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An Honest Conversation about Mental Illness

City Club of Portland presents Friday Forum: RAW – An Honest Conversation about Mental Illness with Sheila Hamilton, Storm Large, and Dr. Chris Farentinos.

Join Sheila Hamilton (pictured), News Director and Co-host of the morning news program at KINK-FM who recently authored a book, All the Things We Never Knew, and Storm Large, singer and author of the book, Crazy Enough, as they discuss the trauma of a family member’s mental illness with Dr. Chris Farentinos, Director of Behavioral Health at Legacy Health and spokesperson for the Unity Center for Behavioral Health – a forthcoming collaboration of Legacy, Adventist, OHSU and Kaiser. Join us as we dive in, look up and look ahead … envisioning a place where people suffering from mental illness, and their families, are treated as compassionately, holistically and empathetically as people suffering from heart disease, a broken bone or cancer. How can we get there?

Storm Large’s one woman show and award winning memoir, Crazy Enough echoes the familiar sadness and survival in Sheila Hamilton’s brilliant new release. The topic of mental illness is finally being discussed more openly, connecting a huge, lonely part of our society with other survivors, as well as people and organizations who can further help them.

Dr. Chris Farentinos
After serving as Chief Operating Officer for De Paul Treatment Centers, Dr. Chris Farentinos became Director for Behavioral Health Services for Legacy Health, a not-for-profit health system with six hospitals and more than 50 clinics in Portland and Southwest WA. Dr. Farentinos is a leading advocate behind Unity Center for Behavioral Health, a collaboration between Legacy, Adventist, OHSU and Kaiser to consolidate current psychiatric units and to create a 24/7 psychiatric emergency service located in Portland. Unity is set to open in late 2016

I want to challenge you to answer honestly

An excerpt from Sheila’s article published on Huffington Post:

I want to challenge you to answer honestly when I say these two words: Mentally ill. What was the image you created in your mind? Was it a homeless person shuffling down the street? Was it a person in a straitjacket? Someone rocking back and forth? Continue reading on Huffington Post →

‘What Should We Have Known?’

A conversation with FOX News Health host, Dr. Manny Alvarez.

Mental illness, unlike breast cancer, isn’t celebrated with big marches or pink ribbons. The stigma is stifling and it prevents most people from seeking help. David, my husband, refused to accept the label of bipolar disorder. He could not imagine a life of medications and therapy, which did so little to help. David’s path is not unique. Suicide is now the ninth most common cause of death for men and women in America. Every thirteen minutes, another American dies from suicide.

What could we have done differently?

What should we have known?

It is my belief that many people could benefit from hearing more about how psychiatric conditions unfold. In the years, months and days leading up to David’s death, I didn’t classify him as mentally ill. I missed many signs. I ignored others, believing it could get better. And I scrambled, as the world came crashing down around us, I scrambled to maintain my own sanity and the health of our daughter.

Our daughter celebrates her birthday each June. I can’t help but measure her birthdays with an equal sense of apprehension and elation. She’s a teenager now, and still no sign of the brooding, the polarity, the darkness that descended on David like Portland’s thick gray clouds in January, refusing to budge. Yes, she has his intellect but she also has my relatively sunny nature. She is physically stunning with long, muscular legs and a waist that defies her voracious appetite. She has David’s European cheekbones. The color of her skin is his. Her ears have the same shape. There are times I find myself staring at one of her features for too long. She bats me away, “Mom, enough.”

After David’s death, I’d read every book I could get my hands on about bipolar disorder. I’d measured the likelihood of a genetic inheritance against the things I could influence– her diet, her sleep, exercise, a sense of well-being and unconditional love. She is just fine, so far. Becoming aware of our family’s genetic vulnerabilities was painful, but it provided a unique gateway to also focus on our genetic strengths, and Sophie has inherited a majority of the good stuff. She’s attending college now with the sensitivity, compassion and intellect of a person who will be better than “just fine.”

I want everyone to know about the signs and symptoms that I missed with David. The anxiety, confusion, disorganization, trouble completing tasks and how withdrawn he became. My interest is in preventing another loss of life as exquisite as David’s. I welcome your emails, your stories, and hopefully, your support. Connect with me and sign up for my newsletter. I’d be so grateful if you did.

What is the most important factor in treating mental illness? Competence.

It’s been nine years this week since my late husband David died by suicide. Everything about this time of year releases a cascade of emotion that is unbearable, the softening of the light, the gold and amber in the leaves, the heat during the day dissipating to cold nights. There is a vivid memory of David’s state of mind, a cold, agitated horror at his state of being. Even breathing seemed to be an effort that exhausted him.

At a time when we needed the very best care we could get, we experienced a system that retraumatized David to the point of hopelessness. An initial misdiagnosis, a prescription that pushed David over into a state of akathisia and suicidality, a lockup care center whose contracted doctors made money– not by helping people– but by admitting as many patients as they could squeeze into a bland and hopeless enclosure. We knew it was oppressive when we were in it, but, in insight, it was also a shameful failure of care.

Currently, there is no standard of education for a diagnosis. Many people treat depression, including family practitioners and social workers, and the varying degree of competence is maddening for families who are desperate for quality care. Families seeking help find professional camps divided between psychopharmacology and psychotherapy. And often, medications compound the suffering. Caught in the middle, patients are dying.

This year marks the tenth consecutive year our nation’s suicide rate has increased while outcomes for heart disease, diabetes, and cancer are improving. Half of those who died by suicide were under the care of a general practitioner. One-third of those who died by suicide were under the care of a psychiatrist. As one doctor told me, “It’s time to put the head back on the body.”

We demand excellent outcomes for every other major disease. We track success rates for heart surgeons. We compare and contrast survival rates for cancers. Why has the treatment of mental illness in our country been so lacking that many inpatient psychiatric centers don’t even bother tracking the outcome of their patients? David’s doctors didn’t realize he’d killed himself just one day after his release!

We could be saving lives by coordinating patient care- sharing essential treatment information, scheduling and tracking referrals, and providing proper follow-up care. With today’s technological advances, a fully coordinated system of care is possible, and is even being practices in some parts of the country with very good outcomes.

I’m just one survivor. But for every death by suicide, the National Institute for Mental Health suggests eight people are profoundly affected. Last year, 41,000 Americans died by suicide. The toll of grief, confusion and chaos impacts hundreds and thousands of people every year.

What is the most important factor in treating mental illness? Competence. We should demand it.

JPepin Art Gallery. A place for beautiful minds

The most beautiful thing we can experience is the mysterious. It is the source of all true art and science.” ~Albert Einstein

Why are activities with music, movement, drama, and art so successful with people suffering from mental illness? Through activities with the arts, artists can give meaning to thoughts and feelings that might otherwise be difficult to communicate. The exciting developments in brain imaging and neurobiology now demonstrate how art, music, movement and storytelling strengthen the synapses between brain cells.

Dr. Bruce Perry (and the Civitas Healing Arts project) has found the amazing healing effect of the arts on the youngest children impacted by trauma. CIVITAS research has shown that specific parts of the brain are stimulated by specific artistic enrichment modalities. For example: the base or brain stem responds to touch; the midbrain to music-making and movement; the limbic region to dance, art, play therapy, and nature discovery; and the cortical region to art, storytelling, drama, and writing. Through artistic stimulation, children’s brains are healing and growing!

Jennifer Pepin, a beautiful young Portlander, is showcasing the work of people who are living with brain based behavioral disorders. Art has been a powerful outlet for Jennifer, her boyfriend and a community of artists who create spectacular work. Check out the images below:

Dave Dahl of Dave’s Killer Bread on mental illness

Dave DahlI have always admired the redemptive story of Dave Dahl, a former convict who turned his life around by making the killer recipe called “Blues Bread,” that revolutionized the bread industry. Dahl became the face of Dave’s Killer Bread, and helped turn a family baking industry into a multi-million dollar brand. Dave’s Killer Bread is the nation’s favorite organic sliced bread.

In November of 2013, Dahl’s fate turned during a widely publicized incident with Washington County police. Many people reported he was drunk or high. In fact, Dahl was experiencing his first psychotic episode, a terrifying experience he recounts in this interview.

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.