I’ve posted in the past (here and here) about my struggles with mental health. During my adult life, I’ve been diagnosed with anxiety disorder, attention deficit disorder, obsessive compulsive personality disorder, major depressive disorder, bipolar, and psychotic episodes. All of these conditions “required” medication, which in every case made the problem worse. (Not to mention ten years of self-medication with alcohol, cocaine, and opiates, which nearly killed me.)
A year ago, our toddler (then 18 months old) was diagnosed with autism. It was too early then to assign a severity; he’s now been diagnosed Level 2 & 3– pretty severe. At the time, neither my wife nor I knew anything about autism.
My wife is quite the researcher, so she went to work. She would come back with these “revelations.”
Her: “Did you know that people with autism often can’t see faces?”
Me: “Wait, I can’t see faces.”
Her: “No, I mean they can’t read nonverbal cues, like even body language.”
Me: “Yeah, I can’t read body language.”
Her: “Did you know that people with autism often see the world in patterns or pictures?”
Me: “Um, that’s not normal?”
The more she learned the more I realized that there was something going on with me that I had never realized. In fact, I have most of the symptoms of autism (though some of them I’ve learned to manage fairly well).
For example, I’m face-blind. I recognize people by their voices, shapes, contexts, and hairstyles. I don’t read nonverbal cues. I have trouble identifying and expressing my emotions. I don’t read emotions well in others. I’m extremely sensitive to audio and visual chaos. (My wife says that what I call “chaos,” most people call normal sensory input.) I struggle with being aware of social appropriateness– I have a tendency to say the wrong thing at the wrong time and have no idea why it’s inappropriate. I tend to understand verbal expressions literally. (“Look at my face!” “OK, I did.”) I have no idea how to navigate a conversation with more than one person at a time.
It’s better now than it was when I was a child. I’ve learned to compensate in basic social situations. Still, when I read the DSM-V description of communications difficulties, I felt like they were writing about me:
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
I remember, when I was in elementary school, planning out conversations before I approached someone. I would think, “I’ll say this, and they’ll say that, and I’ll respond like this…” and so forth. I could never understand why conversations went off the rails or what to do about it. And I couldn’t understand why, in the middle of a softball game, the other kids didn’t want to hear about dinosaurs or math.
And yes, I do have repetitive behaviors, but they’re subtle. I didn’t even realize I was doing them until I learned what “stimming” was. I fidget with my fingers, play computer solitaire, and pace.
My mind sees the world in processes, so I strive to understand why something is true. That makes it difficult for me to learn disconnected facts, like vocabulary or names, but easy to learn grammar and dates. If I can fit it into a “system,” I can learn it. Abstract ideas tend to make my head hurt.
I often look at a situation and see patterns that are not obvious to other people. The most obvious example of this was my response to the civil war in Sri Lanka. It was the most written-abut war since World War II, and yet no one ever seemed to ask what made it tick. To me, that was the obvious question. I spent a year studying, interviewing, and analyzing, and came up with a paradigm that explained the political relationships that drove the war. This became the basis for the Peace Initiative that started in 1999, and eventually led to a Cease Fire Agreement in 2002 that lasted for six years.
I think this helps me be a good writer. I “see” the story that I’m writing before I begin. I may not have all the pieces yet, but I know where it needs to go. And I can see how the plot elements contribute to the whole (and what’s missing).
As I’m learning, autism offers challenges that have greatly affected my life. My adolescence was an extremely painful experience of isolation and feeling different from everyone else.
But it also offers some unusual benefits. I see the world differently than most other people, and that means I have something unique to offer.
My spiritual journey began, I suppose, the day I realized I didn’t believe in the God my parent’s church talked about. I was thirteen years old at the time, depressed, and certain that there could be no God or He would have helped me. I became an atheist, searching for answers in the realms of politics, eastern religions, and psychedelics.
I found few answers, and my focus gradually changed to alcohol, stimulants, and opiates, as well as literature (and music) about those same topics. Eventually, miserable and afraid that death had forgotten me, I got sober.
The Twelve Step program insisted that I search for God as an answer to my addictions. I didn’t know how to search. For a while, it was enough to accept God as mysterious, unknown force that removed my obsession to drink and use. But the time came when I was forced to enlarge my spiritual life. I scanned the Yellow Pages for churches. (This was long before Google.) I tried several, including one that promised heavy metal music and long hair. Nothing fit. They wanted me, at this point an agnostic, to accept that Jesus dies for my sins so I could go to Heaven. I barely believed in Jesus, felt that my sins were beyond forgiveness, and had no interest in everlasting life.
I stumbled into a Buddhist temple one day, and immediately became fascinated. They didn’t tell me what to believe. They said, in essence, “Do this, and you will see what the truth is.” That I could do.
I studied Buddhism for several years. But again, something was missing. The “truth” they spoke of had to do with my personal salvation. But everything in me cried out for more. There were so many people in the world suffering from injustice, how could there not be an answer in this world as well as the next? (There couldn’t. But I’ll come back to that later.)
I began to pray to a God I didn’t believe in, “If there is a God, let me know You.” And, as a corrolary, I imagined if there was a God, what would He want me to do. This led me to volunteer in Sri Lanka and Thailand, helping the poor and hoping to learn something that would make me more useful to those the global economy had overlooked.
In Thailand, I worked with a Catholic priest whose motto was, “Preach the Gospel always; use words when necessary.” He dedicated his life to helping the poor, most of whom were Buddhists. And he opened the door to God for me in a way no one else had. I actually took communion for the first time in two decades.
When I returned to the U.S., I attended a Jesuit university, where I majored in Theology. I still didn’t consider myself a believer, but I wanted to understand the Bible and somehow make sense out of it. My Old Testament professor, a Quaker, showed me that the focus of the Old Testament is not outlining various sins of individual behavior, but structuring a society that is fair to the poor. He pointed out, for example, that homosexuality is condemned once, while greed and injustice are condemned hundreds of times. Meanwhile my New Testament professor, a Jesuit, began his class with Jesus declaring in Mark, “The Kingdom of God is at hand!” This made sense to me, and I began to believe in the teachings of Jesus, at least as they applied to this world.
As for God, I remained an agnostic. I literally didn’t know. Then, in 1999, I joined a group in Sri Lanka that was trying to end the decades-long war. My work took me int a war zone, where I felt that I came face-to-face with God. My prayer from so long ago had finally been answered.
But I didn’t like what I saw. My vision asked me to believe in the rightness of things. My peace work, it suggested, was right. And so was the war. In some vast architecture beyond my comprehension all this fit together in the Mind of God. Having seen the suffering the war caused to good people, and to children, I couldn’t accept that.
Later I moved to Utah and began making artisan cheese. I gave up peace work. I gave up volunteer service. Yes, I was suffering from PTSD as a result of my experiences. But I was also running from God. I wanted to seek Him, but I was terrified because of what He’d shown me. So I hid for twelve years.
Two years ago, my son was born. It quickly became apparent that my wife and I weren’t going to have enough hours in the day to make artisan cheese anymore. We shut down the business and sold off the equipment. And I began to contemplate what to do next.
There aren’t a lot of jobs in southern Utah. It’s beautiful country and a great place to raise kids. But jobs are few and wages are low. The median income is well below the poverty line.
So I wrote, and I contemplated.
I did my undergraduate in Theology at Loyola Marymount University. I loved it. That’s where I was introduced to the Mennonite theologian John Howard Yoder. His book, The Politics of Jesus,* completely changed my views on religion.
I’ve always felt drawn to do some sort of ministry, but that seemed impossible since I had never found a church I wanted to belong to. Three years ago, during a trip to Denver, I attended my first Mennonite church (there aren’t any in southern Utah), and felt that I had finally come home. It wasn’t long before the possibility of ministry started percolating again.
After my son was born, I talked to my pastor about ministry. He suggested a couple of schools I could attend. None of them were in Utah. One of them, Eastern Mennonite Seminary in Harrisonburg, Virginia, had a website that really caught my attention. I thought, “I wish I’d written that! I want to be with these people!”
I talked about it to my wife. She was raised in western Colorado and southern Utah and had never lived anywhere outside the high desert. She said, “Virginia? Are you crazy?”
So I contemplated. I looked at some other schools. They were schools. None of them appealed to me like EMS.
Last fall, a year out of the cheese business with no alternative plans on the horizon, I told my wife that we really needed to revisit the EMS question again. I suggested a trip to see what it was like.
To my surprise, she agreed.
To my even greater surprise, she loved Virginia.
Events moved quickly after that. I applied to EMU, was accepted, and we found a place to rent. May 1, we closed up a 26-foot U-Haul and set off across the country.
I learned to manage my depression without the use of medication. Meditation, therapy, twelve step meetings, and volunteer work helped keep me balanced. I put my life back together, remarried, moved from Los Angeles to rural Utah, and began making cheese. There were periods of depression, and I tried low doses of a few antidepressants, but found that they rarely helped and often made things worse. I also learned that psychiatrists don’t listen well, and they don’t understand drug addicts. One told me that I just needed to be addicted to Valium and my depression problems would be over. Another decided I had ADD and wanted to treat me with Ritalin, a drug I had abused extensively before I got sober.
In general, I managed to get my depressive periods without taking the medications that made it worse.
Last year, a series of events unfolded that changed all that. After my son was born in May, my wife struggled for several weeks with postpartum psychosis. It was a traumatic few weeks in which I wasn’t sure at times if I would be raising my child as a single parent in his fifties. As she recovered, the aftermath left me prone to depression. Then I got bronchitis. A seemingly-benign medication to help clear my lungs interacted badly with my triglyceride medication– a reaction for which there was a warning on the drug information sheet and the FDA website, but which was not in the pharmacist database. Within weeks, I became suicidal. I called for help, and was told to go to the ER. There, they found me a bed at a mental hospital in Provo. It was a very good hospital, I have to say. But my experience that psychiatrists don’t listen well was once again confirmed. They put me on an anti-depressant. I told them of my experience on Prozac twenty years earlier, and they assured me that this one was different.
It wasn’t. Within two weeks of returning home, I began to lose my mind. First, I lost my ability to feel emotions. I couldn’t feel sadness or joy, or even love for my family. I faked it for a couple of days, but it was quickly apparent to my wife that something had changed. Then my reasoning began to falter. What seemed obvious to me made no sense to anyone else. Finally, I began hallucinating.
It is unsafe to stop a therapeutic dose of antidepressants abruptly. You’re supposed to taper off. But my condition was so severe that my doctors recommended I stop immediately, that the risk of the progressing psychosis outweighed the risk of stopping the medication cold turkey.
What followed was a month of absolute hell. I realized most of the time that I couldn’t rely on my perceptions, nor could I rely on my reasoning to make even basic decisions. I could converse about things I knew about, like hobbies, but couldn’t make new thoughts happen. I couldn’t follow complex sentences in conversation. I told my wife she wasn’t allowed to use sentences that required commas. My head hurt most of the time. And it wasn’t getting better.
Finally, I couldn’t take it anymore. I was suicidal, but not the variety where I wanted to put a gun in my mouth. Instead, I decided to take all the emergency cash and three changes of clothes and head for North Las Vegas to get loaded. I didn’t know anyone there, but I was sure I could find the people who had the drugs I wanted. It would have been a one-way trip. I figured I’d be dead in a week.
That’s when God intervened. First, my wife realized what I was about to do and called 9-1-1. Then two sheriffs deputies showed up and treated me as the potential suicide that I was. Seriously, can you imagine LAPD taking seriously a hysterical woman who called in and said her husband was on his way to get loaded? Thank God for the Iron County Sheriff!
They took me to the hospital, and I got sent to the mental health unit in St. George. There, they diagnosed me as bipolar and gave me new meds. In three days, I became so agitated and angry that I almost got in a fist fight with one of the male nurses. My shrink said I was improving.
Up to that point, I’d been planning to jump through all their hoops, and then continue with my plan to use drugs until I died. But on the third day, I realized that if I didn’t get out of there, I was going to end up in a dark room in a straight jacket for the rest of my miserable life.
I called my wife and begged her to find somewhere for me to go. She found only one facility west of the Mississippi that was willing to take me without administering medication. It was in Culver City, CA. Two days later, I was on a plane to a thirty-day inpatient program, where they helped me get my shattered mind back together.
When I got out, it took me a while to readjust to “real life.” But I did. It’s now a year later, and with the help if intensive therapy and weekly DBT (Dialectal Behavioral Therapy) I have returned to a reasonably normal life.
I thank God for the events that saved me from the conventional mental health system and its effects. It may work for some people, but it nearly killed me. I am acutely aware of how broken our system is. Medication is not the answer to all mental illness, and perhaps not even most mental illness. My DBT facilitator’s slogan is, “Skills, not pills.” And for that I am forever grateful.
I am mentally ill. I struggle with depression and anxiety. I have been hospitalized twice for psychosis. Yet I am able to live a fairly normal life. I am not a danger to myself or others.
I also rarely talk about my struggles. My bio-family only hears about the crises, not the daily struggles. My friends don’t hear much more. I remember trying to explain my depression to a friend, who replied that he just couldn’t understand. “I have bad days,” he said, “but I don’t understand having bad months or bad years!”
This seems to be the way most people with mental illness live. We don’t talk about it. It’s taboo. It scares people. And the more we don’t talk about it, the more isolated and misunderstood we feel. When a mentally-ill person shoots up a school, some folks lump all mental illness together and we become potential criminals.
It’s time to break the silence. When one in four Americans suffers from some form of mental illness in any given year, that’s too many people to have it misunderstood.
I hope you don’t find my confession in bad taste, but if you do, maybe that’s the point.
The Daily Druid interviewed me for their Thursday Interview. You can find it here. Hope you enjoy!
I don’t write much poetry. Last week, I learned that my mother may have Alzheimer’s, and I was inspired to write this.
I felt the breath of winter
cold on my neck this afternoon.
In the mirror I saw you
who bore me,
the flowers faded now,
the leaves turned and falling,
a wondrous year
now dying to a close.
There is light in the future,
new life to replace the old,
but this year will have passed
and what springs anew
will have never known you.
How dare the cruelness of time
erase the reality I’ve known?
How can the face that defined a life
pass into forgotten mists
and leave that life behind?
We’ve loved and fought,
you and I,
but now that winter’s breath approaches
I fear to contemplate the emptiness
Some 25% of Americans struggle with some variety of mental health issues. Only a small handful are driven to pick up a gun and kill people. Yet the struggle remains, often misunderstood and stigmatized. Too often, we struggle alone.
Here’s what I know about mental health: It’s better to have it than to not have it. Ask me how I know.
Mental health and I have had an on-again, off-again relationship over the years. As a child, I suffered from severe depression. At 15, I thought of suicide and made practice cuts on my wrist. I also snagged a quill pen from the art department and wrote a poem in blood. Clearly, I was a well-balanced individual ready for adulthood.
Fortunately, I learned to manage my depression through medication. Unfortunately, my meds were neither prescribed nor managed by a doctor. I started with pot, speed, and LSD. (The latter made things worse, but it was entertaining.) I graduated to alcohol, then cocaine and heroin, supplemented with anything else I could get. I figured I could live that way until I was about 20. All my heroes were dead poets and dead musicians, and I didn’t mind the idea of joining them.
By 25, I’d exhausted my options and was afraid I wasn’t going to die. Then I got sober, which is another story.
That’s where my struggles with mental health really began. The initial exhilaration at getting off drugs faded. Real life kicked in. My depression returned with a vengeance. Therapy didn’t seem to help. I was 32 when a psychiatrist put me on Prozac. The first week it didn’t do much. Then came two weeks of ecstasy. I realized that I hadn’t known how depressed I was because I had nothing to compare it to. I’d never been not depressed.
Prozac seemed too good to be true. And it was. As my dose increased, I became more and more anxious. One day I woke up paranoid, psychotic, and suicidal. No one knew what to do with me. The shrink wanted me to keep taking the Prozac. My GP wanted me to take Valium. My wife just wanted her husband back.
It took four months before someone decided I should be hospitalized. During that time, I wore a winter parka in the summer, rarely went out without a teddy bear, and had a secret hand signal for my wife in case the anxiety of a social situation pushed me close to melt-down. I don’t remember any of that; she told me about it years later.
I spent a month inpatient in a mental health facility. But it took over a year for me to begin to really function again. In the mean time, I lost my home, my marriage, and my business.
That’s how I learned that psych meds were not an option for me. Instead, I had to manage my depression and anxiety by other means. Meditation replaced medication. Volunteer work gave me a sense of purpose I’d never had.
I continued to struggle from time to time, but that first experience of losing my mind to psychosis motivated me to try to live differently.
Danny had seen a run of bad luck lately. Two years ago, he’d been gainfully employed, with an apartment and a decent car. Yeah, he had a little drug problem, but he paid his dealer in cash with the money he earned from his job. He’d never hurt anyone, never robbed or stolen. He just liked to get high after work. Then he’d gotten a DUI one night on the way home from a bar. They had to be kidding! He’d only stopped in for a couple of drinks, get a little loose, try to pick up on a chick. He hadn’t even done any drugs! But the cops claimed he’d failed the field sobriety test. Hell, he couldn’t walk a straight line dead sober. Then he’d blown a .24 on the breathalyzer, well over the legal limit of .08. So not only had he struck out with the woman, he’d gone to jail instead of home to bed. That had been a Friday night. By the time he’d been arraigned on Tuesday he’d lost two days pay and his job. Then, just like dominoes, one thing after another had fallen away.
My second book, Domino Theory, began as something else. In 1980, I began my first novel, a murder mystery featuring Danny McCabe, a drug addict who’d been clean and sober a few years. Danny gets called for jury duty, and inadvertently gets involved with trying to clear the defendant, a drug addict who’s been framed. That book is as yet unfinished, though I hope to finish it this year.
I started Domino Theory around 1990. As usual, it began with a question: “What would happen if I was drunk and woke up next to a murder victim?” The result was a mystery about a guy who’s been framed. He has to dodge the cops and two hit men while finding out who set him up.
I originally planned for the main character to be the defendant from the first Danny McCabe book. Over the next eight years, I got it plotted and about three quarters written. Then I stopped. After all, how can you publish a sequel to a book that isn’t finished?
Domino Theory languished for ten years. I wasn’t very motivated to work on it because I wasn’t having much luck in the publishing department.
Then came Ordinary World, which sold over 3,000 copies and got great reviews. That modest success encouraged me to look at my unfinished novels with new eyes. I thought Domino Theory had a great plot, but it was missing something. Then it occurred to me to make it the prequel to my Dannny McCabe story. After all, Danny is a recovering addict. Why not tell the story of how he got into recovery?
As I began my rewrite, I was strongly influenced by Lawrence Block’s A Ticket to the Boneyard, which I consider the best of the (generally excellent) Matt Scudder series. It portrays Scudder trying to get sober while facing a brutal opponent. Despite his need to stay off the booze, Scudder gets drunk again several times. As a recovering alcoholic and addict, I’ve always though Block portrays Scudder’s struggle well.
I wanted Domino Theory to convey the reality of the insanity a drug addict lives with in his addiction, the constant need, and the ridiculous justifications he believes. The scenes where Danny struggles with his addiction are as real as I can make them, based on my own ten-year experience.
The misery isn’t as bad now as it was when I kicked. I’ve been off the sh*t for three weeks. Well, almost three weeks. Two and a half, anyway. My body doesn’t ache any more. I’m starting to be able to sleep at night, if I drink enough. Yeah, I drink more, but I’m off the dope. I’m clean, and that’s something to be proud of. So what am I doing with a bag full of dope in my room? I don’t want to use it. Really, I don’t. It was too hard to get off of it. But the sh*t is calling to me. That goddamn heroin is calling my name. I drain the third Moosehead and reach for the fourth. Two thirds gone now. I’m pretty drunk, but not drunk enough to ignore the dope calling me. I suck down half the bottle in one swallow. Damn it, I hate that sh*t! F***ing heroin. For months I couldn’t not do it. Now I’m clean, and it still wants me back. It’s like an evil woman that won’t let go of me, and I can’t say no. That’s the thing: I know I can’t say no. I always go back to it. I always have, and I always will. Yeah, I’m clean right now, but that’s temporary. I know it. You know it. The dope knows it. It’s calling my name; it knows that sooner or later I’m going to give in.
I don’t know if anyone who hasn’t been there can really understand what goes on in the mind of an addict. I know some whose friends and loved ones are addicts have stopped trying, and I don’t blame them. Our actions are as incomprehensible as they are heartbreaking.
Domino Theory is an attempt to bridge that gap, while telling what I hope is an entertaining story. Danny has no clue who framed him or why. He knows he he has to get off the drugs to have any chance of staying alive. With the help of some new friends in AA, he begins to unravel the mystery. He stakes out drug dealers, tracks a mysterious woman to her home, and identifies several of the people involved. But who is the mastermind blaming Danny for a string of murdered dealers, and can Danny stay clean long enough to find him before the hit men or the cops catch up with him?
If the internal dialog is too raw, if you can’t understand how anyone could be so crazy, at least take this from your reading experience: People like Danny and me, crazy as we are, do find recovery. I’ve been clean and sober more than thirty years! Domino Theory is a mystery, and a look deep into the frightening mind of an addict. But it’s also a story of hope.
AA, Danny thought, not for the first time, really didn’t apply to him. He might as well go out and get loaded, because AA wasn’t going to work. What the heck? He had plenty of dope. He could hole up in a motel and stay stoned until they found him. With enough heroin in his system, he wouldn’t even feel the bullet that killed him. “F***ing AA,” he muttered. “It’s for pussies, not for people with real problems.” He took a last hit off his cig and ground the butt into the pavement with his shoe. Then he remembered the guy from Newark who had stolen money from the mob and had to make amends for it. And the girl, Jamie, who had come to puking her guts out on the floor of a jail cell. “Okay,” he acknowledged. “They had problems. So maybe AA does work. But what am I supposed to do?” The answer came. It was in Alicia’s voice, almost like she was there in his head responding to his question. “That’s freaky,” Danny said. Because what the voice told him to do was pick up the phone and call someone in AA and ask them what he should do.