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:
My sister, Elin, and I bid farewell to our dogs within four months of each other. Interestingly, they were both German shepherd mixes, who shared similar black and caramel coloring and reliable, painfully loyal temperaments.
In peripheral vision, one could be mistaken for the other, though my Sweetie’s build was slight and less muscled, with a soft belly that comes from motherhood.
Sweetie, the (dog) love of my adult life, my loyal and constant companion, experienced a tragic, unexpected death. One moment she was in my life; suddenly she was not. Maggie Leigh’s illness progressed slowly. Elin watched as her once athletic companion began to move deliberately, then became increasingly wobbly until she suffered a stroke. But she remained mostly mentally capable until the end, always tracking Elin. Maggie Leigh left this world gracefully.
No one will ever convince me that grieving a dog’s passing isn’t profound, no matter how the end comes. While sometimes we can sort of prepare, that first morning without the familiar greeting of unconditional love from the bond born the moment eyes connected through metal bars at the pound, delivers a gut punch. I’ve heard it said that dogs teach us lessons we need at the precise life phase we need it. Dogs make us better humans if we allow for it. That is, if we are willing to open ourselves to that same connection that inflicts the excruciating pain in their passing.
When Elin met Maggie, she was sick with pneumonia, barely able to lift her head off the cold concrete, and according to Elin, was not nearly as beautiful as her sibling. Elin’s husband couldn’t understand why she wanted that puppy when there were so many quintessentially adorable ones putting on a show in their kennels. But Elin knew. In their last moments together, Elin thanked Maggie for being exceptional, a dutiful champion of Elin as she trained for her first, then second-degree black belt—running at her side, always eager for walks, reassurance, and affection. They canoed and kayaked together. In Maggie’s early years, she swam alongside the kayak, driven by the desire to be near Elin. Later, during challenging years of my sister’s life during which she grieved deep losses, Maggie was there, watchful, forcing Elin out of the house to do the activities they both enjoyed and nosing Elin forward to engage in life. Maggie and Sweetie had a way of resting their head on paws while their pecan-colored eyes followed us around the room, waiting for acknowledgment and eager and patient for the next outing and task. One thing to love about dogs is that no matter what kind of bizarre experience one has at work or with another loved one, the dog will always be thrilled to see you and agree with you. They never talk back. They remind us, “Everything will be alright.”
I didn’t want a dog when Sweetie came into our life. I said I’d only take a dog who didn’t bark and was easy going, and I listed other criteria too unrealistic to fulfill. But then I got the call from my dear friend, a “dog-whisperer” type who said, “I got the one for you.” She was right. I fell in love. She wasn’t a beauty though, at least not objectively. When my husband and I met Sweetie, she stood and leaned over the edge of the low wall of her pen to greet us while four of her seven puppies hung from her teats, desperately sucking. Her ribs protruded and her stomach swung as she walked. Having just transcended that phase of motherhood myself, with toddlers hanging off me, I understood completely her joy and relief to take a walk with us down the country road without the babies. And I also identified with the way she checked on each one upon her return. Her first night home with us, alone, she slept through the night, gloriously sprawled on her back, in her own bed. We understood each other.
For the rest of her life, it was her preference to sleep alone in her bed, only retiring after she’d checked on each family member. Sometimes she’d nudge us to come up to bed because it was getting late.
Family life is not easy. Adding children to the mix can bring much joy, but it’s also like filling a giant, old urn with water. The cracks of the parental relationship are exposed by the leaking water; if the thing is fundamentally unstable it all comes apart. For us, children certainly added new dimensions of stress, logistical challenges, and forced closer inspection of our marriage and ourselves. Fortunately, we have been moving through it, but the process has been fraught with chaos as well as grief, frustration, sometimes pettiness and anger. But throughout these transitions, we had good intentions. And we had Sweetie, who reminded us to get out in nature and offered unwavering loyalty and affection.
Sweetie connected us to outsiders too, which is notable considering my penchant for a hermetic life. She was a perfect citizen. She was also co-parented by our next door neighbors Patricia and Richard, whose dog, Molly, trained Sweetie on the ways of the neighborhood, barking furiously when Sweetie strolled too far down the street towards a dodgy intersection. Patricia and Richard also generously hiked with Sweetie, even after Molly’s passing, and kept her when we traveled; we never had to experience the guilt of leaving her in a kennel. When Sweetie was left alone, she was devastated, but since she loved these neighbors, known for feeding her steak when she’d stroll over for a visit, she seemed to see it as a spa vacation.
We’d had Sweetie only a few weeks when we were walking downtown and I reminded her at the curb, in a soft voice, “Wait.” She stopped dutifully as if we’d always done it that way. The first time I took her leash off, she looked at me, as if to say, “Thanks for trusting me,” and never really needed one again. She’d hear my commands in my normal speaking tone of voice, and in fact, we never raised our voice to her. There was no concern for her getting into an altercation with another dog either. When she sensed trouble, she’d simply walk a wide arc around the problem and never look back. She was a good role model for me.
I took Sweetie everywhere. Though dogs are not permitted at the elementary school, I often brought her to the campus when collecting my children. Many of the kids knew her by name and she loved the attention as if she knew it was her role on earth to be kind and represent her species well, especially for those kids without dogs at home. We’d often be approached by kids on the street who knew Sweetie and would greet her affectionately.
My identity became linked to the sense of her being constantly at my side. Like a true therapy dog, which she essentially became, she kept me calm and grounded. Sweetie was also a delightful companion. I talked to her constantly. We loved going to the beach and even enjoyed the cold Pacific water. She loved creeks too. And simply being with her pack. Dog love feels pure to me. Sweetie brought so much unconditional love and joy into my life.
So, as the years passed, and I noticed the white whiskers around her face, I promised I would be with her to the end of our natural time together. I promised her I wouldn’t allow her to feel pain. It’s the least one can do for an animal so devoted and special. Yes, I would be with her until the end. I earnestly whispered this, pressing my lips into the soft fur of her upright shepherd ears. I also swore I would never get another dog because I knew I could never do better than her.
I broke these promises I made to Sweetie. I failed the one who held unconditional love and devotion for me. It’s sickening.
It’s hard to accept that you cannot go back in time to change events. As much as I know it’s fruitless and an act of self-flagellation, I continually run the tape loop of how I could have prevented the accident that killed her. I could have found her sooner, before the accident. I know I could have saved her. All this excruciating pain could have been avoided.
When my dog-whispering friend, Cate, learned of Sweetie’s passing, she reminded me of the lessons Sweetie taught me. This did not immediately assuage my grief. Instead, I grieved more deeply because she had given so much and I failed her miserably. I betrayed her. Not a day goes by I don’t think of her.
My husband and I get a lot of compliments on our new dog, Pepper, a year-old Dutch shepherd (yeah, it’s a thing) puppy we adopted from a dog rescue to fill the giant chasm Sweetie left. Her glossy brindle coat and athleticism belies the digestive problems she had for the first four months we’ve had her. She wasn’t fully house trained during some of that time either. Last week she ate my son’s candy and threw it all up at three am, wrappers and all, on one of our good rugs. She’s still shitting wrappers. She requires a minimum of two hard workouts a day. Along with plush toys and tennis balls, there are random shoes, socks, baseball caps, TV remotes, and whatever else is within her reach strewn throughout the house, as it is her habit to carry something around to get attention. Luckily and surprisingly, she chews only her toys and bones we give her. She exhausts my husband and me. And of course, all four of us have fallen in love with her. Hard.
Which may be why this dog came to us. She has forced all of us to actively engage with her. All. The. Time. And while Sweetie was in fact, the most perfect and loving dog, she was not one to cuddle, which is arguably the most critical requirements for the well-being of adolescents and teens; nothing soothes better than a pet snuggling with you in bed on those dark, cold nights after a day when your friend(s) never returned your text or ignored you at lunch. Our house is one in which we’re all struggling to grow into something better—whether it’s into a new or changing career, getting through high school or getting the hell out of middle school in one piece. Pepper is distracting us all from the banal by needing us to play, and care, and cuddle.
It’s not always possible to make sense of why things happen the way they do. Even if we could know, I’m not sure it’s useful to know why we suffer a loss, heartbreak, or a joyful moment. I know for sure that we cannot control most of the heartbreaks we experience. I also know Sweetie pulled me into my community by being perfect; loved me unconditionally during a particularly turbulent family phase. Maggie served as a steadfast companion to Elin when she most needed it too. And now, Pepper seems to be shaking up the household in a whole different way. And to think, we almost re-homed her only two weeks after we’d brought her home.
We always appreciate your feedback:
When our extended family was seated around my grandparent’s thick, oak dining table—one given to our great-grand-father as debt payment during the Depression and that had been elongated by inserted leaves for the gathering— the discussion would inevitably escalate until one of the men slammed a fist on that table and stomped out of the room. Usually this was Pop, my mother’s father, disgusted over where the political discourse had gone. Incredulous that these people in his house were so damn backward thinking. Not infrequently, it was my own father who’d set him off. My father had a prickly relationship with Pop. On the other hand, Mama, my grandmother, loved everyone, brought out the best in all, including my father (plus he was Catholic!) and that was reciprocated. But she’d get pissed at theatrics. “Oh N.S.!” She’d hiss, always calling my grandfather by his initials. “For god’s sake!” She’d toss her napkin down and go through the swinging kitchen door to retrieve the desserts for the rest of us.
My father got into it with my uncles too. Later, my sisters, who are a decade older than me, battled it out with Pop, a white, upper class, college-educated man who’d lost his fortune in the second big market drop of the Depression in ‘34. Throughout adulthood, he’d had a rough ride with substances but finally committed to sobriety on the day his first grandchild, my sister, was born. Those drunken years deeply affected his family and were especially ugly for Mama, whose wifely duties were primarily to cover for him. My sisters, however, brazenly challenged Pop’s views on charged topics like civil rights and Middle East politics. They were living and attending nearby colleges and had fresh, compassionate, vibrant minds with perspectives my grandfather couldn’t possibly fathom. But despite fundamental differences in their belief systems, he relished their verbal sparring and witnessing his granddaughters passionately debate. He always believed that as they matured, they’d come around to see the world as he did. On that point, he was wrong about my sisters.
I was too young to get in the fray and, frankly, too interested in getting to the dessert course. Mama had a special technique for swirling cinnamon into her pumpkin pie. But the gentle, old-married- couple bickering, sometimes all-out barking, between my grandparents remains in my memory, as does the way Mama plied my father, her son-in-law, with the fig preserves he loved to eat for breakfast while patting his shoulder lovingly, even on those mornings after a blow-up with Pop. Food has always been currency in our family culture.
I’ve been thinking a lot about sitting around that big table with my uncle who knew it irked my disciplined, raised-on-nothing father when he ate an entire roast beef in one sitting, or made us hysterical with the jokes thirteen-year-olds tell that no polite person would repeat. Especially at the dinner table. Mama’s children, my mother and two uncles, often joked about the horrific events that had happened in that house with a raging alcoholic. Or when there was no money. And it was hilarious. These were flawed and scarred adults who, along with the kids, shared a love for one another despite the chaos and ancient familial grievances; we also shared in our love for Mama and her pound cake, apple pie and the chocolate sauce she taught all her granddaughters how to make (for the record, and contrary to my cousin Janet’s assertion, mine’s the best rendition). I can still hear the din from the television console and smell the sweet pipe smoke wafting from that tiny den, where my grandfather would plant himself in that squeaky leather recliner whether after storming out of a room or just because it was that time of the day. Or because Jeopardy! was on and we’d all compete to show him who was the most clever.
Of course, Mama and Pop are now gone. Many heated discussions amongst family members outlived them. Raised voices. Storming out of rooms. And likely there are more to come. At more recent family gatherings, cousins laugh about the differences; we roll our eyes, grateful we’ve even stayed connected (thank you Facebook). It goes unsaid that we share a deep love for our flawed grandparents who we are sure would love us as much today as ever, even though we casted votes for candidates they would certainly consider ghastly.
Mama had a way of cutting through it all with a sense of humor. I wish I had her talent. On this Thanksgiving, I am grateful my grandfather lived his later years sober, and that I now understand how difficult this was for him. I am grateful we have recipes. And most of all, loved ones to feed.
Here’s wishing that you too find that which surpasses the ugly discussions in life on this day of gratitude.
As always, we welcome your comments:
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:
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.
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:
Our Behind the Wall blog and book explores the emotional journey of parents who advocate for their now adult children diagnosed with serious mental illness. The primary criteria we set for this project from the beginning was that the finished work remains worthy of the parents who contributed, contain useful information, effectively convey that parents are not alone in their journey and offer hope that recovery is achievable. Our intent is to provide truth and solace.
Our interviews with parents yielded valuable information and hope. Parents needed to tell stories and we were grateful and honored to be there to listen. Throughout the interviews, consistent themes bubbled up in the stories including chaos, feelings of isolation and grief, coping, hope and recovery.
As we travel around the country for book signings and other speaking engagements, we continue to meet inspiring parents and hear stories. We consistently hear that we are not alone. There are many who live in recovery or have a loved one who does.
Because we feel a responsibility to speak on behalf of parents who share stories with us, below are a few things we’ve learned on the road we’d like to share.
What we learned on the road by talking about mental illness:
We are not alone. We cannot say this enough.
Families are yearning for a voice that recognizes and understands the grief, chaos, confusion and frustration associated with living with a person who has untreated mental illness and is trying to navigate the mental healthcare system.
Hearing stories from others and telling one’s own story has shown to be informative and healing. We all need to be heard. We all need to know there is hope for the difficulties we are experiencing. Knowing what has helped others shines light into the darkness and unknowing of a mental illness diagnosis.
It often seems as if there is constant talk about mental illness in the media and the assumption is that there are resources. Yet at speaking engagements, we are reminded that when a parent or loved one begins the journey of advocating for another, feelings of isolation and grief are new, raw and overwhelming; it’s difficult to see past the roiling emotions to find resources and most importantly, hope. And that’s why we tackled this project in the first place—to address the emotional journey of parents. To help others see the long view.
In order to make a difference for families, we continue to talk about mental illness using factual, clear, non-judgmental language.
After a hospital stay, mental health professionals don’t always provide critical follow-up protocols or advice.
Recently, a parent told us that upon her son’s release from a two-week hospital stay following a mental health crisis, there was no discussion from the mental health professionals (doctors, nurses, hospital administrators) about support or follow-up. “Not one social worker or nurse recommended NAMI (National Alliance on Mental Illness) as a resource or outpatient treatment, nor referred us to a doctor to renew my son’s prescription,” she said. “We had no idea what to do. There was especially no discussion on what we, as parents, should do or even what we could read to learn more…We had no idea how to help him reintegrate into the community and go back to school.”
This may not be the case in every hospital but it certainly was the case for this family and many others. We were disappointed to learn this but were not surprised. We are aware of countless stories (some our own) in which a healthcare provider did not fully understand the larger picture of managing mental illness, nor was the important historical perspective of the parent respected or considered in the treatment, which usually resulted in problematic or even tragic outcomes. Further, after a patient’s first mental health crisis, medical professionals often fail to convey that mental illness requires long-term management.
As family members and healthcare advocates, we can continue to talk about the reality of serious mental illness and that there is support. We can also work with—and on the behalf of—our own NAMI chapters to get information about resources into the hands of mental healthcare providers, especially after a psychiatric hospitalization.
Families and those diagnosed need to hear from health care providers that there is HOPE and RECOVERY.
We have learned that mental healthcare providers don’t always understand that the parent or the loved one who serves as advocate is crucial to one’s recovery. The parent or person serving as advocate needs to be included in treatment. Period.
Studies show that a person recovering from any health trauma has a much better rate of recovery when well supported by loved ones and community. Who knows a person’s health history better than a parent who watched the illness unfold?
While Elin was speaking at a university hospital to mental healthcare providers in October, a young man who lives with schizophrenia told the group that one psychiatrist told him he would find recovery and that there is hope. The young man said, “That is what gave me hope and today I am in recovery.”
Early diagnosis is beneficial… if it’s possible.
Research shows that early intervention makes a significant difference in treating mental health issues, yet finding treatment for a person under eighteen is thwarted by a lack of available pediatric psychiatrists, a pervasive myth that individuals under eighteen cannot be diagnosed and by HIPAA laws that restrict the communication flow between parent (advocate) and medical professional. Almost every parent laments, “If only my adolescent had been diagnosed earlier…” And, “I knew my son/daughter’s behaviors were more than ‘adolescent angst but no one listened.’”
As John G. Looney, MD, MBA, Professor Emeritus of Psychiatry and Behavioral Sciences and Professor of Pediatrics at Duke University advises, therapists can treat the symptoms that are seen. There is no need for a label as long as the symptoms are being addressed. It is critical for parents, healthcare providers, and the adolescent to work as a team to address presenting symptoms.
Parents and loved ones are hurting.
Unless one has lived a similar experience, the chaos and grief are unimaginable. At book signings, we often meet parents who are deeply emotional, feeling raw from the experience. Fortunately, everyone in the room understands. And that’s what we learned: there are deeply compassionate people in the world ready to hold others upright and walk with them through difficult times. Which leads to…
We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.
The best way for parents to get support is to reach out, ask for help.
It’s hard to ask for help, but when dealing with a family member’s health crisis—let’s say it’s cancer— it’s perfectly acceptable to request help. Even commonplace to create a whole website about a person’s struggle.
Recently, my friend’s child was hospitalized for a series of procedures and surgery. They set up a CaringBridge.org web page so that friends and family could provide support—meals, errands, caring for the sibling— and could follow medical progress through the daily blog written by the child’s mother. Friends and family were thus able to provide support without feeling we were being intrusive.
Why wouldn’t we do this for a family supporting a person in a mental health crisis? Families whose loved one is hospitalized for a mental health crisis need support too. Most friends want to help but may not know how. Maybe they don’t understand mental illness. Chalk it up to stigma.
Because of stigma, mental illness is awkward. We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.
Resources are available in most communities; accessing resources can seem elusive.
Families need to learn about evidence-based treatments and where to find them in their community. We are always surprised to learn how challenging it can be to obtain services for the ill person and support for the caregiver. NAMI is a great place to start in most communities, though there are many others.
Anosognosia, or the inability to recognize one’s own mental illness, is the most vexing challenge.
Anosognosia affects about 40 percent of people who live with serious mental illness. At almost every event, we get a question about how to encourage a loved one experiencing anosognosia into treatment. Anosognosia is the root of many challenges in advocating and treating a person with serious mental illness, especially those who are over eighteen. A person cannot move forward in his treatment without acknowledging the diagnosis. We always recommend Xavier Amador’s book, I AM NOT SICK! I Do Not Need Help!* Amador developed the LEAP system of dialogue to gently guide an ill person toward insight and ultimately toward recovery on his own volition.
An important note: a person is more likely to address his illness when his loved ones and others close to him are in agreement about the illness, diagnosis and treatment.
“Letting go” and self-care are difficult concepts for parents.
It goes against a parent’s instincts to think of oneself But taking care of oneself provides the sustenance to care for others. All the parents we interviewed and we meet stress the importance of taking care of oneself.
Let’s keep getting the word out about coping strategies, hope and recovery. Please introduce yourself if you attend one of our events. To find out where we will be speaking next, keep checking our event schedule at: www.behindthewallstories.com/home/gallery/
As always, we welcome your comments: