Most of us remember our first bike—mine was red— and the feeling of cruising the neighborhood with a pack of kids, jumping curbs, racing and bombing hills. I also have fond memories of running through the neighbors’ yards, playing kick-the-can at dusk on hot summer evenings. A little bit sweaty and my skin splotched with the sticky remains of an ice cream cone and bug bites, heart racing with the thrill of the chase. I was one of the youngest and always got caught. But still, the thrill of playing pushed away any thoughts that could trouble a child-brain.
A few years ago, my husband and I were asked to join a softball team. I was not asked because I am good at softball. Truthfully, my eye-hand coordination is frequently the source of comic relief and that’s fine by me. But amongst our friends, there was a shortage of female players and the coed league has quotas. Lucky me. As it was throughout my whole athletic career, I wasn’t great, but I had a blast. We all had a blast despite losing every game. Well, maybe the more competitive and skilled players got less enjoyment than had we been a winning team, but no one will deny that the thrill of anticipation when the ball sails into the outfield (where of course I would be installed) or hurtling toward home plate is a magical, adrenaline pumping moment. I may not have been able to make a beautiful play, but the idea of it, maybe more like a fantasy, offered the rush I remembered from playing childhood games and school team sports. Heart pounding. Forgetting about all the other stuff.
And that’s just it: forgetting all the other stuff.
Elin and I talk a lot about the importance of “self-care” for parents who advocate for a child who has a serious brain disorder. Finding activities that bring joy and peace are an important piece of self-care. Finding an escape from day to day discussions of “the illness” benefits a person’s well being. These activities can be things that a parent likes to do alone or with the other parent or a friend. Or on a team. Ideally, a family can participate together in an activity like hiking, swimming, skiing, or cooking together. A father we interviewed for our Behind the Wall story collection, who has a daughter living with serious mental illness, advises doing whatever activity your child (or children) enjoy(s), whether that’s snowboarding or crocheting, but something that gets away from thinking and discussing the illness.
Basically, have some fun. Feel joy. Feel like a kid.
Recently, I rediscovered cycling. One day I took my mountain bike out of its long hibernation in our garage and started riding. I get nervous on tight, gravelly curves and steep, rocky descents. But the process of working on my fears in the physical world takes my mind temporarily away from real life issues I’m juggling. Riding on the trails offers that same thrill of freedom I felt as a kid in our neighborhood. A few weeks ago, my son joined me on a ride and showed me how to conquer the steep descents, specifically, a short set of concrete stairs. He made it look fun and compared doing the jump on our bikes to the thrill he gets skateboarding. He made it look easy too. Truthfully, with good body positioning, it is easy on a mountain bike. So, there I sat, poised at the top of the stairs while my heart knocked around my chest and he calmly talked me through each move through the descent. “You can do this Mom. We are not leaving until you do it smoothly. Without freaking out.” Roles were reversed; he was showing me how to play like a kid. No one talked about homework, financial issues, health issues, or future plans except what was right there before us. Those stairs, and the next ramp we’d tackle. One of the best afternoons of my life.
There really is nothing like the rush of adrenaline and being out in nature to cure (even if temporarily) whatever is nagging at you. It’s certainly working for me. I’ve also started riding a road bike too. I go with friends, or alone, with a loved one, and feel the positive effects for days after. It’s my thing.
For Elin, it’s riding her cruiser at the beach, swimming in the ocean, rowing on her kayak and walking her sweet dogs in the woods. Find your thing. Do your thing.
It’s what your loved ones need you to do.
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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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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.
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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.
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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.
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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.
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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.
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Within a few weeks of starting middle school, a sixth-grader in my son’s class died by suicide. The principal, who was also new to that middle school, acted swiftly and appropriately to the crisis. His communications to the school community contained information about how to talk to one’s child about the event and how grief can manifest. His message was clear: It’s confusing to process this tragic event and important to allow time to talk it through. In addition, resources were provided to students who needed them while at school, and to parents during an evening information session. Thankfully, ours is a supportive community.
Naturally, the school community was shocked. Death by suicide in the US is statistically more common in teens (ages 15-24), ranking as the second most common cause of death. The perception seems to be that suicide is low for adolescents (ages 10-14), but sadly, according to the CDC, it ranks as the third most common cause of death. These statistics are horrific.
The student from our community was also so young; begging the question, “How could a person who has lived barely twelve years have already given up?” Parents wanted to know more about the circumstances of this student’s life and mental health history, though this was thankfully kept mostly private. Maybe knowing some specifics could explain something we all had difficulty understanding and could prevent it from happening again. Secretly, we searched for a factor leading up to this tragedy that is not shared by our child or existing in our family life to assure us this tragic event was an anomaly. One can become selfish when it comes to our own. We look for the “Oh, I get it” moment that allows us to say, “See? There’s the reason.” But there really is no acceptable explanation. It’s simply heartbreaking.
What may cause a person to attempt suicide, particularly those within the 10 – 14 age group, is the impulsiveness that comes with an emerging or untreated brain disorder. Stress is a significant factor in triggering brain disorders that disrupt brain connectivity. Those living with brain disorders often have a lower stress threshold. But of course, we will never know the specifics of this student, nor should we unless the family wanted it so. I’m grateful that (from what I could tell) the family’s privacy was respected, without stifling important discussion.
Because of this event’s emotional repercussions and the concern over the copycat phenomenon common with teen suicide, education about depression and suicidal ideation that is commonly woven into high school curriculum was made age-appropriate and brought into this middle school. Students were taught how to recognize when a friend may need support or intervention and where to get it. Students were taught that if someone expresses he wants to “give up” or says something like, “what’s the point,” a responsible friend should seek advice from a trusting adult. Getting support for your friend, students were told, is not betrayal. These are important messages.
My son shared a class with the student who died, though they were not friends. Still, my son was affected by the event. In the days and weeks that followed, I remained open to difficult discussions about death and suicide and repeated the message to my children about the importance of identifying when a friend may require intervention and how to convey to a person who seems to be in distress that they matter and that resources exist.
But at some point, my son had heard about copycat suicides and worried that one of his friends might attempt suicide. He asked, “What if I cannot stop my friend from doing the same thing? What if he doesn’t listen to me?”
Oh my. In the interest of creating a safe and supportive community, had we burdened these young kids – barely out of elementary school – into thinking it was their responsibility to protect others? Were we setting ourselves and our children up to feel responsible for a person’s death by suicide?
The anguish in my son’s voice over feelings of helplessness and the recognition of his ultimate inability to protect his friends suggested I had placed undue burden. His sorrow was crushing. And familiar. All parents know this wrenching feeling of not being able to control all the levers and conditions of our child’s life. He was feeling that, though for his friends and loved ones.
It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.
There is no question in my mind that thoughtfully engaging with a person who seems to be in emotional distress and encouraging him to seek help is more beneficial than ignoring odd behaviors and hoping for the best. Acknowledging a person who may be slipping into darkness can make all the difference for them in getting help or not; a person may not even know how unwell he has become or that there are resources to help him. It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.
But when a person seems unable to get well, or more tragically, dies by suicide, it doesn’t mean that someone is to blame. This seems obvious, but the parent, loved one or friend of a person who dies by suicide always wonders if they could have done something differently. It’s even a fleeting thought for parents or loved ones who know on a rational level that they have provided all the support and resources within their grasp. It’s always there; the thought, I could have saved him.
There were many gems of advice provided by the parents my sister, Elin Widdifield, and I interviewed for our Behind the Wall project. These parents have adult children who live with serious mental illness and all of them have genuine fears about their child being at risk for self-harm or behaviors that make them vulnerable. Because death by suicide is common for those who live with serious mental illness, these parents are confronted by its reality. A parent once told us, that if you’ve done the best you can for your child, “You can’t blame yourself for their death or their success. There is only so much control you have.”
In fact, that was one of the most common and best bits of advice. There is only so much control you have. Accepting this fact is healing. A loved one can provide ample support and resources but a person must take the mantle to get better. Or not.
Still, witnessing risky behaviors of a child who has an untreated mental illness is worse than having your heart ripped out through your throat. Many parents share the sentiment that they’d rather feel the pain themselves than watch their child suffer. I can tell my child how to ask for help, and-remember-I-told-you-don’t-do-drugs, but out of my sight, I have no control. A person who has delusional thinking isn’t going to make good choices no matter how much he promised when mentally well, or sober or both. It doesn’t mean we are bad parents, loved ones, or friends.
I told my son that being a good friend or loved one means never giving up. But this does not mean a person has to endure abuse from others (another topic) or take responsibility for another’s actions. I will never give up on the people I love. I learned from my sisters and mentors, there is a solution to every problem and that’s what I tell my own children. And when he encounters the sadness that life brings, he will carry it, and his parents will stand beside him every step of the way.
But what I cannot do is solve his problems. I cannot make bad things go away. It’s simply not possible. Not realistic.
There but for the grace of god go I.
Suicide deaths ARE preventable. Here are online resources for suicide prevention:
 For more information about statistics regarding death by violence and death by suicide, please refer to the website for the Centers for Disease Control (CDC): http://www.cdc.gov/violenceprevention/suicide/statistics
 According to United States Department of Health and Human Services, “… people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.” For important information about Mental Health Myths and Facts, see http://www.mentalhealth.gov/basics/myths-facts.
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.
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
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