to a church in a small town that has a rectory with enough room for us and Holden. The people close to the church have been very kind.
We've seen psychiatrists. They're supposed to see you for fifteen minutes. We had one session that was nine minutes. Even when Holden takes his medication, it doesn't take away his delusions. But it sedates him. I've done research and found that the United States doesn't have good long-term outcomes for people with mental problems.
The place that has the best outcomes is Western Finland. That's where Jaakko Seikkula pioneered the Open Dialogue approach we're using now. The idea is that the kind of problems Holden has are the result of trauma. The goal is to rebuild the person suffering and his relationships. We meet with our therapist in person or by Skype. Sometimes Holden's brothers join us. In the beginning Holden wouldn't join the conversation. For the past three months, he has been talking more in our sessions. I hope he will become an agent in his own recovery, that eventually he will have the capacity to thrive in society.
I see Holden not as mentally ill, but as someone dealing with hurt in his life. I don't think it's a matter of bad genes or bad chemicals or a broken brain. We all hear voices, we all get paranoid, we have times when we're down, we get manic. But he's stuck. He's an ordinary human being who's experiencing extraordinary circumstances that cause severe mental distress.
What do you think caused his distress?
I think our move to a large and troubled church when Holden was a boy hurt him—the move itself, and my preoccupation with the problems of the church. Another trauma was a consultation with a specialist about a spinal condition. He was in his teens then. The doctor tried to scare Holden into having surgery, told him he would die young if he didn't agree to it. He fainted.
Do you feel responsible for Holden's problems?
I have made mistakes. I feel it's important to see where my responsibility lies and live with that truth. I feel forgiveness by God.
How do you cope with Holden's illness?
Living with Holden is the most challenging thing I've ever done. I don't have the concentration to read and write the way I used to. I feel I'm always off balance. Carol has lost weight, too much. She goes to a support group. I have a spiritual advisor. We try to get out together.
What is a typical day with Holden like?
It's very challenging. I try to love him. That's the best option. But it's easy to be impatient. We don't have routines. There is no typical day. On Sunday Holden took a shower, the first in months, and attended church and coffee hour. Carol and I had lunch. We went out for a drive to the farm stand. Holden didn't eat all day. Sometimes he doesn't eat or drink for days. He went up to his room and lay in bed saying his mantra. (He repeats it endlessly as he paces around the house.) "All the pictures you've shown me are unacceptable. All the pictures you've shown me are unacceptable." The pictures are beamed to him from Hubble.
Carol went up to ask him to drink some water. I didn't know what to do. At nine I went out for pizza. At midnight I went to bed. I didn't sleep very well, but I had morning prayer and communion the next morning. Carol stayed up till 1:30, and finally was able to persuade Holden to take his sleeping medication. Now he'll sleep most of today.
What would you like people to know about your experience and your son's?
This happens to a family, not an individual. The family needs support. A lot of support. You're being hurt everyday.