~ Morning Zen Guest Blog Post - Rachel Kallem Whitman ~
“What exactly happened that brought you here today?” Dr. Vaswani asked from his large leather recliner, peering down at my mother and me swaying on our fraying wicker seats. Behind him was a wall-sized photograph of the Taj Mahal; plastered on the right hand corner next to a poorly pixelated column was a picture of a yellow rubber ducky. I would’ve sworn I was hallucinating. It was the strangest backdrop for a psychiatrist’s office, but my mother saw it too and was equally confused. Dr. Vaswani was the answer to our prayers; the primary prayer being an answer to the question, “why is Rachel crazy?” and the secondary prayer was that he could give us the cure. And even though I was hating every minute of this visit, sitting there riddled with self-loathing, embarrassment, and shame, I was glad the doctor had asked that question because I wanted to know too. I had done a lot of crazy things, especially since turning 17. Which was the one that tipped my parents concern? Was it the secret long walks I felt compelled to take in the middle of the night? The crooked cuts that appeared on my legs, so many now that they were difficult to hide? The fact I smoked weed once in awhile, sipped vodka occasionally, or took someone else’s prescription pill? Maybe it was my clandestine and bizarre attraction to Princess Diana, which had developed for unknown reasons? I crossed my fingers hoping I would not have to explain that last one.
“She thought she was on a TV show,” sighed my mom.
I will never forget that face. That look of worry and love all jumbled together too complexly that I could never distill one from the other ever again. The day I realized my mom would forever love me with worry in her eyes was the day I realized my TV show was officially going off the air.
Okay, so I launched my own TV show. No big deal. I grew up in a household that adored female talk show hosts. From Rosie O’Donnell, to Oprah Winfrey, to Ellen DeGeneres in later years. These strong, smart women had overcome adversity—they were pioneers of feminism on television, they were engaging and entertaining, they made people laugh and they were role models to all of us. It didn’t take a genius to realize that this was a path worth pursuing. Luckily, I was a genius so I decided to make it happen. I would start small but eventually change lives on prime time television.
“Dad, what kinds of peas are these?” I asked my father one night at dinner during a live taping.
“I don’t know. Green! I thought you liked peas?”
“I do but I need to know the brand.”
“Why do you need to know the brand?”
“Because if I don’t know, how will everyone else!?”
Uh oh. In that moment the “Rach, you can be so quirky” look I had grown accustomed to seeing on my parents’ faces was replaced with furrowed brows and pensive stares. I had only wanted to rave about the peas for my dedicated audience so they could buy the exact same kind and reap all the same nutritional benefits that I was consuming at the Kallem family dinner. But when I said it all out loud I realized that it sounded crazy. I sounded crazy. It had made so much sense before and I believed it with all my heart. Having a studio audience made me feel real and purposeful in a way I had never felt before. It finally felt like I fit. After being haunted for months by the unsettling feeling that people might be watching me, the enraptured fans tuning in now were my welcomed guests. But with a thunderous roar reverberating in my head, so loud it drowned out the audience’s applause, my completely-real-to-me architectured world came crashing down with the realization that I must be crazy. I was crazy, stupid, and shatteringly devastated. I hoped no one would take serious notice of this cognitive transgression and in utter disgrace I put the writers on hiatus and dug my slightly rusted scissors out of my dresser drawer, fully aware that I was back to collecting cuts and raiding medicine cabinets. Unfortunately my parents noticed and since I was nowhere near as mesmeric as Oprah I never met a casting agent or an interested executive; instead I met with Dr. Vaswani, the man who would be my psychiatrist. At our visit he told me I had bipolar 1 disorder and needed to take medication for the foreseeable future.
You’ve got to be rubber ducking kidding me. Not only was I an insecure, overweight teenager and a failed aspiring talk show personality, but now I was also certifiably insane. A long ongoing list of my erratic behaviors was filed in my psychiatrist’s office and all I wanted was to be normal like everyone else. The worst part of it all though was that I’ve always hated peas with a passion.
If you want to grossly simplify it, bipolar disorder is all about alternating moods. Except these moods, or emotional states, are extremely heightened versions of the feelings most of us experience every day. My cycling emotional states were classified as Hypomania (the fun Rachel who I think everyone adores), Mania (the high-energy, do-it-all Rachel who doesn’t notice the quizzical looks), Psychosis (the Rachel who is torn apart by terror that no one else can see or understand), and Depression (the Rachel who can’t bear it any longer). Dr. Vaswani prescribed me a long list of pills that promised to take away the ache and help me manage my symptoms, but the combination of capsules and tablets left my brain feeling damp and foggy. My thoughts became too thick to think and worst of all my Hypomania and Mania, who had made me feel so light, sparkly, and TV-worthy, all but disappeared under the weight of these mood stabilizers and antipsychotics. Losing Hypomania and Mania felt like losing the best parts of myself. I figured I was miserable either way, so why should I forfeit the one thing that made me happy? Holding firm with this rationale I flushed my medications down the toilet and resolved to make things better on my own. I had willpower and discipline, I could do it. [I extend my sincerest apologies to the highly mellowed out fish I inadvertently sedated in the Chesapeake Bay.]
* * *
Despite my parents’ concerns, after graduating from high school I attended college about two hours away from home, which is where I first tasted how sweet life could be with minimal adult supervision. In my newfound collegiate freedom, Mania truly shined. She became the beacon of light in the Sisyphean cycling of my illness. Mania blessed me with electric emotions, erotic ideas, and brilliant behaviors, which while they may have been clinically considered symptoms of my sickness, were divinely exalting for me. She gave me the confidence, and carelessness to channel the diva I always hoped I was and emboldened me to do whatever I wanted. Why not? I was marvelous, sublime, and lust-worthy. The Psychosis and Depression always loomed, so I enjoyed the Mania while I could. Thankfully, college made that pretty doable seeing as I could easily schedule my daily agenda around my Mania. Her never-ending energy and outright refusal to recognize that the real world has consequences enabled me to stay up all night, eat next to nothing, bask in the glittering glow of my own perfection, and for as long as I could I harnessed my Mania to keep myself in motion. Something definitely felt off, but my parents cautiously accepted that I must be “okay.” My grades were good, I saw my therapist and psychiatrist regularly, and I called home every week. But were things “okay”? No. Leading this double life, a crazy party girl masquerading as a sane model citizen, placed so much pressure on my brain that, unbeknownst to me, I began to splinter.
* * *
My drug of choice was particularly potent and highly volatile. It comes highly individualized, tailored to meet the exact needs of each addict. It speaks to you so personally and reads you so accurately that it is nearly impossible to turn down. I liken the special effects of my personal batch to exuberant fireworks whizzing and popping in my skull. When I’m submerged in its aura everything is electric and I am a beautiful, unpredictable livewire. How can I possibly say no to this feeling? Especially considering I get it for free. I cook up this magnetic high in my own cranial chemistry set and thus it is beyond easy to slip into this shameless, hazardous addiction. I willingly take the euphoria, the invincibility, and the immortality that leaves me feeling completely divine. At 17 when I was diagnosed with bipolar disorder my Hypomania was alluring and intoxicating. However, in the whirlwind that was college, my Hypomania rocketed from a somewhat manageable blissful state to full blown Mania. Mania brought miraculous feelings, sensations, realizations, and abilities that I never knew I had. Mania and I truly made for a stunning pair. I think somewhere in the back of my mind I always knew she would eventually kill me, but oh what a majestic, spectacular death it would be.
I once spent 72 hours, the weekend before midterms my junior year of college, researching the most notorious serial killers in the history of the United States. Taken at face value someone reading about the gruesome crimes of John Wayne Gacy, Ted Bundy, Jeffrey Dahmer, and Aileen Wuornos, is morbid and macabre but many people share a psychological fascination of infamous mass murderers. And most college students succumb to the sweet siren song of procrastination. However, after hours of intensive nonstop research, Googling related horror stories, surfing sinister Wikipedia pages, and watching chilling YouTube videos, I became incredibly paranoid, fearing for my life, and I didn’t sleep much for almost two weeks. I was so stricken with anxiety and tormented by the seemingly very real fear that someone was trying to poison me that I only ate packaged food for two months. But a college student living on cheap, packaged food seems kinda normal, right? I could feel the rusted corners of my brain turn to clotted dust but I thought from the outside looking in I was a convincing college student. I could keep this up.
The summer before my senior year of college I intellectualized my ingenious investment strategy of funneling my parent provided allowance into the George Foreman Grill market. No one in their right mind needs eight George Foreman Grills, but I was just pretending to be “ right,” so it seemed like a brilliant way to “spend money, to make money.” The logic was certifiably sound, at least to me. Will George Foreman Grills ever be recognized as legitimate currency? Hell, no. Do George Foreman Grills depreciate in value over time? Hell, yes. They’re just novelty infomercial gadgets. But when I purchased all eight, I honestly felt like I was planning wisely for my future. It took almost six years to pawn off all of those grills but I was 20, had my dad’s credit, and while it was ill advised and kooky, no one was hurt. Not even my credit score. It seemed sane-ish.
But it is terrifying to lose yourself to an illness that courts you one minute and buries you the next. The times I’ve been admitted to the hospital my psychosis was controlling me like a rattled puppet and I saw scrapes and scars on everyone and in every mirror and my eyes felt devilishly unfamiliar. I was frantic and terrified because nothing was real. And then suddenly in the very next moment everything was too real and it was really bad. People were trying to poison me and trick me into killing myself. I couldn’t see them and no one else could either but I just KNEW they were tucked behind every corner, dodging behind every shadow when I whipped my head around. I thought about God and Jesus and Princess Diana and how my teeth had betrayed me with their hidden microphones carved into yellowing enamel and their speakers glued to the under belly of my tongue. And it was just hard to think straight and steady a thought long enough to make sense of it before it whizzed away and sparked, lighting a tiny fire in the corner of my mind that eventually raged and roared and left my head engulfed in wildfire. My brain was a bonfire. I was psychotic and all alone, abandoned in an inpatient unit. Where was my intoxicating Mania now?
This is my bipolar disorder.
* * *
“I love you.” The first time he said it we had only been dating three months. Visiting my parents’ home, canoodling in my childhood bed, propped on his elbow, his eyes cast on my face he said, “maybe it’s too soon to say this but, I love you.” My old bedroom built into the second floor of a typical suburban house has periwinkle wallpaper and glow-in-the-dark neon stars plastered erratically across four walls and the ceiling. That night the room was radiating soft neon light like always but I was tucked in bed with a warm body that was keeping my cold self, safe and cozy. I beamed and told him I loved him too as I traced my fingers across the faint scar decorating his lower lip. He slipped playing Power Ranger tag when he was 10. It took me some time to share the stories behind my scars, but when I did he listened patiently, held me close, and loved me wholeheartedly. We fell in love madly and deeply, as 20-year-olds do, and drunk on trust I told him everything about myself, my disease, and the dark feelings that festered in my stomach. The honesty and openness was liberating and the fact he accepted me made me rethink how I felt about my self. Spencer helped me transform shame and silence into love and understanding. We went to different universities in different states but we spoke on the phone every night. I was a fourth year in college and I hadn’t taken my medication in years. Orange prescription bottles lined the circumference of my bedroom floor, still stuffed with pills and topped off with cotton. I had to keep refilling my medications because if I didn’t my parents would know I was going off the sanity grid.
Three months after our camp out in my childhood bedroom he said, “I can help you, Rach but you have to want this. You need to make this decision.” Spencer’s voice was eager yet supportive over the phone. I clutched my old Nokia that was crammed into a slightly too-small white plastic case dotted with cherries, and my confidence faltered for a second. My left hand was filled with the magic number of pills that promised to bring me back into myself, but I wasn’t sure who that Rachel would be. Part of me was convinced I wouldn’t love her and no one else would either. Back to a body marred with immeasurable flaws and inexcusable fatness. Reunited with a tattered heart destined for loneliness and a malfunctioning brain that would make anyone embarrassed. All of this stuffed inside the sullen frame of an insecure teenager who was desperate to be normal. At that moment I wasn’t sure who the real me would be, but I knew Bipolar and my dear friend Mania were no replacement for a real relationship. They are not human. I knew for certain I loved him more than I loved Mania. But I didn’t think I loved myself enough.
Mania, with her effervescent sparkles, her complete lack of doubt, her polished charm and tantalizing charisma, helped me discover a body so beautiful that it deserved to love and be loved without apologizing or second guessing. Mania gifted me with treasured feelings of unparalleled excellence, cosmic importance, and incomparable brilliance. With her I wasn’t normal, I was extraordinary. But I was a danger to myself. The sobering truth I had successfully denied since I was 17 soon became harder and harder to ignore, especially after stints in the psych unit. While my Mania felt magical, opulent, and worthwhile, it had a deadly expiration date. Mania was deliciously otherworldly up until I was catapulted into the terrifying atmosphere of Psychosis only to be viciously plunged into the murky depths of Depression. Mania made me feel electrically alive but at the risk of hospitalization or even death. Was it worth it? Was I worth it?
I fingered the chalky pills in my palm that the FDA pledged would patch me up, but I had never given a chance before. These pills would end my love affair with Mania, snuffing out her hypnotic open-all-night neon light. I wanted to fall in love with the boy on the other end of the phone who wasn’t my savior but who could quite possibly be my soul mate. I whispered to myself a soft and scared “you can do this.” For the first time in my life I decided I had to try and love myself without Mania’s candlelight vigil. And before I could change my mind, with one swift movement, I popped six pills in my mouth and drowned them with a glass of water. They left an unpleasant aftertaste on my tongue. I pressed my cell phone against my cheek and stated, “I can do this.” I was really going to try this time.
* * *
I haven’t seen the inside of a psychiatric ward since I was 22 because I refuse to let mental illness become my life. Yes, my life is much more “boring” now but that’s because when it comes to managing a mental illness the everyday details are far from exciting or sensational. My self-care may look like trivial routines, monotonous habits, and meticulous patterns woven into every day life, but this gritty hard work is the lifeblood of taking your life back.
I don’t want to be sick.
Hypomania, Mania, Psychosis, and Depression are all parts of the same serious illness that tells you, you are worthless. Parts that antagonize your anxiety, prey on the darkest fears tucked in your heart, and escalate your deterioration until Princess Diana is the only guardian angel you understand. I can’t have Mania in isolation, it is a package deal, which is why bipolar disorder is not a divine gift, it is an illness.
And I am not a diagnosis.
I finally understand that I have a mental illness, and I will always have it. And while that isn't "ok" it is my reality and I accept it. But that doesn’t mean I only exist as a bipolar person. On the contrary, this is my life and I don’t let bipolar disorder make my decisions anymore. I love the strong woman who lives at the center of each episode, who never leaves because she knows it gets better. I love the empowered woman who responsibly owns her mental illness so it begins to disrupt her life less and less.
I love myself.
I’m better when I’m not sick.
I am carving out a future that is defined on my own terms based on the decisions I make every day. My future is bumpy yet bright.
Even without my George Foreman Grill fortune.
* * * *
Rachel Kallem Whitman is the author of one of the essays from Lee Gutkind's most recent workshop on "Writing Away the Stigma."
The psychiatrist started, “Your mom has told me you’ve been crying a lot,” and continued to relay what my mother had reported to him.
“Yeah…” I trailed off into the corners of the room, while trying not to make eye contact. I felt as though I might start crying and then break down, and then they would know how sad I was. I felt guilty for not being able to tell him what was wrong, ashamed because something was wrong with me that I couldn’t fix, and now I was at fault for upsetting the people around me by being abnormally sad.
At this point in my life, I had only heard about the world’s crazies, lunatics, and psychos from the adults on basic cable. My books didn’t really talk about insanity too much, unless the story was describing a “mad” character whose personality was more rebellious than a product of illness. Plus, any writers worth their salt shared one thing in each of their biographies: a baptism by fire in the same font of madness. Like they say, if you can’t stand the heat, get out of the kitchen.
When I was younger, the morning TV news said that last night, an escaped mental patient hid behind one of the trees near the road at the edge of the state hospital grounds, a mile and a half from our house. The escapee waited out of view until a single car came barreling down Hillside Drive. Then, he leapt out into the oncoming high-beams. On other occasions, when a mentally-ill patient escaped from the state hospital, the emergency notifications from the local news would interrupt our regularly scheduled program to inform us of the ongoing search. We children were taught to treat this information in the same fashion as if we had heard that an armed and homicidal serial killer was on the lam. We were taught to incite the same panic within ourselves if we were left in the car.
Lay on the horn if anyone comes up to the car. Keep the doors locked. Don’t talk to anyone. And, never let anybody in.
The strangers, the psychiatric staff—the ones in the white coats and ID badges clipped to their front pockets: I knew they could lock me up and never let me out and no one would come to get me. I knew enough to keep my mouth shut. I saw leathery and chalky straight-jackets with the sleeves crisscrossed in front and buckled-down in the back. I saw padded cells and isolation rooms from TV shows and movies: powerless, screaming faces being treated like criminals for being unable to control their emotions.
That was mental health care.
The psychobabble man shifted, with his choreographed cock-of-the-head listening gesture, and then he started asking the questions you can readily find on any mood chart.
Finally he asked me, “And do you think about hurting yourself? Do you have a plan to kill yourself?”
I panicked. I lied.
How could he know? No one was home when I tried. I mean, how could he possibly know how bad it had gotten? When he was satisfied with my answers, he called my mother into the office with us; he explained that I had reported that: she’s not suicidal, just depressed, keep an eye on her.
When I was home alone one night in the late winter, shortly after I had turned 13, my depression started talking back to me. I found myself crying and having an anxiety attack, crumpled on the cloudy blue shag rug in my bedroom. The next thing I knew was that I was sitting on the floor of my closet, clutching the glass rosary from the top of my dresser. I had started hearing voices. Now, mind you, they weren’t distinct voices telling me to do anything—it was more like a muted din of several whispery, gossipy voices talking about me and it didn’t sound good. It was my first auditory hallucination.
When the voices finally evaporated, I pulled myself up from the small planks of cedar, put down the rosary, took a seat at my desk, and then started writing a suicide note in blue gel pen on a lined, loose-leaf page of notebook paper. In the letter I apologized to the people that I loved: mostly friends and their siblings. I didn’t know how to get rid of the pain. And I was sorry. I loved them. I couldn’t stop crying and I was sorry. I continued the letter and apologized to them each by name.
And then, I just stopped.
I actually said, “Fuck it,” and stomped over to the bathroom directly across from my bedroom, tore up the note, and flushed it down the toilet. I watched each shred of a robin’s egg blue inked, college-ruled paper swirl down the bowl. I waited until the toilet re-siphoned the tank and was quiet again. I gave it a second flush to be sure the letter was gone for good.
We arrive to the hospital in January 2006. My husband Alan is scheduled for a neurosurgical procedure. The moment is finally here. I’m hopeful but tired from caring for my husband. The first step will be to attach a metal skeletal frame which encloses his head and mounts to his skull with screws; this prevents movement during the daylong operation. Then, an MRI determines the target in the brain for the radiation therapy called “gamma knife capsulotomy.” This novel treatment has only fifty published cases at Brown University, and intends to interrupt my husband’s obsessive compulsive disorder (OCD) symptoms.
The procedure’s non-invasive. Instead of opening the skull, focused beams of radiation are delivered to a target on each side of the brain, creating a speed bump disrupting the intrusive OCD thoughts. Alan’s OCD is skin picking. He forgoes eating and sleeping to tend wounds he has picked or seeking to smooth rough places on his body. I refuse to accept that I’ve lost my intimate life partner to OCD.
I wait in the waiting room with his psychiatrist. The wait seems very long. The surgeon comes out and assures us that although the first target took longer than expected, the second one wouldn’t. I’m allowed to visit him in between treatments.
Alan reports, “Chuck was here borrowing money and I have to pay him for the snake.” I wonder what they’ve done to his brain; nothing makes any sense. The neurosurgeon says it’s from the sedative.
He’s kept overnight for observation. When we’re reunited, he’s hungry and asking for sandwiches, inquiring, “When will I have the procedure?”I’m amazed and optimistic. He’s discharged the next morning. Now we wait to see if the therapy will work, which may take eight months for the brain to begin to re-wire itself.
Capsulotomies are novel therapies, and it was difficult to find a surgeon willing to perform one due to psychosurgery’s history. Until the 1970s, lobotomies were commonplace if you lived in an institution; now, ethics communities almost invariably won’t allow it in any circumstance. Back then they were performed without anesthesia by psychiatrists. This entailed crudely swishing an ice pick-like instrument inserted through the eye socket back and forth through the brain’s lobes, usually destroying the very person they sought to cure.
Today there are no asylums to speak of; seriously ill persons are usually left to their own defenses, or in our situation, with a wife to try to figure out what’s going on.
After Alan’s diagnosis in 2001, we found out there were no treatments. Skin-picking was not in the DSM—the Diagnostic Statistical Manual—which defines all mental disorders. If it’s not in the DSM, it cannot be treated and hasn’t been studied.
For 12 years, Alan searched for flaws in his skin that may have needed correcting, using tools such as scissors or tweezers. I was overwhelmed watching his destructive behaviors, so I began reading medical journals and attending conferences. In 2004 I discovered the procedure being done at Brown.
Alan wasn’t leaving the house at that time and refused to travel for the surgery consult. He desperately told me, “You don’t understand—I will die if I leave the house.”
“Don’t worry, if you die I’ll be with you,” I responded.
We arrived at Butler, Brown University’s psychiatric hospital. It looked like an old asylum. No—it was an old asylum. We passed through a large gate, drove up to one of the Gothic Revival buildings and found our way to Dr. Rasmussen’s office; Dr. Grant was also present. They said that this procedure was for extremely ill persons. The doctors asked, “What would you do if we handcuffed you?”Alan became frantic. They were just testing him, but he thought they would do it. They explained possible prerequisite medications trials, and suggested habit reversal therapy. Alan’s treaters back home had already exhausted these suggestions. We left thinking we’d soon receive their decision.
Starting the drive back to Pittsburgh, I went to McDonalds for coffee. The girl at the drive-thru window whispered, alarmed, “There’s a man behind your car!”
I responded, “Not to worry, that’s my husband.” He had gotten out to smoke, and was walking behind the car. At this stage of his illness he was indistinguishable from a street person—emaciated, no haircuts due to open wounds, his gait shuffling due to the psychiatric medications.
But I was still elated from our appointment; I had found help for us, hope for him.
Trauma during development or, childhood trauma, changes the architecture of the physical brain and the ability to learn and social behavior. It impacts 2 out of 3 children at some level, but I didn’t even know what it was…
Childhood Trauma, or adverse childhood experiences(ACEs)can be defined as a response of overwhelming, helpless fear to a painful or shocking event.
ACEs include physical, emotional and sexual abuse, physical and emotional neglect, a missing parent (due to separation, divorce, incarceration, death), witnessing household substance abuse, violence, or mental illness and more.
The children are not sick or “bad”. Childhood trauma is an injury. It happens TO the child. In turn, when they become adults, many re-enact their unaddressed trauma, injuring the next generation in a merciless cycle of pain and fear. When the injuries fester unaddressed, they set off a chain of events leading ultimately to early death, according to the CDC.
Developmental trauma changes the physical architecture of a developing child’s brain. flickr Public Domain
Part 2: The changes to the neurobiology predispose hypervigilance, leading trauma-impacted children to often misread social cues. Their fears and distorted perceptions generate surprising aggressive, defensive behaviors. The ‘hair trigger’ defenses are often set off by deep memories outside of explicit consciousness.
Adults’ view, from the ‘outside’, of the seemingly illogical, or worse, oppositional behavior, is one of shock, confusion, frustration and maybe anger.
If we act on our uninformed views, we risk retriggering more of the child’s trauma, and even more aggression. I confess, as a less experienced classroom teacher, I often did exactly that.
Outward behaviors are easy to recount.
The inner pain and fear are often intentionally camouflaged and nearly impossible to perceive from the outside.
The trauma history which is connecting the inside fear to the outside behavior is often buried so deeply that even the injured can be unconscious of the connection.
ACE-impacted kids are more common than seasonal allergy sufferers Childhood trauma is not a “color” issue. It’s not a geography issue. It’s not an income issue. Experts including Surgeon Generals and the Attorney General have used the specific terms ‘national crisis’, and ‘epidemic’. The CDC says trauma impacts are critical to understand.
CDC scientists found that even in beautiful, suburban San Diego about one-fourth of middle class, mostly white, college educated, working folks with medical insurance had THREE or more ACEs!
Three or more ACEs is significant because three+ ACEs correlate, over a lifetime, with doubled risk of depression, adolescent pregnancy, lung disease, and liver disease. It triples the risk of alcoholism and STDs. There is a 5X increase in attempted suicide.
Children can not address their trauma alone. They need our help.
Other adults normalize the pain and fear of the injured child, thinking “they’ll get over it.” It’s actually the opposite. Young children have fewer coping mechanisms and their immature brains are still developing. The impacts of trauma are actually greater on the still-developing brain.
Schools are not trauma-informed organizations I am embarrassed to admit my own ignorance.
I did know about the inner pain and fear of my students more intimately than most. I began, and still begin, every school year by visiting my families, sitting in their living rooms to discuss school, life and their concerns about their child. In the classroom, I quickly experience the child’s outward behaviors which could seem random, nonsensical, and often angry.
Yet, I still did not easily connect the outward behavior in class to the fear or pain.
As an adult, the classroom seems “safe.” There isn’t an obvious or logical connection to continuing fears, in our safe context. It seems contradictory.
What I forget is that the pain and fear are not in the environment.
The pain and fear are hidden inside the child: they bring intense fear memories with them like they bring their backpack (wherever they go).
Making the connection, intellectually, was made even more difficult ‘in the moment’, in the midst of emotional, intentionally distracting, sometimes screamed, personal insults or abusive attacks from the triggered child.
Even when I was able to stay calm myself, and then connect the (seeming) anger to the (hidden) fear, that was only the beginning. I still did not understand.
The group context, or the social complexity may be the most difficult aspect of all.
If I did maintain composure, then I realized quickly that the other 30 children in the room did not all wait calmly or politely for me so I could focus solely on de-escalating one of their peers.
I also learned the hard way that when I maintained composure in the midst of the barrage, it seemed like “unfair” leniency to other children. Those peers see only the aggressive outward behavior and they expect “punishment”.
Even more learning: the aggression of one student and the related commotion will likely trigger a second student’s fear, maybe others too.
Keeping the academic context in mind: all above is about one instance only. Meanwhile, each minute ‘lost’ to de-escalating that single student is a minute lost to academic endeavors for all thirty.
Now, imagine NOT being trauma-informed and facing 20 to 30 students, and NOT knowing that 25% to 50% are trauma-impacted…
“Success” would require becoming expert at detecting multiple, virtually undetectable triggers, within multiple students. It is not quick or simple or instinctive.
That same teacher must become expert at de-fusing all those students’ fear triggers, and all in advance of any “fight or flight” response.
All day today.
All week this week.
All month this month.
More context: A teacher is not permitted to consider adjusting the scope or pace of the “Common Core”, or academic, “national standards” which are linked lesson-by-lesson and which lead to “standardized” testing. These regular, test stresses are controversial for many reasons. Trauma adds more controversy. First, the stress can re-trigger traumas. Second, the higher concentration of violence and stress in urban settings, with higher concentrations of students of color, and higher concentrations of trauma impairing cognition keeps the achievement gap alive and well.
Let’s pile on top: budget cuts for public schools each year translate to fewer adults with fewer resources to accomplish trauma-informed education, year after year.
“Teaching” in this context becomes nearly impossible at many points.
We are trying to scoop water out of a boat with gaping trauma-holes in the bottom.
Trauma-impacted children are losing their right to equally access their education, while adults stand by, while school districts stand by, while states stand by.
That leads, of course, back to the central aspect of the context:
Schools are not trauma-informed organizations Just as children can not address their own trauma alone, teachers can not create trauma-informed school organizations all alone.
“Success” with trauma-impacted students comes slowly, over time. It is crucial to maintain a predictable, calm, “safe” environment, and “safe” relationships, school-wide, with all adults responding calmly, hour by hour, day by day, month after month. And that’s only the beginning.
Training school-wide staff and implementing trauma-informed practice is essential. At the school level, we should also be identifying, or in some way screening for, students’ trauma histories. It’s too easy to miss those who are quietly dissociating. We should also be re-evaluating zero-tolerance discipline stances. We should also be adjusting efforts against the “achievement gap” to areas with greater violence, stress and trauma. We should also be “understanding” the impotence of “standardized” test-and-punish model for academics in a much clearer light.
Help build awareness of childhood trauma “Nowhere to Hide” blogposts are designed to help grow awareness of childhood trauma. They each focus on a single component of the workings of developmental trauma, via a real life example in short, “30 second” or “60 second” soundbite Links, akin to “Public Service Announcements” (PSAs).
They are true stories in two series about the lives of specific children impacted by trauma. Pseudonyms are used in each of these true narratives. Adult roles and gender have been disguised.
Let me emphasize that most of the children in the stories were in a single neighborhood. Each one passed through my classroom. More than half were in the same classroom, the very same year”.
Please, share the “PSAs” widely The “Nowhere to Hide” PSA Links are meant to be easily, widely shared, one or two at a time, in social media.
Developmental trauma, still “the elephant in the [class]room” for many adults.
Trigger warning: the children’s experiences in the vignettes are painfully real. The children have been changed forever by the impact of their trauma.
Readers can read the entire collection of vignettes on the Lucid Witness website. We hope you find the series helpful, both personally and professionally.
Daun Kauffman – For 16 years now, Kauffman has lived, walked, taught, hurt, grieved, cried and even occasionally laughed with trauma-impacted children, personally. They have shared days in the classroom and evenings and nights in the neighborhood, where the children have “Nowhere to Hide” when they leave school for the day.
Daun’s journey into their worlds began after a life-changing rebirth as a public school teacher, from out of executive suites. It began with reassessing his own life and then going back to school to earn a Master’s degree in Education at Temple University. Kauffman’s MBA from Harvard University Graduate School of Business had been an asset in the prior 17 years in business, leading a variety of consumer packaged goods brands. Now, in public school classrooms, it would not be much help. You can learn more about Daun's work by visiting his website, LucidWitness.com.
~ Morning Zen Guest Blog Post - Melissa Radcliff ~
When Ann Adalist-Estrin, Director of the National Resource Center on Children and Families of the Incarcerated, e-mailed us this spring and asked if we’d like to invite a young person to participate in two listening sessions hosted by the US Department of Health and Human Services and the Department of Justice in late June in DC, we jumped at the opportunity. Of course we’d like to invite someone . . . and we had just the person in mind.
Our post-DC breakfast with this recent high school graduate (“Gina”) and her mother who participated as a chaperone reinforced for us that we had made the right choice. Her description of the sessions, what she learned and offered, the folks she met, what she thought would be next steps, the questions asked, and her interest in continuing the conversation as she moves onto college was thoughtful and heartfelt and such a powerful reminder that she and the others in the group are indeed the experts.
Our Children’s Place of Coastal Horizons Center works to create a community where children of incarcerated parents are recognized, supported rather than shamed and stigmatized, and encouraged to share their stories. Some days it feels as though our efforts lean so much towards data (exactly how many children are we talking about?) and impacts (ACEs, school performance, mental health concerns, etc.) that we overlook and/or forget about the part where they share their stories.
Gina and her mother had a number of suggestions about what could happen here in North Carolina (and likely in other states as well). What additional information can we provide to guidance counselors who are helping students with incarcerated parents complete college applications? How can we ask the right questions to ensure that the counselors and therapists we send our children to have experience working with those with incarcerated parents? What can be done so that children and families have a better understanding of the criminal justice system, how events there will unfold, and what the potential impacts could be on their family?
They also emphasized that while a common denominator for the youth was having an incarcerated (or formerly incarcerated) parent, the stories showed many of the different ways parental incarceration impacts youth. As Gina’s mother pointed out, not all youth want to develop a relationship with their incarcerated parent. She stressed that we must listen to the youth and to hear they need. And to understand that the need may change over time.
Fortunately for all of us, these listening sessions were simply the start. The group is creating a tip sheet for providers – a wonderful and much-needed tool. But we also expect to see youth panels develop in individual states, discussions about accessing health care (a concern raised during the sessions which lead to “should there be a question about parental incarceration on health care intake forms?”), and conversations about balancing security concerns of jails and prisons with the needs of families to have consistent facility policies and procedures that recognize the importance of child-parent relationships.
Thanks to these youth panels, we’re hopeful that folks in DC sat up and took notice. Now we must work as allies with these youth as they continue their work, at both the state and federal level, creating a network of youth with incarcerated parents. Count us in!
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Melissa Radcliff is the executive director of Our Children's Place of Coastal Horizons Center, a North Carolina non-profit dedicated to identifying and supporting children with parents in prison. Radcliff comes to this work with more than a decade of experience working with victims of violence and trauma in a variety of settings, ranging from their homes to hospitals and courtrooms.
Sitting in an examining room, waiting for a yearly physical checkup, I am hoping I will like my new family doctor and this new practice. Kelly, the physician’s assistant, enters my vital statistics into the computer while I study a poster on the examining room wall demonstrating how to “cover your cough.” This reminds me I need to get a flu shot during this yearly check up. Kelly looks at me; her fingers still on the keyboard and asks, “Do you take any medications?” I re-adjust my gown and ask her, “How is my blood pressure?” trying to stall. “Am I taking any medications?” I repeat in my mind. The answer would be “yes,” yet I am not sure I want to admit that to her and have it typed into my records. The information will go out into cyberspace for everyone to see. They will recognize the names as anti-depressants; and not knowing me, I fear they will judge me wrongfully. She looks at her watch, and I say “No”.
I surprise myself with the lie. Yet, I feel the need to protect myself. Even people in the medical profession vastly misunderstand depression. Kelly stands, smiles and nods, then turns, opens the door and leaves. I want to call her back and say, “I know you are educated and surely aware of the research done with brain scans that show depression is an illness. You have knowledge, but do you understand?”
Would she understand, who would understand, that I have been so sick, I have crawled into my bedroom closet in a desperate attempt to escape from life? Lying in the closet, self-loathing along with depression’s relentlessness made my every thought torture and my every muscle hurt. I hit my head repeatedly against the closet wall in a frantic attempt to distract myself from the depression’s horrific pain. Fear crawled through me like a serpent coiling itself inside of me. I felt a weight laying heavy on my chest, suffocating and disabling me. I curled up into the fetal position, crying, smelling shoes, a belt buckle stabbing into my ribs. I ignored the calls to find me as I buried my head in my hands. My chest heaved and shook, as tears dripped from my chin. In the closet I strained for any hint of light, any hope, any help. There was nothing just a complete absence of light. My life felt as dark as the closet and it seemed there was no escape.
I could further explain. I stopped running along the river, I stopped planting my vegetable garden, I stopped going to book club and I stopped inviting people over for Sunday dinner. I let the phone ring when friends called to laugh and chat. I couldn’t even sit down and write a simple thank you note or pay a bill. And I stopped making cinnamon rolls. I condemned myself for not having the strength to do it. Hot, homemade cinnamon rolls are one of my family’s favorite treats and I enjoy making them on special occasions.
Depression robbed me of many things. Yet, I slowly found my path to wellness. I say path but it was more like an obstacle course. Through medical care, medication, therapy and a determination to fight and conquer I have learned how to manage my illness.
I made a “tool box” for myself. The box, blue with gray stripes and green flowers was a large make-up kit that I removed all the plastic dividers from and began to fill it with items I found inspiring or helpful. These articles all gathered into one place, makes them easily available for me to use. There are CD’s of John Denver and Simon and Garfunkel music, stationary pages, worn from use, with uplifting quotes and scriptures written on them, ideas for exercising written down, ideas for service, a couple of my favorite books and some family photos. There are articles about depression research I clipped from magazines, a small gratitude journal, my favorite picture of Christ and more. The items in this box help me to maintain courage. A day-to-day courage that comes one step at a time and receives no medals. Yet, it is this courage that gets me to my psychiatrist’s appointments and helps me to take my medication daily. It is this courage that sustains my continuous efforts to manage depression. It is this courage that makes me strong and helps me feel like me again.
That day, as I leave the doctor’s office I am determined not to lie again and, cowardly, perpetuate the stigma of depression.” I have so much I can share. I am the one out of four people who suffer from this illness, and I know that this illness is life threatening and disabling, if not treated. I can encourage people who are suffering to seek professional help. It will validate them, lessen their suffering, help keep their relationships strong and bring wellness. There is light. There is no need to be afraid.
Then I would want Kelly to celebrate with me as I tell her about the morning when I woke up feeling calm and went downstairs to the kitchen. Sunbeams from the window brought in an array of color along with their light. I was joyful that I noticed color again. I smile, while sprinkling flour on the counter top; I began mixing and then kneading the dough, hot cinnamon rolls would soon be on the table.
Note to CMHNetwork Readers: Over the next eight weeks, CMHNetwork Advisory Council member Lee Gutkind has graciously agreed to share the writings of individuals who participated in his most recent workshop on "Writing Away the Stigma." Network readers will remember the popular series of essays we featured from his 2015 workshop. This week, we begin with a commentary from Lee Gutkind on his experience leading the Writing Away the Stigma workshop. Enjoy!
Ainsley and Camille were the two I worried about the most. Ainsley, because she seemed so fragile, sitting so stiffly in a chair around our conference table, as if she was sucking in her breath, afraid to exhale, awaiting judgment. Camille couldn’t stop second-guessing her work. If I soothed her doubt about what she submitted one day, she insisted that she was lost about what to do next.
Ainsley and Camille were two of the students selected for a class I created and taught this winter called “Writing Away the Stigma.” More than 150 people—nonprofessional writers--from across the country had applied for the class which had room for only 12. Over the course of five weeks, with only one three-hour meeting per week, the students, ages 20-61 were expected to write a publishable creative nonfiction narrative from start to finish—a true story about how they or someone close to them had fought through serious mental illness.
There were many reasons I wanted to teach this class, beginning with the stigma attached to mental illness. Stigma is such an awful and damning word--defined as a mark of shame and packed with punishment. Because people are mentally ill they are denied jobs and often shunned and ridiculed in neighborhoods, schools, even in their own families.
I know as someone who has edited and written many books and articles about people with mental illness that the vast majority will recover. And while medications are helpful, it is usually the grit and determination of those who suffer that eventually lead to productive and satisfying lives. Their stories need to be told in order to eradicate the stigma and change the way in which people judge and relate to them.
True stories are the most powerful persuaders. Readers remember and retain more information longer—and are more easily influenced—when ideas are communicated in narrative, rather than in a straight exposition of facts. Stories are fascinating and compelling learning tools not just for readers but for writers themselves. Writing and rewriting, thinking and rethinking, can clarify and bring meaning to writers’ tumultuous journeys. This is what I have been trying to do most of my life: teaching new and inexperienced writers, how to recreate their lives to make an impact and change the way they think about their lives.
I felt especially responsible for and protective of these students. Most had attempted, threatened or imagined killing themselves. Would they be strong and together enough to withstand criticism from me and the group, not to mention the pressure and frustration of writing under deadline?
As we sat around the conference table each week, I saw Elaine who had locked herself in closets and undergone electroconvulsive therapy to fight off her depression for decades. She flew into Pittsburgh where the workshops were held each night from Chicago for the class. And there was Chris, a former high school teacher, who had served three tours of duty in Afghanistan and Iraq haunted by the memory of a little boy who had lost half his body in an explosion. He commuted each week from Kentucky. They were all so brave, and they were relying on me to help them through the trauma of remembering to discover a purpose and a meaning for ostracism they had endured.The workshops were free, compliments of a local foundation, but the participants interrupted their lives and traveled at their own expense.
Ainsley had come the longest way—from a small isolated ranch in Idaho where she had found a partner and a place to help temper her severe depression after twenty years of struggling. Camille had actually relocated; she had just lost her job in Detroit. So she packed up her belongings, got in her car, drove to Pittsburgh, found an apartment and made up her mind that “Writing Away the Stigma” would launch her new start in life.
Camille, 28, had been diagnosed with major depressive disorder, bipolar disorder, post-traumatic stress disorder and symptomatic borderline personality disorder. She was haunted by her mother, who killed herself when Camille was a teen. Camille describes her mother as narcissistic and threatening, a compulsive liar and master manipulator. “I could see myself in her behaviors: the long days in bed, the emotional eating, and the shirking of responsibilities. I could not help thinking about my worst fears materializing: I’m just like her.”
Ainsley had been famous—or, at least, her face had been famous. A fashion model at 17, plucked from a small town in rural Canada after winning a beauty contest, Ainsley had appeared on the covers of many fashion magazines. She had lived in New York, Paris, Milan and London. At 20, she had been diagnosed with depression. When she was accepted to the program, she too took a big chance, relocating temporarily for six weeks, just to take the course and write an essay. During the first class, she told us: “I was in the unique situation of hawking happiness when I lived its extreme opposite. If I was living the dream, a life that others would kill for, why did I spend most of my days wanting to die?”
The first assignment, due the second class, was to write a brief proposal—an outline or abstract of the one story that captured their struggles with mental illness. It sounds rather simple, but was a tremendous challenge, for what my twelve students really wanted to do was to write the story of their entire lives, from start to finish—their hospitalizations, their medications, their suicide ideations, their feelings of rejection, and their recovery. Their journeys through mental illness were remarkable, but I had to continually remind them, “You are not writing a book—just an essay. What are the incidents in your life that most affected you and caused a change, made a dramatic impact? Pick one or two and make it matter. That’s what readers will want to hear and read.”
Another obstacle: Because they understood each other so well and felt comfortable sharing, I had to constantly interrupt them to force them to focus on each writer’s story—what was written on the page. I found out later that many members of the group would meet privately and email each other before and after the workshops to share the full scope of their challenges and problems.
“I was extremely anxious—hoping to find a group of like-minded people who could understand what I lived through—and that is exactly what happened,” said Ainsley. “I have never been able to speak so movingly and truthfully about what I experienced—but everyone came into the situation with zero judgment—it was a safe place.”
The second assignment was to write a scene—one small story, no more than 500 words, capturing an event that evoked an awareness that precipitated positive action—something that helped them reverse a downward slide. That scene would serve as the launching pad for their entire story.
Each workshop session brought forth a conflicting mix of excitement, anticipation, fear and dread. What would their fellow workshop participants think of their writing? What would I or my assistant, Sara Button, think? Writing workshops can be devastating as well as cathartic. You try to be honest and direct with each student because you know they have come to learn—but at the same time you try to be gentle and polite, knowing how much each student has at stake.
For Ainsley, there was more at stake than I knew at the time. “I left my life back home and this was the only thing I was concentrating on every day,” she told me later. “For sure I was about ready to cry in class, but before the class, writing and revising, I was bringing myself back to those times where I cried all the time every day. I hadn’t felt those feelings for years, but revisiting it on the page in Pittsburgh, was really emotional. I spent the month being very on edge, crying more by myself than I had in a long time.”
Camille wasn’t crying, but she was forever complainingbecause she felt stuck. She wanted me to tell her what to write and instead I told her what I tell all struggling students: “Write your story, trust in yourself and your instincts, and you will discover where it takes you.” This was unsatisfying—vague, she complained.
One scene in her first draft was especially powerful and heartbreaking. Her mother had obsessively taken pictures of her children since they were born, documenting the family as they grew up—until one day she suddenly snapped the camera shut, popped out the batteries and proclaimed: “That’s enough.”
But it wasn’t enough, as Camille wrote: “I was sitting in the living room reading when she started flipping frames over one by one. She never said a word as she reached across the couch and yanked a picture off the wall. Each day she would turn down more, and each day I would cry harder. She was trying to make us disappear, to pretend her children never existed.”
I was moved by her image and the heartbreak it must have caused and I blurted out that I would never forget that image—even if I might not remember who wrote it. At first, she was taken aback, unsure of how to take my remark, until she realized that for me, her teacher, it was ultimate praise. That moment, she said, “was huge for me.” And it reaffirmed my initial advice to trust her instincts.
A similarly pivotal event for Ainsley came when a classmate, Heather, wrote a long story about being forced to stay in the hospital, incarcerated, after taking an overdose, begging to be released. Her physicians resisted despite her protestations and Heather wrote that in retrospect it was just as well because, “Had they let me come home, I would have immediately killed myself.” Her scene played out beautifully and her timing was perfect, and I remember jumping up and exclaiming, “Great!”
I had meant, “What a great sentence! A wonderful last line to the scene!”—but suddenly everyone in the room was laughing like crazy.
“And I had this moment,” said Ainsley, “when I thought that if somebody had told me ten years ago that there would be a day when I was sitting in a room full of people sharing my story and everybody else’s story about wanting to die and that we would all be laughing about it, I would have never believed it. That was a magic moment for me.”
For me, for all teachers trying to guide, inform and inspire their students, there are those magic moments in the classroom that make your efforts worthwhile. You wait for them and live for them, never knowing, of course, when they will occur and the impact they will make. I remember that scene just as vividly as Ainsley does. At that point I knew, as we all laughed together, that I needn’t worry anymore about this group of students and the seemingly overwhelming challenge they were facing.
When a foster youth encounters a Psychiatrist, chances are high that s/he will get medicated. Traumatized foster youth are often prescribed powerful psychotropics due to exhibiting a wide variety of “normal reactions to abnormal events”, such as despair, agitation, anxiety and self-harm. The practice has been well documented; foster children are prescribed psychotropics at a 2.7 to 4.5 times higher rate than non-foster youth. The National Center for Youth Law aptly summarizes the problem as; too many (25% of foster youth medicated), too soon (300 children under the age of 5 in California are given psychotropics annually) too much (adult dosages) and for too long (no planning or reviews for possible discontinuation). Many foster youth don’t even get placed on the category of medications that corresponds to their assigned diagnosis. According to a recent analysis, 40% of foster children diagnosed with ADHD and Disruptive Behaviors were prescribed anti-psychotics. Still others are medicated without even the pretense of treating a documented illness. This pattern suggests that medications are being expressly used for behavioral control. Foster youth are at risk for being placed in chemical strait-jackets.
In California, belated progress is being made in effort to curb the egregious over-medication and under-treatment of foster youth. Several key pieces of legislation have been passed with widespread support. An ongoing workgroup has been convened to develop data collection methods to identify who is prescribing what to whom, as well as implementing prior authorization and second opinion mechanisms. Attention is also being focused on building up the trauma informed care capacity to ensure that foster youth are offered “1st line” psychosocial treatments and make medications the last resort. Funding for Public Health Nurses to monitor medicated foster children and youth for metabolic complications is also being requested.
But there is an unacknowledged conundrum waiting in the weeds. Workgroup participants are discussing ways to distinguish between trauma impacts and true “mental illness”. As if there is some way to sort through the many “symptoms” (trauma adaptations) and assign them to discrete categories of disease vs. distress. The DSM 5 largely ignores issues of causation and context. (Let’s stipulate that virtually all foster youth and children have some form of traumatic stress reactions.) When viewed through the distorting prism of the DSM 5, foster youth’s many understandably disturbed behaviors are seen as pathological indicators of an incipient brain disease. “Psychiatric Bible” thumpers cast an ever expanding net that entangles most foster youth experiencing problems in thinking, feeling and behaving – the kinds of problems that most of them have in spades.
Perceptions of anguished foster youth are so shaped by the dominant bio-reductionist disease model that some have suggested that perhaps foster youth suffer from co-existing disorders - both trauma and a “co-occuring” brain disease. This seems to violate the Law of Parsimony – explaining things in the simplest way, while making the fewest possible assumptions. For example, let’s say someone’s lip bleeds due to being punched in the mouth. From a biopsychiatry viewpoint, someone’s lip bleeds due to a genetically predisposed lip disease that was triggered when they got punched. Poor Occam would throw away his trusty razor in disgust.
Developing trauma informed, (First – Do No pHarm?) alternatives will be key to the efforts focused on decreasing the high rates of psychotropic medications for foster youth and children. But it won’t be easy and it won’t be cheap. (Perhaps some of the $226 million that California spends annually on medicating foster youth can be redirected?) American culture has a long standing love affair for technological solutions in the form of pills. Pills that can tamp down and suppress the howls of pain and anger brought on by chronic abuse and neglect. (“Zombify” in the words of many foster youth.) The experience of trauma at early, vulnerable ages often results in grievous wounds that can take a life-time to heal. Dr. Bruce Perry, author and Director of the ChildTrauma Academy, argues that most current treatments for these kinds of developmental traumas are inadequate. That much trauma informed care is delivered for too short a time, at too low a ”dosage”/frequency, and are misdirected at “too high” of a neurodevelopmental stage (focused on cognitive and language processing, rather than more somatic interventions) Clearly much work remains.
Perhaps, one day, after many more billions of dollars in myopic research, a true biomarker or mental illness gene will be identified. (The dispassionate scientist in me, allows that it is possible). In the meantime, can the prominent pachyderm in the room be acknowledged? – that the horrific, toxic stressors that foster youth have endured can lead to many disturbances in their young lives and they will require all the care and support we can muster. It is unacceptable that after suffering so much from the collapse of their family systems, that foster youth and children are further subjected to potential abuses by misguided treatments that carry such high health risks and stigma. Understanding and compassion for “what has happened” to foster youth, rather than “what’s wrong” with them is imperative.
 U.S. Government Accountability Office. (2011). Foster children: HHS guidance could help states improve oversight of psychotropic medication (Publication No. GAO-12-270T). Washington, D.C.: Author. Document Number)
3 Crystal, S., Mackie, T., Fenton, M.C., Amin, S., Neese-Todd, S., Olfson, M. and Bilder, S., 2016. Rapid Growth Of Antipsychotic Prescriptions For Children Who Are Publicly Insured Has Ceased, But Concerns Remain.Health Affairs, 35(6), pp.974-982. (Abstract)
4 California Psych Meds Legislation Advances – youthlaw.org/publications
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Wayne Munchel, LCSW is a leader in mental health programs designed for transition age youth. He was also a founding staff member of The Village, an innovative recovery program located in Long Beach, CA. Mr. Munchel provides trainings and consultations for services to young people, including trauma informed care and supported employment.
This coming Wednesday, two days after the 4th of July celebration of our country’s declaration of freedom from oppression, the U.S. House of Representatives will vote on HR 2646, the Helping Families in Mental Health Crisis Act of 2016, or HR 2646. It is also known as The Murphy Bill. The ORIGINAL Murphy Bill. In truth, it has nothing to do with freedom, and everything to do with oppression.
HR 2646 is a heinous piece of legislation that has been hailed as the solution to the nation’s problems with gun violence, terrorism, and the massive influx of people with mental health conditions into the correctional system and the burgeoning ranks among the homeless. Not to mention that it will save untold hundreds of thousands of families from anguish and unwarranted pain. And it is a calculated, repulsive lie.
The National Coalition for Mental Health Recovery is calling upon all people of like minds, who care about individuals who need mental health services, to ACT. It is urgent. Please call your representative in the House of Representatives to vigorously oppose HR 2646 on Tuesday, July 5, 2016. And, call your Senator to insist that the Senate reject any amendments or changes to mental health legislation from the House by Friday, July 8, 2016. For more information about this Call to Action, please click here.
We have been fighting battles on many fronts for decades. The medical model of MH care has had the financial backing and the political power to convince the public and our Congress that people with mental health conditions must be coerced into taking psychotropic medication and into psychiatric care, for everyone else’s sake. Here is a rebuttal:
Nothing about Us without Us HR 2646 describes the membership and duties of the following entities:
The National Mental Health Policy Laboratory
The Center for Behavioral Health Statistics and Quality
Peer review groups that review grants, cooperative agreements or contracts related to mental illness treatment
None of these entities includes the membership of people with lived experience with mental health conditions. We have been excluded from entities that will make important decisions about our lives.
Additionally, we are grossly underrepresented on the “Interagency Serious Mental Illness Coordinating Committee,” with only two representatives on a committee of more than twenty people.
We were thrown the proverbial bone with the following two inserts: “…increase meaningful participation of individuals with mental illness in programs and activities of the Administration,’’ and ‘‘…through policies and programs that reduce risk and promote resiliency.” Yet in the context of the bill’s relentless drive to replace recovery with the medical model of treatment and promote coercion, these two phrases have little meaning.
We are the citizens most directly impacted by the policies enacted in Congress. We bear the brunt of all things that go wrong with those policies. We are uniquely qualified to provide meaningful input, and we speak with the benefit of hindsight based on our actual lived experience. Any social policies developed without significant input from people with lived experience defy the basic tenets of democracy.
The Bill Expands Grant Funding and the Timeframes for Assisted Outpatient Treatment Robert Bernstein, executive director for the Judge David L. Bazelon Center for Mental Health Law, provided testimony to Congress regarding Assisted Outpatient Treatment (AOT) several years ago, which began with the following: “The term ‘assisted outpatient treatment’ (AOT) is like calling robbery ‘assisted wealth redistribution’ and is more appropriately called involuntary outpatient treatment.” Indeed, the term robs the layperson of reality before the description of this abrogation of rights even begins.
HR 2646 extends and enhances existing federal grants that encourage states to expand coercive, court-ordered outpatient treatment programs. These programs of forced treatment do not help people get better. Further, AOT inserts the court system into decisions that should be between individuals and their treatment providers, while adding unnecessary costs. Ultimately, AOT discourages people from voluntarily seeking help using services that work for them.
HR 2646 Significantly Weakens the Substance Abuse and Mental Health Services Administration HR 2646 provides a blueprint for the systematic disempowering of the Substance Abuse and Mental Health Services Administration (SAMHSA). The bill creates the new position of Assistant Secretary for Mental Health and Substance Use, which requires either an MD or a PhD in psychology. The insertion of medical authority over SAMHSA would be a huge step backward to institutional policies and models.
One of SAMHSA’s greatest achievements is its instrumental role in promoting recovery in ways that have helped thousands people across the country.SAMHSA has promoted and funded major innovations such as peer support, trauma-informed care, recovery oriented systems of care, and state consumer and family networks, all of which have yielded positive outcomes while being extremely cost-effective. These programs would be jeopardized by HR 2646.
Representative Murphy’s continued focus on disempowering SAMHSA is deeply troubling. Though HR 2646 may have been penned by Representative Murphy, it is clearly the bidding of Dr. E. Fuller Torrey, a longtime proponent of involuntary inpatient commitment, outpatient commitment and forced medication. Despite the criticisms of Rep. Murphy and Dr. Torrey that SAMHSA promotes activities that are not evidence-based, SAMHSA has published on its website a compilation of no fewer than 31 resources and links to evidence-based programs and practices.
HR 2646 punishes SAMHSA for partnering with and respecting the dignity of people with lived experience. We reject this attempt to undermine the very entity within the federal government that has provided leadership in actualizing the most fundamental, core belief of mental health consumers – recovery.
HR 2646 uses “anosognosia” as a rationale to relax confidentiality issues and promote forced treatment To be honest, this issue IS A DRAG. I have received a great deal of pushback on this, because anosognosia is impossible to pronounce, much less explain. But it is vital. Please, push through your revulsion, for the sake of untold thousands of others who need you. Make yourself understand this important piece of information.
Section 401 of the HR 2646 would establish a “Sense of Congress” using a definition of anosognosia to study how best to wiggle around HIPAA in order to violate the confidentiality of people with mental health conditions. It is described as a condition in which individuals “lack the awareness they even have a mental illness.” Anosognosia can be found in the literature associated with people who have had strokes and brain injuries. It basically describes a condition in which a person is unaware that they have paralysis in parts of their body. It is a TEMPORARY condition, and it clears up without the use of medication. Further, according to Dr. Danica Mijovic-Prelec, a researcher in neuroscience, "patients with anosognosia, or denial of illness, are [still] able to process information about their condition."
Anosognosia is highly controversial because it was “borrowed” into the MH field specifically to justify forced treatment. But how can the above condition described for stroke patients be remotely the same for individuals with mental health conditions? The “science” is a sham. Can neuroscientists attest to this application to people with “mental illness”? No. There is no actual scientific evidence to support the existence of anosognosia in mental health populations. But Congress is not comprised of experts in research. And they have been convinced to rely on phony research by experts in public relations, not science.
HR 2646 suggests that people with mental health conditions have worse “compliance with treatment” than others. In fact, there is substantial research showing that people diagnosed with mental illness are able to make reasonable decisions about their care, on par with others who have chronic health conditions.
Allowing such language into a “Sense of Congress” legitimizes junk science and provides a rationale for violating confidentiality and the deprivation of civil rights. It also sets a dangerous precedent for future legislation that will promote forced treatment measures. This must be struck from the bill.
The Bill is Hostile to Programs and Concepts of Recovery In writing and promoting this bill, Representative Murphy has relied heavily upon the work of Dr. Torrey. HR 2646 is steeped in language that attempts to justify coercion and the stripping of rights of people with mental health conditions. Over the course of the past four decades, Dr. Torrey has established a reputation as an extremist and an ideologue. He does not believe in recovery. He wants Congress to believe that people who “deserve” mental health services are “too sick to know they are sick…” and those who do not exhibit the most severe behaviors associated with “illness” are a waste of money. It is a warped, binary vision bereft of hope – those who need to be coerced, and those who neither deserve help nor a place at the table of policy decisions.
There is no support for recovery-based programs in HR 2646. It is strikingly absent from the bill. In fact, the bill calls for the “DIRECTOR OF THE CENTER FOR SUBSTANCE ABUSE TREATMENT … [to] work with States, providers, and individuals in recovery, and their families, to promote the expansion of recovery support services and systems of care oriented towards recovery.”
There is no similar language for mental health. We must ask why the principle of recovery in mental health is not supported in HR 2646, especially in light of unfettered support for recovery among individuals with substance use disorders.
Why is it impossible to believe that people can actually get better? A better question would be to ask why our members of Congress have bought this ugly deception.
Inpatient care cannot and should not replace preventive care in the community We do not support the expansion of Medicaid funding for Institutions for Mental Diseases (IMDs) or other inpatient settings. This is often referred to as “loosening the IMD exclusion.” Increased funds for hospital care means continuing to support the unacceptable status quo, and advances the agenda of forced treatment in the absence of decent voluntary care.
The current lack of adequate community support has created a mental health system that is crisis-driven. It provides too few services that are too late and that result in unnecessary and coercive means of treatment. In addition to causing needless suffering, continued/increased funding for inpatient settings ultimately supports the most expensive form of care possible at the far end of the continuum of care. The inevitable result is rationing. Thus the cycle of crises continues unabated. It is the equivalent of offering intensive care as the sole treatment of choice for people with heart conditions.
Since the 1990’s, state after state has attempted to close psychiatric hospital beds and “reinvest” the funding into community care. And yet, once the funds were transferred to the community, they became vulnerable to funding cuts, especially in the face of economic downturns. We have lost more than $4 billion alone to the Great Recession of 2008. OF COURSE PEOPLE HAVE GONE INTO CRISIS. It is outrageous that we have an entire nation that blames the victims of such shameless public policy with more of the same.
The mental health crisis that the United States is currently experiencing is directly related to a collective lack of will to fund and sustain decent community care, at both the state and federal levels. Beds were closed, yet hospitals remained open for business as usual for decades. Later on, beds were closed with tremendous efforts among advocates to create community care, yet the money evaporated with each economic downturn.
There is no right to community care. There is only a “right” to “treatment” once you have lost your liberty. Who is not thinking clearly here?
Critics argue that too many beds were closed, that inpatient care will always be needed, that HR 2646 is merely codifying recent regulatory changes made by CMS, and that we must address this urgent crisis now. But in relaxing the IMD exclusion to allow for 15 days each month of inpatient care, we will lose vital dollars that we will never get back for community care. Never. The proposed federal funding for IMDs is “de facto” replacement money for lost state dollars that will be relocated to the wrong end of the system.
One consistent theme of our opponents is that psychiatric hospitals are better than jails, prisons or the streets. This is a false choice that should be revolting to millions of us throughout the country. Why isn’t community care seen as a better option over all of the above? The message is one of deep disrespect and discrimination for people who need mental health services. People of good conscience have been misled. Those who have misled them have a mighty war chest and wear a deceptive mantle of “truth-i-ness,” as Stephen Colbert might have said.
Conflating gun violence with mental health conditions HR 2646 is a direct result of the Sandy Hook tragedy. It was a tragedy so horrendous that the entire nation was traumatized… except, of course, for the NRA and the proponents of coerced MH treatment, who were gleeful to find an opportunity to spread their poison. Since that horrible day, and with each subsequent mass shooting, people have struggled to find an answer; something, ANYthing that will keep us, especially our children, safe.
Despite research that consistently shows that only 4% of all violence in this country is related to mental illness, people with mental health conditions have been scapegoated. The truth is merely a distraction. Japanese Americans were interned during WWII because the government and the public KNEW they were a dangerous population. We now know better. But in the frenzy to react to tragedies of historic magnitude, it is easy and predictable that vulnerable people will be blamed and have their rights violated. The Japanese Americans were ultimately freed. Can we say the same about people who will be forced into hospitals? For more information about violence and mental illness, click on Mental Illness is the Wrong Scapegoat After Mass Shootings and Untangling Gun Violence from Mental Illness.
The Myth of Hospitals Being the Answer Deinstitutionalization came to pass, in part, with the sobering recognition of a national shame. Psychiatric hospitals are inherently coercive. Period. Conditions in psychiatric hospitals easily devolve into egregious snake pits. It is as true today as it was in the 1950’s. Erving Gottman wrote a seminal book about conditions in psychiatric hospitals, entitled Asylums: Essays on the Social Situation of Mental Patients and Other Inmates.
The Department of Justice is still investigating hospitals and legal action is still needed too often to remedy abuse, neglect and unnatural deaths. Additionally, increasing hospital beds flies in the face of the The Supreme Court’s Olmstead decision. It is unwarranted segregation, not integration.
The following link to an investigation of a Florida hospital is merely one example of how sadistic and shocking inpatient hospitals can become. It is a damning statement of the medical model.
The Failure of Deinstitutionalization Deinstitutionalization was passed into federal policy in 1963, at a time when the United States was the Land of Camelot. This landmark legislation was driven by the civil rights movement, the advent of psychotropic medication, which was thought to be the magic bullet for treating mental illness, and the exposure of egregious conditions and the warehousing of hundreds of thousands of citizens. In 1961,
The Community Mental Health Act was passed by the 88th Congress. It was never adequately funded. This landmark legislation represented the beginning of deinstitutionalization. However, states saw it as an opportunity to close beds without having to relocate the funds in the community – quite a windfall for state budgets, for a period of time. In fact, over 90% of all state hospitals were closed as a result of deinstitutionalization.
This is the true crux of the problem we face with mental health care in the United States. It is not a problem of “undeserved” rights; it is a problem of inadequate resources that are poorly allocated. It is not only illogical and inhumane, but is also a very poor investment of public dollars. Hospitals represent the most expensive form of mental health care. It makes no sense to create a system around inpatient care.
We, the people with lived experiences that are SPECIFIC to the policies of deinstitutionalization, have made significant discoveries about how to help people with mental health conditions. And, we have found that those with lived experiences, much like those of people who have struggled with addictions, can have a profoundly positive impact upon people who need mental health supports. People who have been there understand what it is like for people who ARE there.
We have developed peer-run respites that help divert people in crisis from inpatient care. We have developed peer support specialists, forensic peer specialists, recovery coaches, self-education programs and more. We have found models that facilitate open communication among individuals, families and providers from other countries that are highly successful, such as Open Dialogue. Housing First models show clearly that mandating “treatment” before housing is folly.
These are troubling times for people with lived experience in mental health care. More than 50 years after deinstitutionalization, mental health systems across the country are still unable to provide the appropriate care in the community that was promised long ago. We must ask ourselves why this is so, and we come back to the fundamental issues of stigma and discrimination. We are different. Yes, we know. But does that justify withholding help in the face of massive suffering? Does it justify a punitive, coercive system of care that dictates without listening? Does it really justify violating the rights guaranteed to all citizens of the United States under our Constitution?
Time and again, research has proven that the public perception of the relative “dangerousness” of people with mental health conditions is unfounded. Sensationalized, distorted media coverage has fueled arguments for forced treatment and an overly medicalized system of care. The march toward re-institutionalization and coercive care is abhorrent to us. Having a mental health condition does not constitute a life sentence to poverty, marginalization, aberrant behavior or an inability to become a fully functioning citizen who can contribute meaningfully to his/her community. We know that recovery is possible because we are the evidence.
It has been 53 years since deinstitutionalization began. We are still waiting.
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Valerie L. Marsh, MSW, is Executive Director of the National Coalition for Mental Health Recovery (NCMHR). Marsh received both her bachelor’s and master’s degrees in social work from Virginia Commonwealth University in Richmond (VCU), Virginia, where her graduate studies focused on mental health policy, administration and planning. She served as an adjunct faculty member at VCU, teaching policy, advocacy and human behavior to graduate and undergraduate students in social work. As the Executive Director of NAMI-Virginia from 1994-2004, Marsh shown a spotlight on abuse, neglect, and unnatural deaths in Virginia’s public psychiatric hospitals.
Is the time right for Next Generation Advocacy? Currently, there are several mental health reform bill proposals in the House and Senate working their way toward merger into a bill that, increasingly, looks like it might pass. The conversation about mental health reform in Washington, DC has been driven primarily by advocacy leaders inside the beltway. These leaders are undeniably well versed in the inner workings of the legislative process, understanding the nuances and give and take of compromise. Their influence with congressional leaders carries significant weight in deciding what gets included in a particular mental health bill and what does not.
If you look closely at the current mental health bill that just passed the House (H.R. 2646), it is clear that mental health reform models only your grandfather could love (reliance on hospitalization, focus on “after-the-fact” treatment), still rule the day. There is an active component of the advocacy community that seems to want to “Make America Great Again”, wistfully remembering how the national mental health service delivery system was 40 or 50 years ago. Only one problem – resuscitating old models from a time when there were only three television networks, models that really should have a D.N.R. tag on them, ultimately won’t work in an American landscape that is vastly different in the year 2016.
Why is it that so many national advocacy leaders choose not to address the antiquated mental health reform approaches being touted by the architects of current legislation proposals in Congress? Is it because they, too, rely on mental health reform models of the past? Do they lack vision and innovation?
The answer, as is often the case, is not an easy one. Some of our most prominent advocacy leaders will be wildly inspirational and innovative until they are ready to pass on to that great mental health reform cosmic discussion in the sky. Others, however, seem to have taken a different path, holding on tighter and tighter to beliefs and approaches that served them well in their prime, but are increasingly becoming out of touch with the realities of today.
As old leadership passes on, vacuums are created, just waiting to be filled by innovators who bring fresh, new ideas to help stimulate or replace old and tired approaches to mental health reform. I am convinced that we are on the precipice of a radical change in what advocacy leadership looks like for the future. There is much innovation taking place in communities across America right now. These innovative activities may not get the press that older, more traditional efforts do, and certainly are not getting attention or notice in legislative language. However, make no mistake, they are happening, they are making an impact, and they are setting the stage for what comes next.
It is time for an infusion of Next Generation Advocacy.
Martin Rafferty – Next Generation Advocacy leadership personified One of the most exciting examples of a Next Generation Advocacy leader is a young twenty-something CEO by the name of Martin Rafferty. Martin is the CEO and founder of an organization called Youth M.O.V.E. Oregon (YMO). This dynamic organization utilizes numerous evidence-based practices in their service delivery model. Their work is solely focused on working with emerging adults. Martin and his team of innovators at YMO are rewriting the playbook when it comes to addressing trauma, understanding the needs of emerging adults, and moving forward with cutting edge technology to reach youth in ways that most national mental health advocacy leaders haven’t even begun to grasp. Here is how Martin and his team are doing this.
Next Generation Advocacy leadership in action – School Shootings On June 10, 2014, at Reynolds High School in Troutdale, Oregon, a 15-year old student, armed with an AR-15 rifle, shot and killed a 14-year old freshman, and wounded a teacher before turning the gun on himself and taking his life. The shooting occurred on the second-to-last day of the school year.
After the initial wave of community response, attention to the shooting and its aftermath quieted down a bit. But, as summer moved on and the next school year approached, the thought of coming back to school, where significant trauma had been inflicted two short months before, weighed heavy on students, faculty and community providers alike.
Rafferty and his team from YMO had an idea. What if students had an opportunity to reconnect with the school building? In an interview with the Oregonian, Rafferty explained that “the Schools often bring in a therapist or point students to local mental health services after a shooting, and almost always host a candlelight vigil.” Rafferty went on to say that what was needed was an opportunity for the students of Reynolds High School to be able to reestablish positive feelings about the school building with a fun event and provide easy access to peer support specialists.
The shooting happened at the end of the school year, leaving students without time to reestablish normalcy or a sense of community in the building. “While they’re sitting at home, the high school is becoming this demonized, big subject in their minds,” Rafferty said. “We want to create an environment where youth can have a positive experience. “It’s not about the shooting. It’s about: ‘This is your home. This is where you belong in the community. This is a safe place to be, and there are a lot of positive things possible here.’ We want to remind them of that.”
And thus, the “Virtual Reality and Ropes Course” was born. The course was designed as a fun and interactive welcome back to the school; students were invited to experience cutting-edge technology like Google Cardboard and other interactive 3-D gaming devices. As students engaged with technology they likely had never seen before but only read about, peer-support specialists were at the ready to talk.
The response by students and administrators alike was overwhelmingly positive. Rafferty thinks this approach could become part of a national model for post-traumatic student care. Rafferty believes the country needs a model to help young people process school shootings and move forward in a healthy way.
Fast forward to October 1st, 2016. Umpqua Community College (UCC) unfortunately experienced a mass shooting resulting in nine deaths and nine wounded. Youth M.O.V.E. Oregon’s crisis response team, made up of young adult peers, was on site providing support to students and community members from day one. This was a national breakthrough for crisis response teams who historically only include dispatch first-responders and clinicians. YMO immediately implemented an emergency youth drop-in center and has been providing on-site services ever since.
Rafferty and his team at Youth M.O.V.E. continue to refine their innovative technology-driven approach to post-traumatic student care, and are expanding the use of this technology to other arenas as well.
Martin Rafferty’s Next Generation Advocacy leadership extends beyond the innovations in school-trauma response. With Rafferty’s laser-focus on the critical importance of pairing innovative technology and mental health, Youth M.O.V.E. Oregon has figured how to inspire and engage emerging adults.
Over the last six years, the organization has trained over 26,000 people in 24 states. Their Facebook reach exceeds 625,000 active readers, and YMO peer support specialists provide more than 7,500 hours of peer support to transition-aged young adults each year. Early this year, YMO announced their national technical assistance (TA) program: Youth Program Builder. A program created to provide assistance, training, and support to agencies across the country. The program has had much success, having already consulted organizations to open three youth centers successfully thus far, with more in the works. In addition, YMO has implemented a national leadership program for youth called the Empowerment Recovery Academy.
Accolades and awards continue to come in for Martin and his team at YMO. Readers are encouraged to visit the YMO website to learn more about their amazing work.
Next Generation Advocacy leaders like Martin Rafferty don’t wait for language that reflects their work to be inserted into legislation, they just create it, find a way to fund it, and implement it.
Next Generation Advocacy leaders like Martin Rafferty don’t base their work on what federal grants dictate as best practice or suggested approach. Next Generation Advocacy leaders are artists and innovators at heart. They articulate an innovative vision, find a way to fund that vision, and implement it.
Thank you Martin Rafferty for being a Next Generation Advocacy leader.
The way we think of advocacy in mental health, which at its core is about pushing innovation, is changing. You may not know it or see it just yet, but trust me, it’s coming. And sooner than you think, the innovations these Next Generation Advocacy leaders are implementing will be cropping up in federal legislation bringing true reform to the mental health service delivery system in America.
Can you feel the tremors?
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Scott Bryant-Comstock President & CEO Children's Mental Health Network