Bond of brothers

How schizophrenia has defined our relationship, for good and bad

Brothers: Craig and Ken.

Brothers: Craig and Ken.

Photo By kyle delmar

Author's note: My brother Craig's well-being was of utmost concern while putting together this article. Though it is deeply personal and revealing at times, I took care to assure Craig knew what I was doing and was comfortable with the content, conferring with him several times during the course of its writing.
Local mental health resources

NAMI Butte County
Phone: 228-7100

NAMI support group (for family members) meets first Tuesdays, 6:30 p.m., Congregational Church, 1190 E. First Ave.
NAMI general meeting, third Thursdays, 6:30 p.m., Butte County Library, Chico, 1108 Sherman Avenue. NAMI also offers Family-to-Family and Peer-to-Peer classes. Call for dates/info.

Butte County Behavioral Health
24/7 Crisis Lines: (800) 334-6622 or 891-2810
General information: 891-2850 health

Iversen Wellness and Recovery Center
260 Cohasset Road, Suite E
Open Monday-Friday 11 a.m.-4 p.m.

My brother Craig turns 50 at the end of this month. For his birthday, he’s very excitedly told me the last few mornings, he’d like a pair of moccasins to go with the Army uniform he got for Christmas. Craig is not a veteran or a Native American, though he sometimes starts speaking in a nonsensical language he says is Navajo and talks about what he did back in the war.

Which war? Pick one.

Craig beamed as he told me this, a face-wide grin accentuating deepening wrinkles surrounding smiling green eyes. He looks good for 50, just a dash of gray peppering his dark-brown hair, and only when he holds his face certain ways can you tell he has no teeth.

Those eyes aren’t always laughing. His eyes have seen terrible things, in this reality and others. But the holidays, extended this year by a landmark birthday, are usually good times, and nowadays we have more good days than bad.

Craig loves Christmas, so much so that he has a tattoo of a Christmas tree. And he especially loves Santa, a man he knows is very real, stopping to chat whenever he sees him in a mall or ringing a bell, about their shared time in the mental hospital. Santa ranks high in a whole pantheon of supernatural characters—JFK, Mickey Mouse, Jesus, an omnipotent being called The Craig, and others—that make up his rich personal mythology. His is not the blind faith practiced by most religious adherents around the world, because when he talks to them, they sometimes talk back.

I am Craig’s conservator and have been for 16 years—since I was 19 years old. I’ve been taught to consider what’s best for Craig much longer than that. It’s unfair to say I’ve always taken care of him. We’ve always taken care of each other.

Craig (right) with his brother Corey and sister Kim circa 1965.

Photo courtesy of Ken Smith

Craig is paranoid schizophrenic. Schizophrenia is a chronic, severe and disabling brain disease affecting roughly 1 percent of the population, about 2 million Americans. Symptoms include delusions, hallucinations, bizarre behavior, disorganized speech and lack of motivation or interest.

Schizophrenia affects different people in different ways. Some schizophrenics lead normal lives with or without the help of medication, but Craig’s diagnosis is relatively severe. He sees and hears things. He obsesses over situations that don’t exist to the outside world, though they’re very real to him. He constantly lives in two worlds, and needs a little extra help getting by in this one. With the invaluable help of my girlfriend, Kate, and some support from my siblings, we make sure he’s clean, fed, clothed, warm and happy as best as we can. I oversee his mental and physical health care, and try to calm him when he’s upset, cheer him up when he’s down, and keep him on an even keel as much as possible.

I wouldn’t let him get the Christmas-tree tattoo for a long time, mostly because I was scared. People look at him oddly enough, I figured, and the tat certainly wouldn’t help. I also feared the pain might be more than he imagined, and he’d end up with just a treetop star and the upper boughs. The thought of Craig in pain kills me. But Craig’s capable of many more things than I sometimes remember, or realize. He surprises me all the time. And tattoo pain is nominal. He’s endured much worse.

I also have to check myself. I have tattoos; why can’t he? He’s my older brother and, though disabled, he’s also an adult with rights to make decisions about his body. A tattoo, though, is neither here nor there, just an example of much more important decisions I’m sometimes asked to make, ones that affect him a great deal more than a little ink under the skin.

It’s a full-time job some people have compared to caring for a child without the joy of seeing that child grow up and develop. It’s an apt analogy, but not entirely correct; sure, it’s tough, but there’s been an abundance of joy in sharing so much of my life with Craig.

We were broke when we moved from Shasta Lake City to San Diego in 1999. We filled up for the last leg somewhere this side of the Grapevine and divvied our last $9 among three people, with me advising everybody to find the most nutritious thing they could at the lone gas station off Interstate 5. Craig got a quart of chocolate milk and a candy bar that were gone before we got back on the freeway, though he saved enough in the bottom of the carton to pour all over a fire he started in the backseat a while later. I got a sandwich and thought I was pretty smart until I opened it and found a gray piece of ham covered in brown shredded lettuce and Miracle Whip. Exasperated and hungry, but not that hungry, I tossed it out the window.

A few minutes later, my friend in the passenger seat looked back and asked what Craig was eating. To my horror, it was a sandwich. “Oh no, Craig don’t …” I started.

Like a dog with a bone, he growled a warning: “It came in through the window, Kenny.”

With the wind in his hair and music blaring, he hadn’t been aware of the fact I’d bought and tossed a sandwich. All he knew was that he was hungry, probably daydreaming of something delicious like a big sandwich, when one flew out of nowhere and landed in his lap. It was a divine sandwich, like manna from heaven, and there was no way in hell he was giving it up. Miracles are commonplace in Craig’s world.

Craig in front of his mom’s truck circa 1987. The truck was green until the day Craig found a can of white house paint and a brush in the basement. It was pretty shocking (and embarrassing to be dropped off to school in), but the creative outlet—he kept adding to it until he got his own project car—had a positive effect on Craig’s mental health.

Photo courtesy of Ken Smith

Craig has not always been this way. As a child, he struggled with learning disabilities and took special classes, but was mostly normal. He was an all-star Little League pitcher—a southpaw—and a Boy Scout. He raised a pig for 4-H named Arnelda, sang in a church choir and learned to play a few chords on an acoustic guitar. He got his driver’s license at 16 and bought a red Chevy Luv pickup truck that he kept impeccably clean and polished. He played and fought with his brothers and sister, doted over “the baby”—me—and had a few close friends. He liked pretty girls and dated, worked, dug Queen and Alice Cooper, started smoking cigarettes too young and loved the beach.

I best remember the story of when Craig “got sick”—our euphemism for the onset of his schizophrenia—the way my mom told it. My family was in a great state of flux, my parents not long divorced, leaving my mom a single mother to five kids—myself a toddler. She worked graveyard shifts as a nurse so we could eke by. Our oldest brother, Corey (Craig is second in birth rank), got married, had a kid and was moving to Arizona. Kim was also soon to marry and have a child.

Craig, mom said, felt a tremendous responsibility, at the age of 16, to become the “man of the house.” He dropped out of 10th grade to work full time, doing construction for a friend of the family. He was under a lot of pressure, some resulting from life’s travails and some an effect of his caring nature. And it was at this time Craig had his breakdown.

He was working in San Bernardino—we lived in Fallbrook—when my mom got a phone call from his boss saying there was something wrong. Craig had been acting strangely, and then disappeared.

It hurts to think how painful it was for my mom to tell the story, to recount an event not dissimilar to the death of a child. He was missing for a few days, wandering alone and scared and confused, before he appeared at the front door, his clothes tattered and dirty, his feet bare and bleeding from walking most or all of the 60-plus miles home.

“Mom, I’m sick,” he said, and collapsed. He slept for two days straight and, when he woke up, nothing was the same again. There were men with guns at the bottom of the hill, he said, and he wouldn’t let us leave the house. They wanted to kill us all, they wanted to kill the baby, he insisted. For the next several months, he’d sometimes scream violently one second, cry uncontrollably the next, and fight with terrible, tormenting things that weren’t there. Sometimes, he’d seem completely normal, but these respites were fleeting and ever fewer. My mother’s little boy, her fun-loving teenager, her capable young man and my brother, was changed forever.

My sister Kim remembers Craig’s behavior growing more erratic as his condition worsened. He had always been a little odd, and having no point of reference for what was happening, she initially thought he was having a short-lived episode, or even playing it up to some degree. “I remember when I realized he was really out there,” she said. “It was a hot summer day and there were flies in the house. We were all sitting in the living room and he was batting at the flies. He said, quietly and completely to himself, ‘God damn flies … I wish I’d never invented these God damn things in the first place!’ I laughed, and then it dawned on me he was dead serious.”

I was very young when this all happened. To me, Craig has always been the way he is. He’s always been my big brother.

Craig (right) with his mom, Jean Hart, and the young author at a McDonald’s on Craig’s 23rd birthday, Jan. 30, 1985, toward the end of his long hospitalization. All he asked for was a Big Mac, so they let him out of the hospital for a few hours.

Photo courtesy of Ken Smith

I have one very vivid memory from the time of his onset. I wanted someone to watch me swim, and no one but Craig would bite. He cleaned the kiddie pool and filled it with a hose, ran an extension cord out to a radio, tied his long hair back into a ponytail, put on sunglasses and lay back in the pool to tan himself. I tied my own miniature mop of hair back and mimicked his every move. Craig was the coolest.

Shortly after Craig’s birthday comes a more somber anniversary. Feb. 7, 1996, remains the saddest day in our shared lives. It was the day our mother died of breast cancer.

I remember more awful details of that day than I care to, one a strange thought I had as I held her hand and she slipped slowly away: Watching her take her last breath will be the second most awful thing I have to do today, I thought. My brothers Corey and Chris and my sister Kim were there, but we’d decided it was best for Craig not to be there. When the moment came I rushed blind from the hospital and found a private spot to freak out, as I assume we all did, before reconvening on the hospital steps in a daze. No one spoke for several minutes. “How are we going to tell Craig?” someone finally asked.

When we did tell him a few hours later, Craig’s legs gave out and we had to literally catch him from falling. For days after, he couldn’t speak comprehensibly.

Craig and my mom were very close, and she had done her absolute best to care for him his whole life. When everyone in the world thought he needed to be hospitalized full-time, my mom fought tooth-and-nail, and did everything within her power, to make sure that didn’t happen.

My mother had awful experiences with the state mental-health system while living in the Redding area, and did her best to keep Craig out of it as much as possible, and out of hospitals. In those days, and until the past decade, he was prone to violent behavior and in a near-constant agitated state. For a time she lost the battle; doctors declared him a ward of the state and transferred him to a state mental hospital. He remained there for several years, my mom maintaining a constant court battle to bring him home.

I remember visiting Craig several times there. He was usually in wards with the worst patients, where they wouldn’t let me in, so I’d sit in the courtyard and listen to their tortured screams, screams that gave me nightmares then and chills to remember now. Craig has said, and we have no reason to doubt it, that he was abused by staff members in several hospitals. Mental-health professionals to this day have sensed it and asked about it, and confirmed it’s not surprising considering the state of mental-health care in the ’70s and ’80s, when some aspects of so-called treatment—over-medication, unnecessary restraint, even violence and intimidation—were indistinguishable from abuse.

Craig’s long-term hospitalization ended in 1987. He was worse than when he went in three years earlier. My mom had to quit working to take care of Craig and me full time.

Craig at One-Mile, one of his favorite hangouts.

Photo by Kyle Delmar

Craig was locked into substandard medical care available to Medi-Cal patients. No doctors suggested a change from the super-sized dosages of the tranquilizer Thorazine and other medications that cost him his teeth and have caused indeterminable other damage to his body. None offered a better solution than doping him up until he wasn’t a “threat.”

My mom did her best to the end, and after. She raised us to carry on, to be independent and know how to survive. She raised us to take care of each other. She never lost sight of her vision of a better life for Craig, and for all of us, a peace of mind, a life without fear and strife.

A few days after she passed, my siblings and I sat around her kitchen table to figure out what to do next. “I’ll take Craig,” I volunteered. Everyone else had families and careers of their own, and it seemed a bad idea to move Craig from our mother’s house just then. Furthermore, I had a unique bond and rapport with Craig.

It hasn’t been easy, but it’s a decision I’ll never regret.

I have an old, worn cassette tape dating to 1983, when Craig’s condition was a lot worse. On the tape, for 60 minutes straight, he screams and rants his way through an odd telling of the Garden of Eden story, stopping only to cackle maniacally for minutes on end. The voice is barely his own at times, almost demonic-sounding. I remember recording it, sitting on the floor near my mom’s feet surrounded by walls pockmarked by Craig’s fists.

A few minutes into the tape, my mom is heard softly praying as Craig spews a diatribe about people blaming the devil for their own sins. He stops sounding so awful for a moment, allows a perfect two-beat comic pause and says, “Damn! I’m beginning to feel sorry for that devil!”

The next voice is a 7-year-old me: “Mom, why are you laughing?”

It’s a habit we’ve all inherited, my family, a dark humor, a survival device, a gift of sorts, to laugh at times or situations other people see only as awful, to find a glint of something whimsical in the darkest of moments. “If you don’t laugh sometimes, then you’ll cry all the time,” Mom used to say.

Other times I’d find her sitting alone, sobbing, even when, and especially if, things were going well.

The other voice on the tape is hers. It is as striking in its steadiness as Craig’s is in its chaos. As out-of-control as he is, she never wavers, knows exactly when to speak and when to stay silent. She never shows anger, or fear, or frustration; only patience. Her voice is calm, clear and, when necessary, assertive. It’s also always tinged with something else that’s hard to describe: an unknowable weariness, an ineffable sadness.

By the time of her passing, my mom had lived to see a marked improvement in Craig’s condition. I only wish she could see him today.

In 1999, after our first few tumultuous years together on our own, we moved south to be closer to family and so I could transfer to San Diego State University. Chris, who has always helped financially, took Craig while I was a full-time student, though I still oversaw his care. Then, we shared the responsibility half-time, Craig spending every other week with each of us, an arrangement we maintained until we moved to Chico in August 2009. Now, with the exception of a couple of months a year spent at Chris’, we live together full-time.

In San Diego, I found a good doctor. He was disgusted by the pills Craig’s old doctors had kept him on, and immediately began trying newer medicines. He was confident Craig could enjoy life more, be more aware, communicate better, his mood swings and delusions rendered less volatile. His positive prognosis for Craig’s future instilled us with new hope and vindicated our mother’s memory. He told us what no doctor had ever told her: He believed things could, and would, be better.

An ongoing parade of other doctors—some helpful, some not, most well-intentioned—have come and gone since finding the good doc, but the improvement has generally continued. I think back to five years ago, then 10, 20 and 30 years ago, and can hardly believe just how different things are.

My girlfriend, Kate, has been a tremendous help the last several years, and her patience and caring inspire me. Craig’s presence in my life greatly affects the relationships I have with other people, and I’m thankful for her willingness to understand, accept and adapt to the situation. She helps me keep my eye toward the future, helping seek new resources and ways to improve our individual and shared experiences.

One thing she found was the National Alliance on Mental Illness’s Family-to-Family classes. A 12-week course taught by family members of individuals with mental illness, the course helps educate attendees about various afflictions, treatments, conservatorship issues, and much more. Furthermore, it’s a support group that brings people dealing with similar issues together. Though I was the youngest in a class populated mostly by middle-aged parents of adolescents and 20-somethings suffering through the onset of illness, I found myself among people who understood things about our lives no one else ever could. I also found that my own story and experiences were valuable to other people.

NAMI is a grassroots organization that encourages caregivers and family members of the severely mentally ill to stand up, to advocate for those we care for because no one else will. It encourages people to fight the stigma of mental illness and help spread awareness and understanding. There is also a general movement in mental-health care toward a more client-based model, making use of the real shared experiences of the mentally ill in order to better serve them, instead of the classic doctor-patient as expert-consumer model. It only makes sense: Who better to look to for insight into mental illness than the mentally ill, and those who live with it every day?

Nowadays, Craig giggles a lot, talks to himself, calls people by odd names and tells some pretty amazing stories. We have occasional rough spells, times when Craig struggles to hold it together, times when he’s scared or sad or frustrated, which manifest outwardly as anger or irritability. But long gone are the violent mood swings, the screaming, the constant threat of something going terribly wrong. We’ve established routines that I wouldn’t have believed possible in the not-so-distant past.

His favorite place in town is One-Mile Recreation Area, where he insists on going nearly every day of the summer and keeps insisting until it’s too cold and I persuade him to go elsewhere. The Iverson Center, an activity and resource center run by Butte County Behavioral Health, is another of his common destinations, a place he can go for a few hours a few days a week where I know he’s safe.

Our experiences with Butte County Behavioral Health have been mostly favorable. Craig’s been through four doctors there, but so it goes with public health services. Most doctors usually just ask him how he feels on a scale of one to 10, look over his blood-test results (necessary for the medications he takes), and refill his prescriptions, anyhow. Much more helpful and engaging are his visits with his clinician at Behavioral Health, Michael Traverso, MFT, who has an excellent relationship with Craig, has learned to read him well the past few years, and seems to genuinely care.

There’s a lot more to Craig’s story, to our shared story, worth telling, and certainly more to come in the future. Every day is interesting, some are challenging, some hilarious, some sad. Sometimes, even when the going is rough, I can’t help but laugh hysterically. Sometimes I cry, even when, and especially if, things are going well. It’s my mother’s legacy and I’m proud to bear it. I’ve inherited her laughter; I’ve inherited her tears.