What Behind The Wall Parents Know About Community SafetyPosted: September 13, 2020 Filed under: Uncategorized | Tags: addiction, addictions, Behind The Wall Parents, bipolar, brain disorder, caregivers, Crisis Intervention Training, dual diagnoses, family support, manic episode, mental illness, mental-health, Parenting, Police training, psychosis, schizophrenia, serious mental illness, substance abuse 4 Comments
For years, Elin and I have been talking about realistic fears of parents whose adult children live with a serious mental illness. Sharing these fears helps parents know they are not alone.
Fearing that their child will become a victim of violence or self-harm is realistic. We’ve cited before that a person who lives with mental illness is statistically more like to harm themself than others. A parent once told us that when their daughter was unwell, she’d wander out into the night, wanting to help people. A young woman, incoherent, wandering into the park in the middle of the night is at risk.
Unfortunately, victimization of people experiencing psychosis is often, and documented, at the hands of police officers who are not adequately trained to de-escalate situations involving a person experiencing delusional thinking. Over the years, we have posted a few blogs on this very subject including these two:
Dad! Dad! On Being Helpless to Protect Your Child
Statistics Don’t Tell The Whole Story About Mental Illness and Violence
On March 23rd, Daniel Prude was experiencing delusional thinking. Mr. Prude showed up at his brother, Joe’s home in Rochester, New York and was checked into a hospital but soon released–a scenario we have also heard retold by parents all too often (and discussed in this post from 2016)
The Prude brothers returned to Joe’s home and enjoyed a few hours together. But Daniel left the house and disappeared into the night. Joe searched for Daniel but couldn’t find him. Knowing that Daniel was not thinking rationally, he called the police for help.
In the body camera video of his arrest, Mr. Prude is naked, face down on the pavement, light snow is falling and there are at least five officers including the camera-wearer. Prude is ranting, but not violent. He is obviously delusional, speaking but not making sense. Prude speaks crudely and also praises god. He is cooperative when he is cuffed. At some point, an officer notes that he’s been out in the cold, naked, for at least 30 minutes. No one makes any gesture to put something around him to keep him warm. The officers stand around, watching him from a distance, ostensibly, awaiting an ambulance. When he tries to sit up, an officer tells him to stay down. At some point, an officer asks Prude if he has HIV. Officers are heard laughing at him. Prude starts to spit, not in the direction of anyone. An officer puts a “spit” hood over his head, which changes Mr. Prude’s affect and he becomes visibly and audibly more agitated. Only one officer is wearing a mask.
After the hood is put on him, he becomes agitated and he is pushed to the ground. It is during this time when his oxygen is cut off, causing his pulse to stop. An EMT revives him, but he ends up in the hospital, on life support. An autopsy report confirms he suffered asphyxiation during the arrest and was brain dead by the time he arrived at the hospital.
Mr. Prude was delusional, but he was not acting violently toward any of the officers. He can be heard saying, “Give me your gun. I’m going to kill yall” and praising god. With four officers, his hands cuffed and naked on the ground, the scene was contained until he started spitting. Even so, he wasn’t spitting at anyone.
To say that there is no other way but to use force to handle situations like this is factually incorrect. Elin and I both live in communities where police officers are trained to de-escalate situations involving individuals experiencing delusional thinking. We’ve witnessed officers handle a delusional person with calm and patience. In fact, in my town, there is an officer dedicated to helping with the nearly 90 percent police calls that are strictly mental health-related altercations that are resolved through de-escalation tactics.
Parents who have an adult child experiencing psychosis often need help to make sure their child is safe. In many cases, a psychotic person runs away because they are afraid. Their brain is churning strange and scary thoughts. Tessa often fears that her son, Riley, will encounter an officer who is untrained in de-escalation. Once, in an adjacent town, a friend of Riley’s was psychotic and killed by an officer. A slight young man, he was not carrying a weapon.
Joe Prude is quoted as saying, “I called the police for help but that was the wrong thing to do.”
For years, we’ve been telling parents that if they need to call the police for help with their loved one, request an officer who is Crisis Intervention Trained—A CIT officer. This designation can save a life. If your local law enforcement doesn’t have crisis trained officers, lobby your civic leaders to insist on it in the next budget review. It can save a life.
We’re not being political. We want to lobby for what we know can save lives. Mental illness doesn’t care about political affiliation. People experiencing psychosis can be helped and parents want them treated with dignity.
For a full accounting of Mr. Prude’s case, including audio:
The (other) kids are all right… Or are they?Posted: October 30, 2017 Filed under: Uncategorized | Tags: advocate for sibling, Behind The Wall Parents, bipolar, bother with mental illness, brain disorder, brother, caring for my brother, caring for my sister, caring for sibling, dual diagnoses, family support, mental health advocacy, mental illness, mental wellness, Motherhood, Parenting, parenting help, parents, schizophrenia, schizzoaffective, serious mental illness, siblings, sister, sister with mental illness, substance abuse Leave a comment
In our story collection and book, Behind the Wall: The True Stories of Mental Illness, as Told by Parents, the parent-contributors offer advice and talk in-depth about the emotional journey—rife with grief— that defines their experience advocating for a child with a persistent mental illness. As heartbreaking as it is to watch their diagnosed child suffer, parents also acknowledge the pain their “well” children endure. At almost every speaking engagement for our book, we are asked, “What about the sibling(s)?”
Parents tell us that their children, who are the siblings of a chronically mentally ill person, grieve deeply. There are several sources of a sibling’s grief. Shifting dynamics within the family is a significant factor. In a typical scenario, a very ill child with immediate and all-consuming needs hijacks parental attention while other children are inadvertently ignored. Parents typically focus on the child who constantly gets into fights, has run-ins with the law or is abusing substances. Meanwhile, a sibling may be quietly suffering without acknowledgment. Kids need to know a parent is emotionally available, which is not necessarily the case when another child is in crisis.
Though one child’s emotional health may be the most grave, all children need support. In fact, the whole family unit needs support. But sadly, grieving parents, who are also in triage mode, may be temporarily incapable of recognizing and/or providing for the emotional needs of their other children. Parents admit they were even unaware of their own grief while experiencing it. Most worrisome is that a young person’s unchecked grief can develop into more serious health issues later.
Such was the case for Kerri, whose son, Tomas, is prone to rages. When he doesn’t get what he wants, she says, he threatens to break things and then does it. His behaviors ruin special times for her daughter and make it uncomfortable to have houseguests. Kerri says her younger daughter had “enjoyed the time when Tomas was away at college. She had felt free to bring friends around, not worried her brother was going to do something weird” (qtd. in Widdifield and Widdifield 44).
Tomas’s all-consuming illness draws attention from his younger sister’s needs due to his demands, anger, and the way he often puts himself in harm’s way, creating one crisis after another. Tomas’s destructive behaviors and the resulting stress in the home, Kerri believes, have affected her daughter’s health.
I’ve always felt he’s ruined things for his younger sister. Here we are, trying to look at colleges and had planned a whole weekend… Our daughter, who’s a great kid and good student, was having health problems, and I always wonder if it was connected to the stress of her brother’s illness and all the uncertainty he has caused. She was first diagnosed with Lyme disease then later with chronic fatigue syndrome with fibromyalgia. We’ll never know her diagnosis for sure, but she became depressed from not feeling well, always feeling tired and run down, and it finally got to her. (qtd. in Widdifield and Widdifield 47).
When Tomas is at home, Kerri says, the family often feels as if they are “walking on eggshells.” Their home is not always a place of calm and peace because of Tomas, clearly not an environment conducive to entertaining friends much less healing.
In another scenario in which parental attention is diverted to the child who is acting out, siblings may subsume their own problems for fear of causing their parents more heartbreak. But unaddressed or unresolved emotional issues can bloom into larger problems. Still, other siblings use the shift in attention to engage in risky behaviors while remaining under the diverted radar of parents who are emotionally and logistically consumed.
Grief also derives from siblings feeling that they have “lost” their bother or sister to the illness. A person with a brain disorder often suffers cognitive (and personality) changes that may be permanent. Sometimes there is memory loss. It is bewildering to all family members and siblings that their brother or sister creates so much trouble and refuses to follow basic rules they once could understand; or that behaviors that are not tolerated from any other family member are excused for the “ill child.” Children are understandably angry with a sibling who creates unnecessary drama and seems to ruin every family event—from birthday dinners to vacations.
Sadly, a young person can’t often escape the impact of their sibling’s behaviors through supports outside the home, either. The stigma of mental illness means that a loved one’s health challenges are not usually disclosed to extended family or close friends for fear of being judged or, as one parent says, because others “can’t possibly understand what I’m going through.” Parents know that because of the bad (sometimes bizarre) behaviors of their child whose illness may be undiagnosed or under-treated, their parenting is scrutinized by those who don’t understand mental illness. Other family members are scrutinized too.
Esme, a parent-contributor says that her daughter, Laura, suffered directly when attention became focused on Jennifer’s chaotic, raging behaviors caused by her mental illness. Laura, a naturally easy-going and upbeat person, was banned from the home of a long-time friend by his parents who believed she would become like her sister, Jennifer. Not only did the community conflate Jennifer’s behaviors with Laura’s, but also Laura’s emotional needs were subsumed by her sister’s volatile, demanding behaviors. Being misunderstood in one’s community is hurtful, especially for young people. About community judgment Esme says,
I was hurt, but there was no action I could take other than console Laura who had by then been affected more than once by the community because of Jennifer’s behavior. That’s what stung the most. At that time Laura was starting to experience depression, which was also crushing. We definitely never intentionally ignored her, but we did ignore her because we missed cues that could have informed us of her well-being, and we shouldn’t have. It was accidental because we were focusing 98 percent of our attention on one child. (qtd. in Widdifield and Widdifield 37).
Growing up with a sibling or any close family member known for disruptive behaviors can lead to feeling isolated from one’s community. This isolation compounds the grief of “losing” a loved one to a brain disorder, especially when friends and community don’t acknowledge loss or recognize support is needed. A brain disorder, as many know, is not a “casserole disease.” Yet, all loved ones, including the person living with mental illness, suffer from a loss the relationships before the illness became symptomatic. As Bianca, a mother we interviewed astutely observes,
When a person has a brain disorder it’s traumatic for the family, like experiencing a death. If Miguel had been in a car accident and had brain damage, everybody would have enfolded him. The loss [his brother] Arturo felt about Miguel’s illness affected him the way I felt the loss and hurt of my divorce: if the man had died, I’d have gotten a card. Flowers at least. You are left with pain and grief that no one acknowledges. (qtd. in Widdifield and Widdifield 226).
Still, it’s important to know that families can heal and recovery is possible for a person living with a brain disorder. The grieving process represents progress, allowing for a “new normal” to bloom. Families of a person with serious, chronic mental illness are forever changed but they don’t have to remain broken. First, parents need to take care of themselves in order to support their children. Parents like Esme also recommend spending one-on-one time with each child to strengthen the parent-child relationship. Though creating that “normal” one-on-one time with other family members requires some work at first, it doesn’t have to involve complicated plans. Says Esme,
I’ve been learning to have balance and spend more time with Laura when her social schedule allows. When she was taking driver’s education I’d spend time in the car with her. We take moments. “Let’s go have dinner, just you and me.” Or, “Let’s go driving for an hour and stop along the way and go into shops . . .” Anything to steal a moment so she feels connected. (qtd. in Widdifield and Widdifield 37-38)
Even as adolescents and young adults rebel or seem to rebuff parental attention, children do need time with their parent(s). As another parent recommends, find something, anything that your child likes to do and share that activity. “Maybe it’s crochet,” he says. Many families do find fun activities that involve every family member to help heal relationships and reach a ‘new normal.’ Activities can be simple, such as hiking, biking, playing a board game, working a puzzle together or watching a movie at home. Start with something small if that’s what it takes.
Siblings need time to heal from their own journey grappling with “losing” the sibling they knew, escaping the chaos the illness creates in the home and/or accepting their loved one’s mental illness. Siblings may escape or lose regular contact with the family for short-term or long-term. In some cases, the sibling relationship becomes (or is deemed) irreparable, even toxic for one or both persons. For others, siblings come to an understanding and may even be drawn closer. Having shared joyful, meaningful early years together can determine the long-term relationships between siblings and those who understand mental illness, usually become in awe of their loved one’s strength to manage it.* Many siblings we met became the compassionate, adult healthcare advocates, managing their own journey loving and supporting a person with a chronic brain disorder.
No matter what the scenario, the journey of the person whose sibling lives with a serious and chronic mental illness must be acknowledged.
We recommend finding support at your local National Alliance on Mental Illness (NAMI) affiliate and participating in the free twelve-week Family-to-Family course to learn evidence-based information on mental illness, how to communicate with your loved one and about healthy self-care. NAMI was a resource many parent contributors found to be helpful in their journey.
*For an example of sibling compassion and understanding, please see our March 20, 2014 guest post from Michael Ross about his sister Michele, Eulogy for Michelle: Defining the Success in My Sister’s Life”
If you would like to share your story, please connect to us privately through this website or private email at: mwiddi [at] yahoo.com. Identity of contributors remains anonymous to protect family members.
Of course, we welcome any comments:
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Honoring Mothers: Keep it Real.Posted: May 10, 2017 Filed under: Uncategorized | Tags: Behind The Wall Parents, bipolar, brain disorder, caregivers, family support, gratitude, mental health advocacy, mental wellness, mental-health, Mother, Motherhood, Mothers Day, Ronie Woodlief King, schizophrenia, schizzoaffective, serious mental illness 3 Comments
The subtext of my father’s life and what bled into the four lives he created was the untimely death of his mother from blood poisoning sixteen days after his birth on Christmas Eve, 1931. From all accounts, which are too few, our grandmother was a firm but warm matriarch who managed her brood of nine surviving children with benign militancy and efficiency, keeping a clean and orderly house during the strained years of the Depression.
My siblings and I know Ronie Woodlief King through brief moments with three of our father’s sisters, one of whom was twelve at the time of her death, and from a single brown and white wedding photograph that rested on our piano throughout our childhood. Copies of this portrait, with its jagged creases, have been distributed to the many descendants of Ronie’s ten surviving children and now reside on walls, mantles and tables—maybe shoved in drawers—mostly in North Carolina but also across the country. We always said my oldest sister, Elin, shared a remarkable resemblance to Ronie. Her husband, my grandfather, passed only seven years after her and resembles my father. They share a sweet, youthful expression that belies their later heartbreak.
Despite never meeting this biological grandmother, her legacy profoundly marks us. From as early as I could remember, I saw an ineffable sadness in my father that I assumed was the grief in which my father’s early life was founded. Perhaps my earliest witness to his well of sadness was when I was about five and he began weeping while we watched Bambi together. In one narrative about my father’s first days, he lay crying in his bassinet in a soaked and soiled diaper until his oldest sister, Doris, who, at eighteen, was managing chores and caring for the youngest children still at home, could eventually care for him. It was then that neighbors, who had just lost their own baby, took the motherless infant into their home until the family could properly care for him. Later, this family adopted him, a truly charitable act during the Depression. Because I’m the youngest, what I know of my paternal (non-biological) grandmother, who took my father in and raised him, is that she made memorable pimento cheese and kept a clean home.
There is no other relationship that defines a person’s life the same way as that between mother and child. Adopted parents not excluded here, but in my father’s case, he and his descendants were indelibly marked by the loss of their biological mother. Maternal love is fierce. It’s why I always tell my children as I drop them off downtown or at a friend’s home, to always inform me when they change locations. In an emergency, no one will fight harder to find them than their mother.
Ronie’s impact on her youngest children and grandchildren is discoverable in what was created by her absence. My sisters and I have broadly speculated about what kind of parent or grandparent she would have been and believe she watches over all her children and their children. I imagine she likely had great pride managing home and children. I wonder if she was humored by her bright and funny children. I wonder about the moment she recognized her imminent death and that she was leaving behind an infant and young ones as well as older children. Heartbreakingly, she was robbed of the luxury to be annoyed by her two youngest boys, my father and his brother Julian, when they got into trouble or talked back or didn’t come home in time for supper. She was robbed of opportunities to catch her teenagers, Rachel, Mildred and Helen sneaking out with boys at night or rolling their eyes in teenage disgust behind her back. She didn’t get the chance to yell something at them that she’d later wish she could take back. I wonder, did she, or would she, have complained about all those damn kids?
The mothers that tell their stories in Behind the Wall have been pushed to limits no parent should ever experience: seeing their child suffer without being able to help them and sometimes watching their child walk the brink of life and death.
Elin and I have interviewed many mothers who have adult children living with serious mental illness. Similarly, these mothers have, at times been robbed of the typical things – of having “normal” moments, experiencing typical behaviors. It is not surprising that, with a similar power as Ronie’s legacy, the stories from mothers we interviewed, profoundly altered my perspective on mothering.
Each one of the mothers we interviewed stressed the importance of being supportive and emotionally available to their child, even when that child showed no reciprocation or appreciation, a common feature of the parenting dynamic, and especially common for adult and teenage children living with untreated mental illness. But we found it somewhat surprising that nearly every mother expressed regrets for some action or inaction. Many admitted having believed at one time or another that they caused the onset of their child’s illness, even though intellectually, they know brain disorders are not caused by bad parenting. These mothers wonder if they could have done something different when they were pregnant; maybe they should have disciplined more. Or less. They have a hard time freeing this false guilt.
These mothers in our Behind the Wall story collection, women like Esme, Tessa, Nathalie, Bianca and Rebecca, admit mistakes but also, through an oft-times harrowing parenting journey, have come to understand how little control they really have. They understand that parenting takes them for the ride and that they have less control in where the journey will take them as much as how they respond.
The mothers that tell their stories in Behind the Wall have been pushed to limits no parent should ever experience: seeing their child suffer without being able to help them and sometimes watching their child walk the brink of life and death. And then there is the grief of losing the child you once knew to a brain illness. Having been through all that, they can finally acknowledge they are remarkable mothers. They come to know that mothering cannot be perfect but mothers do make an impact, even in absence. As more than one mother expressed it, no one will take care of my child and advocate the way I do, and will.
When a child is unwell, often it’s the mother who has the power to keep things “real,” and maintain a sense normalcy while simultaneously pushing towards recovery. Bianca tells us that even when her son was very sick, living at home with her, unable to go to school or work, she tried to “keep it real” with him. Sometimes this meant yelling at him, getting angry with him like a mother would with any typical young man. For example, after coming home from work to find her house a mess, she said to him,
“You’re not broken! Pick it up! I work too hard to come home on my days off and clean up this house!” As soon as I raised my voice, which at the time didn’t seem like a bad thing to do even though now a part of me knows I shouldn’t yell… I felt guilty about getting angry. But on the other hand, “Pick up your dirty dishes!” He’s not broken. He’s tougher than he looks. (Behind the Wall: The True Story of Mental Illness as Told by Parents, 71).
For a mother who has spent years caring and advocating for an ill son, usually feeling as if she is screaming into the wind to get help for him, having a typical angry moment with him likely felt refreshing. But while getting angry or “losing it” isn’t ideal parenting, it happens. Tessa also admits to losing it on occasion with her son who binge drinks, gets into fights and has bouts of homelessness. But perhaps that’s the gift she is giving him – that she can show him anger yet he never doubts her fierce love or that she’ll be there for him.
Learning about the unfathomable struggles of mothers like those who have adult children living with mental illness, I’ve come to recognize that being able to treat a child like a “typical” child is a gift. The mothers in Behind the Wall parent on a whole different level than most and they are also far from typical. They are remarkable for their stamina, compassion and pragmatism. They understand a rule of life that took my grandmother’s legacy and my unfolding of it to learn: that we need to be grateful for each day given to us and particularly on those days when (especially) our children and loved ones are safe and healthy.
I will be the first to admit I don’t always feel gratitude for the parenting experience, particularly when a teen is ranting about something that pales in comparison to the struggles of, well, anything happening now in the world. Or when my child has been asked forty-six times to take out the now overflowing and reeking garbage. But underneath all of that, there is deep gratitude that I’m here. I may not be the best mother, but I am here. I’m the one that gets to advocate for my child and be on whatever that journey entails.
On this Mother’s Day, I honor mothers whose children have been unwell, in the past or currently, and who work hard to keep things “normal” or create a “new normal.” I honor my grandmother, Ronie, a woman I never knew, by keeping it real with my own kids. I honor mothers who act from a place of intention, make mistakes because nobody is perfect, and who understand the great fortune in each day we have with our children. I shall celebrate that I have been blessed with the luxury to sometimes become frustrated by my children and yet, they always know I am here for them.
As always, your comments and thoughts are welcome:
Mental health and Homelessness: address it early and broadly for a better community.Posted: October 4, 2016 Filed under: Uncategorized | Tags: addictions, Behind The Wall Parents, bipolar, brain disorder, ER, family support, homeless, homelessness, mental health advocacy, mental illness, mental-health, Parenting, psych ward, psychiatric patients, psychosis, psychotic, schizophrenia, schizzoaffective, serious mental illness, substance abuse Leave a comment
The following was, in similar form, published in The Marin Independent Journal. We thought we’d also share it here.
In well-heeled Marin County, staggering homeless statistics are visibly apparent in downtown San Rafael, near where I live. And this problem exists in urban areas across the country. The 20 percent, or 263 persons who are chronically homeless, cost the public greatly in emergency room visits, interaction with law enforcement, and incarcerations. In-depth media coverage reports that providing permanent housing and supportive services significantly reduces these costs.
Not clearly articulated are effective, holistic, long-term preemptive approaches. Largely because many don’t think the solution involves us. Or does it?
We know a myriad of factors lead to homelessness: environmental, economic, cultural, and bad luck. Brain disorders—also known as mental illness and includes substance abuse—is a leading cause of chronic homelessness. I bet all Marin’s overpriced housing that the 37 percent of homeless who self-report that they live with a “disabling condition” are underrepresented. Many also have anosognosia, a feature of serious mental illness that interferes with one’s ability to have insight that they are unwell. These individuals don’t accept treatment.
Fortunately, our city’s multi-pronged, reactive approach for current homeless includes a Police Department specifically trained for crises created by a person’s delusional thinking. A myriad of effective city agencies also support the homeless and those with brain disorders to reach independence. Still, a preemptive societal paradigm can address homelessness caused by brain disorders while strengthening community wellness.
It starts with knowing facts about mental illness and fighting stigma. Brain disorders don’t discriminate along ethnic or socio-economic lines. Bad parenting doesn’t cause mental illness either. One in five across the globe is diagnosed annually and an estimated 10 to 14 million Americans live with serious mental illness. Fortunately, brain disorders are treatable. But stigma prevents many from seeking treatment, which is devastating since early treatment equals greater outcomes. Let’s address brain disorders before a person becomes a statistic.
It’s cliché, but nurturing the whole child truly is a progressive investment in the whole community. We know that those lacking education are more likely to become low-wage earners and therefore statistically more likely to live on the margins.
Fostering youth wellbeing is possible through evidence-based programs in public schools. Initiatives fostering a healthy, inclusive school community can make the difference between a student feeling safe in his environment versus one who dangerously isolates. Adequate funding ensures reasonable mental health counselor ratios and also provides paid counselor training, psychological screenings for students, and most importantly that families can receive mental health education and support when symptoms first emerge. Brain disorders are lifelong illnesses that, similar to diabetes, for example, require ongoing management; with treatment, one can live fully.
Other youth programs foster wellbeing too. Studies show sports and enrichment programs promote healthy self-esteem and a sense of accomplishment. Feeling connected to one’s community, whether through sports, or clubs or other enrichment is critically important to young people. Engagement in positive activities reduces anxiety and depression disorder symptoms—possibly delaying onset for those at risk. Art, music, and performance arts provide students with beneficial life skills and tools for expression, valuable for us all, but especially for those who develop brain disorders.
Meditation positively alters brain structure, improves concentration and increases self-awareness, happiness, and acceptance. Schools with mindfulness and meditation curriculum have reported tangible long-term results.
Voters can also effect change by learning about HR 2646, the Helping Families in Mental Health Crisis Act of 2015 and lobbying their Senator to pass it. Importantly, this bill addresses critical roadblocks parents encounter in getting mental health treatment for their child. Presidential Candidate Clinton has also outlined a comprehensive Mental Healthcare Agenda proposing changes needed to guide a loved one from serious untreated mental illness to recovery.
It is likely your city’s many agencies and faith organizations are doing incredible work. If the long-term health of your community matters to you, consider getting involved with a school, an agency, or church; financially support relevant programs serving youth enrichment and intervention. Get informed, lobby your Marin County Supervisor and US Senator and vote. Because this is a big picture and we’re all in it.
Your thoughts are always welcome:
Is he at risk for harming himself or others?Posted: July 20, 2016 Filed under: Uncategorized | Tags: addictions, Behind The Wall Parents, bipolar, brain disorder, caregivers, Creigh Deeds, dual diagnoses, ER, family support, fatherhood, H.R. 2646, Helping Families in Mental Health Crisis Act of 2016, HIPAA, manic episode, mental health advocacy, mental health treatment, mental-health, Newly diagnosed with Mental Illness, Parenting, Pete Earley, psychosis, psychotic, Representative Tim Murphy (R-PA), schizophrenia, schizzoaffective, serious mental illness, substance abuse, Virginia State Senator Creigh Deeds 1 Comment
Jean did not delay taking her thirty-year-old son, Keith, a Medicaid patient, to a prestigious teaching hospital’s emergency room when he began experiencing heart attack symptoms. Jean, a lawyer, is the legal guardian of Keith, who lives with schizoaffective disorder that was diagnosed at age twenty. Jean knew Keith was likely experiencing a panic attack and the symptoms she was most concerned about were those of a mental illness relapse. Advocates like Jean, who have watched their loved one’s illness unfold, are intimately familiar with subtle and sometimes frightening warning signs of mental health relapse and what signifies the urgent need for an ER visit and hospital admission. On that day, Keith’s concerning symptoms included elevated mood, obsessive need to clean, racing heartbeat, and the most critical of all, incoherent speech.
Up until that ER visit, Keith had been managing his illness successfully for nearly four years with medication, therapy, sobriety and the support of his parents and loved ones. A recent college graduate, Keith teaches advanced math to high school students at an after-school clinic. He was recently promoted and had plans to move from his parents’ house into an apartment with a roommate. Stress can trigger a critical health event for those who live with chronic mental illness and Jean believes his increased responsibilities possibly caused his relapse.
The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided, or the fact that Keith is treated at the same hospital for his schizoaffective disorder.
Upon meeting the ER doctor, Jean detailed her son’s mental health symptoms she observed and knew to be concerning and his correlating health history. But the ER doctor focused on Keith’s cardiac symptoms, asking an incoherent Keith to explain how his heart felt. The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided or the fact that Keith is treated at that same hospital for his schizoaffective disorder. “The ER doctor couldn’t write the discharge order fast enough,” Jean says. She laments the breakdown in what should be an integrated health system, one that includes protocols in which doctors are trained to address physical and mental health symptoms.
Jean recognized Keith’s mental health was rapidly deteriorating and his ER discharge meant the opportunity to get him committed for treatment in the hospital was denied. Jean then called Keith’s psychiatrist, who was on vacation, and left a message for the on-call doctor. Several hours passed before she received a return call. In the meantime, Jean also had left a message on the answering service at the clinic where her son is treated.
When her call was finally returned, the usual and important question was asked: “Is he suicidal? Is he homicidal?” Keith was not expressing suicidal ideation though he was incoherent and clearly exhibiting signs of psychosis. But Keith does have a history of hearing command voices—voices that instruct him to do dangerous, impulsive acts. Jean explained, “No, he’s not saying he’s going to kill himself. But his thinking is becoming more convoluted and his mood is more elevated.” Despite Keith’s history, he did not meet criteria for being at risk for self-harm or harming others and therefore Jean was informed, “Have him call us tomorrow and get an appointment at the clinic.”
Jean was finally able to make an appointment for Keith early the following morning and prepared for a long night of vigilance, which was especially worrisome since her husband was away on business. Knowing Keith’s history of psychotic thinking, especially that he experiences frightening command voices, scares Jean. She would need to check on him frequently throughout the night.
Jean recalls, “The rest is a blur. About 1:30 am, I saw blood in the hallway. I banged down the bathroom door and stopped the bleeding as best I could. I called 911 and got help from my neighbors who are nurses. Before I knew it, Keith was in the first of two surgeries.”
Keith will survive but it will be a long recovery process, both physically and mentally. He told his family he wants to live, get well, and return to work. He tells his parents he had no plan to kill himself. Keith has no memory of that night. “I don’t know why I did it,” he says.
Keith’s psychosis involved hearing voices commanding him to act, nearly resulting in his own death. His act, unlike a conventional suicide attempt in which the intent is a conscious and often planned effort to end one’s own life, was unplanned and impulsive. Keith’s brain was very ill, requiring urgent treatment to stabilize disordered thinking and keep him and others safe. Had Jean been successful in getting Keith hospitalized, he could have been protected from this impulsive act that will now require a longer recovery than had he been committed to treatment merely one day earlier.
Discouragingly, these types of experiences are not anomalies. Like most mental health advocates, best selling author, Pete Earley, became frustrated by the confusing and oft enervating mental health system when his son became ill. Earley’s very informative book, Crazy: A Father’s Search Through America’s Mental Health Madness, explores the healthcare and criminal justice system for those living with mental illness and for their advocates navigating the health and justice system. In Crazy, Earley tells a story of his frustrating effort to commit his son, Mike, whose mental health was deteriorating:
The doctor said: “Virginia law is very specific. Unless a patient is in imminent danger to himself or others, I cannot treat him unless he voluntarily agrees to be treated.” Before I could reply, he asked Mike: “Will you take medicines if I offer them to you?”
“No, I don’t believe in our poisons,” Mike said. “Can I leave now?”
“Yes,” the doctor answered without consulting me. Mike jumped off the patient’s table and hurried out the door. I started after him, but stopped and decided to try one last time to reason with the doctor.
“My son’s bipolar, he’s off his meds, he has a history of psychotic behavior. You’ve got to do something! He’s sick! Help him, please!”
He said: “Your son is an adult and while he is clearly acting odd, he has a right under the law to refuse treatment.”
“Then you take him home with you tonight!” I exclaimed.
Mental health professionals are required to follow the criteria established for hospital admission. This criteria and HIPAA privacy laws restrict providers, often resulting in sub-par care and tragic consequences for people who live with mental illness. Advocates, mental healthcare providers and patients are frustrated with these laws and protocols that quite simply are more often harmful than helpful.
No good comes from an untreated illness and after leaving the ER, Earley’s son was arrested and incarcerated for trespassing. Fortunately, Mike caused no physical harm to himself or others and the arrest prompted Earley’s investigation of the mental health and criminal justice system.
Virginia State Senator Creigh Deeds and his twenty-four-year-old son were not fortunate. Deeds’ emergency intake experience was similar to Jean’s and Earley’s but with horrifying consequences. His son’s observable symptoms indicated he was becoming gravely ill. Like Jean and Earley, Deeds was unsuccessful getting his son committed. Deeds was told there was no bed available for his son. Later, Deeds’ son stabbed his father, leaving a lasting facial scar, and then he killed himself. Says Deeds about his experience with the medical system,
That makes absolutely no sense…An emergency room cannot turn away a person in cardiac arrest because the ER is full, a police officer does not wait to arrest a murder suspect or a bank robber if no jail space is identified.
Deed’s experience prompted him to initiate changes in the emergency intake laws in his home state of Virginia. The changes include:
- Doubling the maximum duration of emergency custody orders to twelve hours and establish a framework to ensure private or state psychiatric beds are available for individuals who meet criteria for temporary detention.
- Requiring State hospitals to accept individuals under temporary detention orders when private beds cannot be found. The law enforcement agency that executes an emergency custody order will be required to notify the local community services board, which serves as the public intake agency for mental health emergencies.
- Establishing a state registry of acute psychiatric treatment beds available to provide real-time information for mental health workers.
Deeds acknowledges that changes to the intake law are “just the beginning” of the process the state must undergo to modernize and increase the effectiveness of the fragmented mental health system. His detractors believe more changes should have been implemented. But he accomplished what he’d identified while on his back in recovery from the physical injury his son inflicted. And these changes can be a model nationally. Deeds said, “The bill signed by Virginia Governor McAuliffe makes needed improvements to the emergency intake process. But there’s so much more to do.” As a father of a person with serious mental illness, Deeds is keenly aware of holes in the health care system. Says Deeds,
What happens after crisis intervention?…What if a person needs long-term care? What happens after the first 72 hours? Our system was deficient before, but a lot of deficiencies remain.
Many parents interviewed for our Behind the Wall story collection share the experience that there was little information about, and questionable access to, post emergency commitment treatments or alternative resources when a person in crisis is denied hospitalization.
Frustrating experiences like those of Jean, Earley and Deeds are shared by almost all parent/advocates of a loved one living with chronic mental illness. To effect change and remove dangerous roadblocks in the mental health system, Jean could, perhaps, pursue legal retribution against the medical professionals who failed her son despite having been provided Keith’s pertinent health history. But Jean notes that the hospital and mental health professionals followed an established protocol, even though that protocol was clearly flawed. Legally, they did nothing wrong. Instead, she will work for systemic change for Medicaid patients through NAMI (National Alliance on Mental Illness) to shape a more comprehensive diagnostic protocol, one that incorporates a case-by-case basis method of treatment for mental illness symptoms. She expects pushback but she is determined.
Changes that advocates like Jean, Deeds, and Earley are pushing are critical for the reparation of the broken system. It seems overwhelming. But there is hope. In June 2015, Representative Tim Murphy (R-PA) introduced H.R. 2646, the Helping Families in Mental Health Crisis Act of 2016, which was passed in July 2016 in the House. H.R. 2646 will now move to the Senate for approval. The changes proposed are substantive. The link to read the language of this bill and follow it as it moves through the Senate can be found here: https://www.congress.gov/bill/114th-congress/house-bill/2646
There is much work to be done in order to provide the best care for our loved ones who live and struggle with mental illness every day of their lives. If you are a caregiver or a person with mental illness we’d like to know your thoughts.
If you, or someone you know is thinking about suicide, please visit these sites and get help:
 All names have been changed to protect privacy.
 For more information about Pete Earley, his advocacy and to purchase his books, please go to his official website: http://www.peteearley.com/books/crazy/
“Leaning in” to Motherhood. How it is for the rest of us.Posted: May 8, 2016 Filed under: Uncategorized | Tags: addictions, Behind The Wall Parents, bipolar, brain disorder, caregivers, dual diagnoses, family support, Lean in, mental health advocacy, mental illness, mental wellness, mental-health, mom, moms, Motherhood, mothers, Mothers Day, Parenting, psychosis, schizophrenia, schizzoaffective, serious mental illness, Sheryl Sandberg 2 Comments
Motherhood is beautiful. And messy, challenging, sometimes exhausting, and wickedly unpredictable. The moment a child first gazes into his mother’s eyes, or writes her first grade poem about all the reasons she loves her mother, diminishes most of the heartbreaking events—like the first snub a child experiences by a friend, or a child’s serious illness. Motherhood can be a roller coaster of emotions.
Sadly, some mothers don’t get many of the kind of moments that balance heartache.
This is why I take umbrage at the “Lean In” concept perpetuated by Sheryl Sandberg. Designing one’s own life is possible only to a degree; many of us recognize that motherhood and life throws curve balls. The suggestion that women can be mothers and “have it all” is simply preposterous unless we re-frame the definition of “having it all”. Something has to give way to have it all.
The concept of reframing “having it all”, and how to work toward it was introduced to me by some of the most amazing mothers I know—those women we interviewed for our story collection, Behind the Wall: The True Story of Mental Illness as Told by Parents.
This is not a rant against working mothers. We need women in the workforce and leadership positions. Personally, I prefer a female doctor. Ms. Sandberg is remarkable for what she has achieved while also raising a family. She has raised the bar for what women can achieve in the high tech world, one in which women have not felt welcomed. But her “Lean In” movement feels disingenuous.
When we plan to have a family, we envision our little family taking walks in nature (without whining about taking the walk), teaching our child to ride a bike, and celebrating graduations, proms, and weddings. As my sister, Elin, says, “That first time you gaze into your child’s eyes, you don’t think, ‘Someday this child will grow up and develop mental illness or substance use issues.’” But for parents whose children are atypical, these simple dreams aren’t always guaranteed. Parents whose children have special needs or serious mental illness, for example, often must make career and lifestyle choices to meet their child’s needs. Bianca, a mother we interviewed for Behind the Wall, had to choose a nursing position that provided a schedule that allowed her to be available for her son who lives with schizophrenia and sometimes cannot be left alone. Bianca’s other adult son sometimes works from home to be with his brother.
Dan considers himself fortunate to have been able to work at home while his daughter, who lives with schizophrenia, was recovering from a mental health crisis. Tessa, a mental health advocate and mother of an adult son with serious mental illness, is challenged to find a window of time to take a vacation because she never knows when a crisis may erupt. And I’m not even talking about the financial impact on parents of an adult child living with mental illness. Or the stress on a marriage.
But yet, these mothers we interviewed do have it all. All of them talk about gratitude for what they do have, how the experience of raising a child with a chronic illness has made them more empathic and compassionate. They are generous, spreading the message of their experience in an effort to help others. They also understand the concept of letting go of control and accepting what cannot be changed and fighting fiercely for what they can change. These mothers are caregivers and gladiators. They understand more about life than most and can hold a range of emotions with utter grace. Their gratitude is genuine, and deeply felt. And whether the rest of society recognizes it or not, by taking care of their own, they contribute in immeasurable ways to our society.
How about we lean in and embrace the hard work they do every day that often goes unrecognized.
This post is dedicated to those mothers. Happy Mother’s Day.
We always welcome your comments:
Grief: The Path to Hope and RecoveryPosted: August 27, 2015 Filed under: Uncategorized | Tags: addictions, Behind The Wall Parents, bipolar, caregivers, family support, fatherhood, HIPAA, mental health advocacy, mental health treatment, mental illness, mental wellness, mental-health, Motherhood, Parenting, parenting help, psychiatric patients, psychosis, PTSD, schizophrenia, schizzoaffective, serious mental illness, substance abuse 1 Comment
By Elin Widdifield
I’m grieving. I lost my son. Somewhere he’s still there…It’s okay to let yourself grieve. It’s going to be a lifelong process.
– Bianca, the mother of a 25 year-old son who lives with schizophrenia.
Jennifer was self-disciplined and structured. Now we had a child who couldn’t cope in school. That was like having a different child. It was as if one day we opened the door to find someone else had moved in.
— Esme, the mother of a 20-year-old daughter diagnosed with
borderline personality disorder, bipolar disorder, and substance use disorder.
Throughout our interviewing process for Behind the Wall, and as we continue talking with parents we meet as we travel around the country to talk about our story collection, we have found that the same themes continue to bubble up. We expected parents to talk about problems with HIPAA laws, lack of access to evidence-based care, complexities of a dual diagnosis, medications, and the court system…and we were right. But one of the most poignant and recurring themes continues to be the subject of grief.
When a loved one becomes ill, each family member experiences grief, including the person living with a mental illness. For example, parents grieve over the temporary and permanent cognitive and behavioral changes in their child and the requirement that parent and child revise expectations for short and long-term educational, professional, and personal opportunities. Siblings grieve over changes in personality and abilities that alter relationships; family focus often shifts to the needs of the ill child, which can create a sense of loss for other children and alter a family’s dynamic. A person who lives with mental illness grieves the loss of himself and what is lost cognitively, such as the ability to read books or sit through movies.
All family members may experience isolation from their community due to stigma and because outsiders often can’t comprehend, or choose not to learn about the experience of having a loved one living with mental illness. The chaos and confusion that goes on behind the walls in these homes is often undisclosed to friends, neighbors, and even to the mental health care providers, leading to more isolation.
The Merriam-Webster dictionary defines Grief in part as the following:
A: deep and poignant distress caused by or as if by bereavement
B: a cause of such suffering
Parents of adult children living with serious mental illness likely identify with poignant distress and suffering. There is no deeper emotional suffering than that of losing a child—even just parts of that child altered by illness either temporarily or permanently.
When we began interviewing parents for our story collection, the first question we asked parents was to tell us about their child as an infant through adolescence. We wanted to know about their child’s talents, their personality, and later interests and friends. We wanted to see if parents had a library of good memories in the midst of the chaos that defines living with a loved one suffering with a brain disorder. Most all parents brightened while talking about their child’s early years. There were fond memories of family vacations, special talents, and achievements in sports or academics. One parent relayed a story about how charming her son was from an early age— and still can be when he is stable, and compliant with his treatment.
Seeing our newborn’s face, we imagine the possibilities, hopes and dreams. We think, here’s a clean slate! And we plan to do everything right for this pure, beautiful, gift. This little place in our heart grows with these imaginings of who he will become and how will he change our world, and how much love we will always have for him. Gazing into the tiny bit of perfection created by what can only be miracle, we don’t imagine the illness that comes later and we tell ourselves, we will protect. Always. To a new baby, no parent ever says, “I think you’re going to have mental illness and abuse substances.”1
When my son, Joseph, was diagnosed with a mental illness, my love for him never wavered but my inner world, the place that held the idea of who he was as well as all the imaginings and dreams of who he would become, collapsed in despair. I found myself isolating from others, giving up activities I had once enjoyed, and lying on the couch, reading madly to find out what I could do to ‘fix’ things. I became paralyzed with the fear of worst- case scenarios. I overate cookies-and-cream flavored ice cream to the point where I still cannot bear to look at that flavor. My husband, also in deep pain, grieved differently. He tried to soldier on, busied himself with work and suggested ways to ‘Fix It’. Our son who lives with mental illness felt great loss too. One day he asked, “What has happened to me? I’m not the same person anymore.” Meanwhile, our older son began to pull away from the confusion. We were all in a sad funk, each feeling a loss, and each in a world of pain.
Fortunately, an astute therapist pointed out that we were experiencing grief. She explained to us that there was hope, and hope leads to recovery—magic words for a suffering family. But there was work to be done—addressing the grief was the first step.
The journey was jagged.
Everyone’s experience with grief is personal; my husband’s method of coping was to be busy with work, I isolated and become obsessive, and our elder son pulled away. There is no judgment for how one does grieve, but working through it is critical for moving forward, and having hope in one’s life again.
Joseph, diagnosed with mental illness with co-occurring substance use disorder, got help through ACT.2 The Assertive Community Treatment team helped him to address head-on his mental illness, medication, and sobriety head-on; the team counseled on how to reintegrate into the community and learn healthy habits for his physical health. It is a day-to-day struggle for people with mental illness to live a structured, healthy life in order to stay out of the hospital. He needed non-judgmental support from loved ones and we needed to work hard to learn about the illness and how best to support him. As he began to work toward these goals, and his health improved, Joseph’s grief was greatly reduced and hope returned. Our whole family began feeling hope. My older son felt he was getting his brother back and I no longer felt gripped by feelings loss and fear. Most importantly, time with family became enjoyable again, as it was before Joseph’s illness.
I worked through my grief with therapy. I found meditation. I engaged in quiet activities that I enjoy. I spent many hours of walking in the woods, kayaking, and talking with other parents. Through this process, I rebuilt that place in my heart that holds my hopes and imaginings for him—the same place that holds dearly to memories of Joseph as a smart and funny little boy. We have home movies of him playing sports, dancing happily, and saying funny things. I began to feel gratitude.
One would imagine that re-visiting memories would make my loss feel unbearable, and it did for a while. But it began to work for me. My husband was a few steps behind me in his process, but he also re-visited all our wonderful memories of who our son once was while we also both began to get to know this new person who was emerging healthy, talented, and smart—a young man in Recovery!
Recently I spoke to a gracious group of mental health care professionals in Winston-Salem, NC, at Novant Outpatient Behavioral Health Hospital. I was happy to learn that they are addressing grief for each family member. I believe it is the job of mental health care providers to help families through this process. When we are grieving, we cannot make good decisions for ourselves because we are in a cloud of emotions, we are often isolated, and everything feels confusing, and dark.
Telling our stories, and hearing the stories of others, greatly reduces our feelings of isolation, and helps us to heal and move forward. As a co-facilitator of the NAMI (National Alliance on Mental Illness) Family-to-Family class, I know that learning about the latest research for brain disorders, and sitting in a room full of people who are learning to cope with a ‘new normal’ as they navigate this ragged road, is also healing and informative.
If you are a person who has a mental illness, or if you have a loved one who is struggling, find an astute mental health care professional who will help you to address your grief, and loss. It is a painful journey, and for me, not unlike having shards of glass stuck in my gut day after day. But one must walk through Grief to get to Hope, and eventually to Recovery.
1 Up to 60% of people who have a mental illness, also have co-occurring substance use disorder. www.nami.org
2 ACT, Assertive Community Treatment is community -based treatment for people with serious mental illness, and often with co-occurring substance use disorder. ACT is a team of professionals who help people to reintegrate into the community by living semi-independently, engaging in everyday tasks, to gain job skills, or attend school. www.dualdiagnosis.org
Comments always appreciated!
C’mon. Say it: mental illness.Posted: June 19, 2015 Filed under: Uncategorized | Tags: addictions, ask for help, Behind The Wall Parents, bipolar, brain disorder, caregivers, dual diagnoses, family support, fatherhood, help, manic episode, mental health advocacy, mental health treatment, mental illness, mental wellness, mental-health, Motherhood, Parenting, parenting help, psychiatric patients, psychosis, quiet heroes, schizophrenia, schizzoaffective, serious mental illness, substance abuse, support Leave a comment
What do we want to talk about?
This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
Comments are always welcome:
Why we talk about mental illness.Posted: May 12, 2015 Filed under: Uncategorized | Tags: addictions, Behind The Wall Parents, bipolar, brain disorder, caregivers, dual diagnoses, family support, mental health advocacy, Mental Health Awareness Month, Mental Health Parity, mental illness, mental-health, Parenting, Patrick Kennedy, serious mental illness, substance abuse 1 Comment
Sometimes the stories are difficult to hear. Maybe the stories are too close to home; maybe the stories present a reality we’d prefer didn’t exist.
And it’s so unpleasant—talking about chaos in the home and grief parents experience watching their child change as the illness manifests. The ugly scenes! The awkward moments! And worse, some die as a result of behaviors or disordered thinking brought on by the illness.
Maybe if we don’t talk about it, it will go away.
May is Mental Health Awareness Month and those of us who live with a brain disorder, or have a loved one who does, will be talking about it. We make some people uncomfortable. But we need to talk about it to give hope to others. Yes, that’s right, hope.
Since publication of our book Behind the Wall: The True Story of Mental Illness as Told by Parents, a collection of true stories, my co-author sister, Elin Widdifield, has been approached by friends and acquaintances who say, “I had no idea you were going through so much. I’m sorry.” Elin appreciates this concern and knows it comes from a genuine place, but we didn’t interview other parents to garner pity for them. None of the parents, Elin included, want pity.
In the words of Esme, one of our contributors, the reason for telling one’s story is to simply help another parent. “If I can just help one person, it will be worth it.”
Telling one’s story, and listening to others, is wisely encouraged by the National Alliance on Mental Illness (NAMI). The act of telling and listening is informative and healing.
There is chaos, danger, and even death in the stories told by our Behind the Wall Parents who have witnessed their child’s illness unfold. That is reality. Sometimes a loved one doesn’t reach recovery. Sometimes they do. But why does anyone really need to embrace this brutal reality? Why shouldn’t we just go about our merry way, talking about celebrity mishaps and what Emeril is making for dinner?
Because one in four adults have been diagnosed at one time in their lives with a mental illness. One in seventeen lives with serious mental illness such as bipolar disorder, severe depression, severe anxiety, schizoaffective disorder or schizophrenia. And their loved ones are impacted also.
A person living with untreated mental illness creates tremendous chaos in the home and in the lives of his or her loved ones. When a person is out of control—has frequent rages, runs away, uses drugs, or all of these things—it can drive families into isolation. Parents in this situation feel that no one else can possibly understand what they are going through. Adding to feelings of isolation is that parents are often harshly judged for the “bad behavior” of their child. Stories illustrate that a child’s extreme behaviors may possibly be a sign that treatment is needed. Sharing how parents overcame the isolation and chaos helps others to not feel so alone. When a parent has no idea how to help her child and begins to lose hope, stories about celebrities don’t help. Stories about others who share their experience offer hope.
Talking openly and honestly deflates mental illness stigma that is usually the barrier for many who desperately need treatment. Stories show it can get better with evidence based treatment. Describing outcomes without effective treatment (self-inflicted harm or even death) or with effective treatment (a fulfilling life), illustrates that seeking professional help is not a weakness but an act of resolve, strength and requires hard work and a willingness to change.
But there are actions a parent or loved one can take to more successfully cope and to increase chances for recovery for a loved one: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible.
Talking about mental illness informs others that there isn’t really anything specific that causes it. But there are actions a parent can take to more successfully cope and increase chances for recovery for their child: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible. Talking honestly about recovery, a parent/advocate can learn there will be setbacks and it isn’t anyone’s “fault” nor is it the end of a chance for recovery.
But why do others need to know so much about mental illness? Because if it doesn’t run in your family, why should you care?
Brain disorders runs in families but impacts society. Encouraging early intervention, which increases chances for recovery, and community based programs with evidence based treatments, make more economic sense then waiting for a person to endanger themselves or get into a tangle with the law, or worse.
Our communities need to be inclusive and support those working hard to manage serious mental illness. Many of our most successful citizens live with mental illness. They just don’t talk about it.
The question is, why aren’t we making all the months Mental Health Awareness Months? Well. We are.
Thank you for visiting our blog. As always, we welcome your comments.
The Shame of StigmaPosted: April 2, 2015 Filed under: Uncategorized | Tags: Behind The Wall Parents, bipolar, caregivers, family support, gratitude, mental health advocacy, mental-health, Motherhood, Parenting, psychosis, schizophrenia, schizzoaffective, serious mental illness, Shame, stigma, Wally Lamb 2 Comments
by Elin Widdifield
Last week in a book group I facilitated, the topic of “shame” was raised during discussion of author Wally Lamb’s latest novel, We Are Water. One of the main characters, Annie Oh, had been sexually abused as a child. Her shame was wrapped up in guilt and loss, and as a foster child, she received no professional help. She no doubt felt confused, angry, and she lived in a tangled web of shame and secrecy. For years, her anger festered, expressed in her “outsider art” and by abusing her son. Shame, guilt, and secrets caused darkness and deep troubles in Annie Oh’s family.
What is shame? Merriam-Webster defines shame as: A feeling of guilt, regret, or sadness that you have because you know you have done something wrong. Ability to feel guilt, regret, or embarrassment, dishonor or disgrace
From the Oxford Dictionary we can add: A painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior. (Emphasis in bold is mine.)
Shame can be useful for enforcing behaviors that keep individuals and others safe in a society. We want criminals to feel shame for socially unacceptable actions. Unfortunately, many criminals are sociopaths, incapable of feeling empathy, guilt, or shame, which can create frustration for those of us who do experience and respond to these emotions and/or have been a crime victim. Most all of us have felt shame at some point in our lives, perhaps as a child, when learning society’s code of ethics from elders. Sadly, some, like Lamb’s Annie Oh character, carry an undeserved burden of shame throughout life.
The Oxford Dictionary says, shame is a distress caused by the consciousness of wrong or foolish behavior. What is perplexing, and not included in the Oxford or Webster definition, is that too often people feel shame for events out of their control, such as being abused as a child or born with a brain that is wired for a mental illness.
What does shame do? Shame isolates, leads to secrecy and to hiding one’s truth. Shame denies one the ability to make honest appraisal of oneself, one’s life. Shame is the foundation of stigma and most devastatingly results in a reluctance to acknowledge illness and/or seek treatment.
How many times has the media squawked bafflement that an individual who has caused their own death or harm to others had lived with undiagnosed or untreated mental illness? “How could a person or their loved ones ignore obvious symptoms of mental illness,” they ask?
Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar…
For those of us who have a loved one living with a mental illness (most of whom are NOT a danger to others), it is not surprising a person fails to seek treatment, or that loved ones weren’t successful in enforcing treatment. Our society feeds the stigma of mental illness with its solid diet of… yes, shame. Rarely is a person praised for their hard work of addressing their mental illness and undergoing treatment. It’s usually discussed in hushed tones. Rarely is a person promoted in their job after they’ve revealed their history with mental illness, even if their work had been stellar, and this despite the long list of highly successful individuals living with brain disorders.
How can we help to detangle this mess of shame, guilt, and secrecy, and diminish stigma?
We can speak about brain disorders openly in the same way we speak about physical disorders. Caregivers, family members, and loved ones must speak up about needing support. Those looking from the outside see no crutches, casts, or blood. Yet, in the home, loved ones are subject to the ill person’s extreme behavioral changes that cause chaos in all the lives around him. Loved ones must change plans as quickly as they are made; they often seem distracted and are overwhelmed. But those looking in from the outside don’t know the truth unless it is spoken about.
Starting a conversation about the impact of a loved one’s brain disorder on our family, and more broadly, our society, is not always comfortable. We still encounter a tone-deafness about mental illness. Recently, when talking about interviewing people all over the country for Behind the wall, a man interjected, “You mean you found crazies all over the country?” I bit my tongue and, after a beat and a breath, I continued my effort to share information about mental illness. Some will back away, because this illness has nothing to do with them or their family. And that’s okay. Fortunately, in our experience, most people to whom we speak about Behind the Wall do understand or want to learn about brain disorders.
For the sake of our neighbors, friends, and because of the prevalence of mental illness across the globe, we continue to share what we know about brain disorders in an effort to reduce stigma and encourage individuals to seek treatment. Speaking openly, without shame, is beneficial for a whole society. We can have stronger and safer communities when our citizens who live with mental illness are not afraid to be diagnosed and treated. National Alliance on Mental Illness (NAMI) states the importance of encouraging quality (evidence based) treatment in terms anyone can relate to:
The human and economic toll is enormous yet often hidden. Untreated mental illnesses in the U.S. cost more than $100 billion a year in lost productivity… Local hospitals and clinics must cope with associated chronic physical diseases. Schools have to open more special education classes. Courts and jails handle a large number of individuals who suffer from untreated mental illnesses. Suicide ranks among the top fifteen most common killers in the U.S. (in the top three among young people), and 90 percent of cases can be attributed to mental illness.
Our society must take responsibility to learn symptoms of an active mental illness. Those of us with experience, and who understand the illness, can lead this effort. An effective step in this endeavor is to demand in our communities that law enforcement, first responders, educators, and anyone else interfacing with the public are properly trained to recognize symptoms of brain disorders and learn how to interact with a person in mental health crisis. Brain disorders cause people to behave in odd ways. No doubt. A person with a mental illness may respond to his own inner processes, which may include frightening voices or paranoid beliefs. Atypical brain activity caused by the illness may be reflected an appearance of “not being all there,” and his responses are unpredictable to outsiders. Understanding brain disorders requires respecting that the input affecting his brain processes is unknowable and that his responses to these inputs influence behaviors that are odd and possibly frightening to an outside observer, or family member. These are behaviors of untreated mental illness, or of a person who has experienced a relapse.
We can all play a part in identifying misplaced shame for an illness that wasn’t chosen by the ill person and the foolish behavior symptomatic of the illness is out of one’s control. We can all do our part to reduce stigma so that people will seek and receive treatment.
We can stop assuming that living with mental illness equates to an inability to hold down a job and living a fulfilling life. Most people who are treated for serious mental illness live full and meaningful lives.
Our faith communities and workplace can be inclusive by understanding that the illness has symptoms that should not be conflated with a person’s character, or behaviors when they are well. We can support a person who lives with mental illness by providing a route for skill-building and work experience.
We can support caregivers of people living with mental illness by simply listening, taking a walk, or having coffee together.
There are many organizations whose mission it is to support individuals and families of those living with mental illness and to address stigma. Among the many, check out:
As always, your comments are most welcome: