Unreachable

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My father’s parents both died before he turned ten years old. He essentially grew up as an orphan, and yet he was the happiest person I’ve ever known. At the age of seventy-nine, he simply refused to believe that the cancer eating away at his jaw would ever claim him. “A bump in the road” was the way he softly described the recurrence of his illness to me on the phone.

Five days before his death, he got out of his hospice bed, wobbling as he put on his pants, and announced that he needed to “go back to work.” I still believe he went to his death pissed off that he didn’t get one more day.

My former husband was raised by two of the most brilliant and charismatic parents I’ve ever known. They were movie-star gorgeous and equipped with languages and experiences I could only imagine. David traveled the world, ran a successful building company, and earned the most profound love of his life, our daughter. He skied, hunted, and fished. And he killed himself at the age of fifty-three.

What makes one person fight for every breath and another take his own life? Brain illness. There are a lot of theories about why people experience brain illnesses. In my time searching for answers, I’ve heard neurologists discuss disruptions in the brain while naturopaths point to an inflammation of the gut. I’ve seen behavioral therapists declare it is the result of a lack of meaningful relationships and a flawed, negative thought process. Psychiatrists talk about past traumas and a problem with chemical regulation.

I’m not a doctor, and I don’t pretend to know which of the disciplines will eventually be proven right, but I have a hunch. They are all right. As human beings, we are holistic beings. The interconnectivity of our genetics, our diet, our sleep patterns, and our past traumas create a delicate and sometimes disastrous dance. Everything I’ve read suggests resilience comes from a healthy lifestyle, meaningful relationships, experiences like yoga and mindfulness that draw you inward, and a dedicated perspective that allows you to believe things will get better.

My father’s body was racked with disease when he joked with me about who should control the remote. “From now on, I watch what I want,” he laughed. “I have cancer. You have to be nice to me.” When his oncologist flatly told him there had been a mistake on the tests and he’d better start putting his affairs in order, it was as if my father suddenly developed hearing loss. He refused to believe anyone was going to end his party.

David pulled away from us in the early stages of his brain illness and refused to share concerns about his lethargy, irritability, and confusion. He was, after all, a dignified man who rarely asked for help. When he was finally diagnosed with Bipolar II, it was as if his family, his work, and any semblance of a life that might have sustained him through his illness no longer mattered. He simply couldn’t bear the darkness that descended on his brain.

What mechanism allows one person to fight for every breath, even as their body is racked with a biological illness, and the other to end their life before they even get gray hair? I’d love to hear your thoughts.

“Look to the living, love them and hold on.” Douglas Dunn

Kevin Hines: Survivor

Kevin Hines

When 28-year-old Kevin Hines hurled himself from the Golden Gate Bridge, his first thought was, “What the hell did I just do? I don’t want to die.”

According to the New England Journal of Medicine, one-third to 80% of all suicide attempts are impulsive acts. Ninety percent of people who survive a suicide attempt do not end up killing themselves later. For many, the suicide attempt (a failed shooting or an overdose) may serve as a spiritual awakening.

Kevin Hines jumped from the bridge in 2000 after pacing for a half hour while people ignored him. Like many other suicidal patients, he employed an irrational and confusing logic — “If someone, anyone shows me they care, I won’t jump.” A tourist saw him, tears streaming down his face, and asked if he would take her picture. He snapped the photo. And then he jumped.

Listen to this incredible conversation of a life transformed. Kevin now believes life is the single greatest gift we are given. He is one of America’s most coveted mental health advocates, a popular speaker and author.

Recovery is possible.

brainThe one thing I wish more families heard when their loved one gets sick from a brain illness is this: Recovery is possible.

In the days after David’s suicide attempt, I learned about the stubborn reliance on psychotropic drugs as the main solution for people in mental health crisis and I witnessed the shocking limitations of an overtaxed and impersonal system. I was so grateful just to get a psychiatric bed for David. He’d lingered in the system for a few days after his suicide attempt, but many patients wait weeks for a bed — we were lucky, or so I thought.

The receptionist gave me directions to the psychiatric center. It took up one wing of the hospital. A social worker had prepared me on the phone for what I’d encounter once I got to the facility. A small box on the wall with a button. You push it and the people inside look at you through a camera to determine if you are safe. Two sets of heavily locked doors open. Then you surrender your purse, your shoes, and your belt. Only then can you see the patient.

The communal room was bare of windows, no pictures, no art anywhere. (Glass is considered dangerous.) Four tables were set up on one side of the room leading to a kitchen. There were small seating areas for families to visit, the kind of furniture you see in group homes that haven’t been updated in a decade.

The muted, bland colors on the couches would make anyone depressed.  One man shuffled past, disoriented and mumbling. He took tiny steps, a couple of inches at a time, as if he were recovering from a stroke. The lighting was horrible, artificial, dim. The staffers sat behind heavy shatterproof glass laced with wire. They were completely walled off from the patients.

David led us to a furniture grouping, four chairs divided by a low table. His affect was flat, defeated. He told me hadn’t seen a doctor and didn’t expect to see his psychiatrist until the following week. I wondered what he would do in this bare and dismal place. He hated to sit still; it made him antsy and nervous. He was used to handling a dozen jobs, flying around in his truck, juggling two cell phones and the demands of clients. Hospitals are always boring, but this was even more so. There were no books or magazines, and no recreation room. There appeared to be nothing for him to do here. This place looked like One Flew Over the Cuckoo’s Nest, only smaller.

“Is that for the kids?” I asked, noticing a table in the corner set up with crayons and coloring books.

“That’s for us.” He raised his eyebrows. “They invited me to color this afternoon.”

Tears filled my eyes. I remembered my friend Claudine telling me once how she’d never asked a question David didn’t know the answer to. Whether it was politics or religion or history or mathematical theory, David was a walking encyclopedia. Full of stories. Full of life.

His psychiatrist was a brisk, no-nonsense woman who never made eye contact with David. When one drug made him so catatonic he couldn’t move, she simply administered another drug to correct his seemingly paralyzed and lifeless limbs. Her notes in David’s charts were unhopeful. “Patient not responding to X. Attempt Y.” The list of drugs attempted, doubled in dose, reduced, and then abandoned took up half a sheet of paper.

Medicines work wonders for many patients, but for others, there is often only partial relief and a number of unpleasant side effects. In David’s case, there was far too much emphasis on finding the right cocktail of drugs and far too little on helping him process the spiritual and emotional crisis he was suffering.

If I knew then what I know now, I would have worked with David’s family to find a gifted therapist, someone like Brian Goff.

Goff’s specialty is suicide. He’s seen more than 500 significantly suicidal patients. Goff says, “A large percentage of survivors I work with say they regret the choice of attempting suicide. Rarely have people actually wanted to die. They just didn’t want to live the way they were living.”

Goff has worked at the forefront of several therapies that offer promise for the most deeply troubled patients. Intensive therapies, such as dialectical behavior therapy (DBT) and cognitive behavioral therapy (CBT), have reduced rates of repetition of deliberate self-harm. Goff cofounded a DBT clinic and has used that technique successfully with hundreds and hundreds of patients. Now, he’s combined what he sees as the best elements of both in a treatment that uses mindfulness blended with cognitive behavioral psychotherapies.

Goff begins with this premise: people want to live a life worth living. And if they can be given the tools to help them ease the struggle of their present condition, they can begin building a life worth living. The new hybrid therapy,  acceptance and commitment therapy (ACT), focuses on modifying the functions rather than the forms of symptoms, using acceptance and mindfulness strategies.

Goff asks his patients a theoretical question that provides insight into the behavioral component of suicidal ideation: “If I had a magic wand and I could do something, anything, for you, would you say, ‘Please kill me’? In all the years I’ve asked it, I’ve never heard ‘Yes, please kill me,’” Goff says. “The answer is, ‘Cure my Parkinson’s.’ ‘End my depression.’ ‘Save my marriage.’ ‘Prevent my bankruptcy. I want to live, just not like this.’”

 

INVISIBLE

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My friend’s eight-year-old son punched a hole through the sheetrock of his new classroom two months ago. His parents had moved him from the elementary school he’d attended since kindergarten because he was eating his lunch alone or not eating at all. He refused to go on the family’s spring vacation and requested a home office instead so that he “could get his life organized.”

None of the behavior rang alarm bells–the son had always been extremely quiet and unusually bright. But, when the small fist of the shy kid went through the sheetrock, people started looking for answers. Inside the boy’s black journal, there were stick figures of ambulance workers loading a child into the back of a car. “I need to go to the hospital,” he told his mom.

My friend says she feels as if she can’t breathe correctly. It started when her son sat in the car outside school that day and told his mom he’d been coming up with ways to kill himself.

“I have several ideas,” he said, staring into his hands.

“Thank you for telling me,” she whispered back.

“I don’t want to die,” he said. “But, I can’t stop thinking about it.”

She tried to be calm on the drive to the emergency room. She was told there were ten children ahead of her son, all waiting for a psychiatric bed to open.  The administrator said the boy could be there all weekend and not be treated for his mental health condition.

“Can you imagine breaking your leg and being told you’ll need to wait a week to get care?” she asked. They sent the family home with a bottle of anti-depressants, but without a referral to a psychiatrist.

His tongue swells. His stomach churns. He wakes up in cold sweats at night, drenching the sheet. There is no one to call to see whether the side effects are normal or worrisome. Someone in the family must sleep with the boy at all times. Someone is always on duty; to follow him to the bathroom and wait while he showers.

They eat meals with plastic utensils.

There is only one thing I offer that seems to help: “The majority of young people experiencing their first psychotic episode will make a complete recovery.”* It’s a reference point my friend desperately needs to have repeated.

The trajectory of recovery is variable. It takes weeks to know if a certain drug is the right drug, or whether it is even working. There is the risk that anti-depressants may make some children more suicidal. Some people get better quite suddenly. Others relapse, and then gradually get better.

Accessing the mental health patchwork of services is  like running a corn maze blindfolded. There’s always another obstacle. You wish someone who was in charge could give you a map.  Her days and nights stretch into one another. For the first time in months, she heard her son playing his guitar and she cried. But there is silence from the outside world.

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*The National Institute of Mental Health reports that “unlike most disabling physical diseases, mental illness begins very early in life. Half of all lifetime cases begin by age 14; three-quarters have begun by age 24. Thus, mental disorders are the chronic diseases of the young. For example, anxiety disorders often begin in late childhood, mood disorders in late adolescence, and substance abuse in the early twenties.”

*A combination of funding cutbacks,  cuts in the Oregon Health Plan, rising health care costs and a decrease in the number of psychiatrists have all contributed to what has become a crisis-level shortage of beds for mental health patients in metropolitan Portland.