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.
This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
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Sometimes the stories are difficult to hear. Maybe the stories are too close to home; maybe the stories present a reality we’d prefer didn’t exist.
And it’s so unpleasant—talking about chaos in the home and grief parents experience watching their child change as the illness manifests. The ugly scenes! The awkward moments! And worse, some die as a result of behaviors or disordered thinking brought on by the illness.
Maybe if we don’t talk about it, it will go away.
May is Mental Health Awareness Month and those of us who live with a brain disorder, or have a loved one who does, will be talking about it. We make some people uncomfortable. But we need to talk about it to give hope to others. Yes, that’s right, hope.
Since publication of our book Behind the Wall: The True Story of Mental Illness as Told by Parents, a collection of true stories, my co-author sister, Elin Widdifield, has been approached by friends and acquaintances who say, “I had no idea you were going through so much. I’m sorry.” Elin appreciates this concern and knows it comes from a genuine place, but we didn’t interview other parents to garner pity for them. None of the parents, Elin included, want pity.
In the words of Esme, one of our contributors, the reason for telling one’s story is to simply help another parent. “If I can just help one person, it will be worth it.”
Telling one’s story, and listening to others, is wisely encouraged by the National Alliance on Mental Illness (NAMI). The act of telling and listening is informative and healing.
There is chaos, danger, and even death in the stories told by our Behind the Wall Parents who have witnessed their child’s illness unfold. That is reality. Sometimes a loved one doesn’t reach recovery. Sometimes they do. But why does anyone really need to embrace this brutal reality? Why shouldn’t we just go about our merry way, talking about celebrity mishaps and what Emeril is making for dinner?
Because one in four adults have been diagnosed at one time in their lives with a mental illness. One in seventeen lives with serious mental illness such as bipolar disorder, severe depression, severe anxiety, schizoaffective disorder or schizophrenia. And their loved ones are impacted also.
A person living with untreated mental illness creates tremendous chaos in the home and in the lives of his or her loved ones. When a person is out of control—has frequent rages, runs away, uses drugs, or all of these things—it can drive families into isolation. Parents in this situation feel that no one else can possibly understand what they are going through. Adding to feelings of isolation is that parents are often harshly judged for the “bad behavior” of their child. Stories illustrate that a child’s extreme behaviors may possibly be a sign that treatment is needed. Sharing how parents overcame the isolation and chaos helps others to not feel so alone. When a parent has no idea how to help her child and begins to lose hope, stories about celebrities don’t help. Stories about others who share their experience offer hope.
Talking openly and honestly deflates mental illness stigma that is usually the barrier for many who desperately need treatment. Stories show it can get better with evidence based treatment. Describing outcomes without effective treatment (self-inflicted harm or even death) or with effective treatment (a fulfilling life), illustrates that seeking professional help is not a weakness but an act of resolve, strength and requires hard work and a willingness to change.
But there are actions a parent or loved one can take to more successfully cope and to increase chances for recovery for a loved one: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible.
Talking about mental illness informs others that there isn’t really anything specific that causes it. But there are actions a parent can take to more successfully cope and increase chances for recovery for their child: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible. Talking honestly about recovery, a parent/advocate can learn there will be setbacks and it isn’t anyone’s “fault” nor is it the end of a chance for recovery.
But why do others need to know so much about mental illness? Because if it doesn’t run in your family, why should you care?
Brain disorders runs in families but impacts society. Encouraging early intervention, which increases chances for recovery, and community based programs with evidence based treatments, make more economic sense then waiting for a person to endanger themselves or get into a tangle with the law, or worse.
Our communities need to be inclusive and support those working hard to manage serious mental illness. Many of our most successful citizens live with mental illness. They just don’t talk about it.
The question is, why aren’t we making all the months Mental Health Awareness Months? Well. We are.
Thank you for visiting our blog. As always, we welcome your comments.
We are pleased to have this contribution from guest blogger, L. M., whose daughter lives with bipolar and borderline personality disorder, and substance use. The illness began to manifest when her daughter approached adolescence and continued into early adulthood.
Parenting a child during a mental illness is like being in the midst of a tornado. At first you have this beautiful person; an angelic child who gives you more joy than you’ve ever experienced. Life is beautiful through her eyes. Then one day, you feel a breeze approaching. It’s not unexpected although at times, it approaches in unexpected gusts.
It doesn’t feel unordinary. Perhaps changing patterns in the weather as the seasons shift. Then the breeze evolves into a wind. A steady, increasingly fierce wind. The wind starts swirling. You are swept up inside of it without a warning. You try to find your way out. But each gust pushes you in a different direction. Soon you lose your way. You doubt the path you should take to break free. Your confidence is shaken. Your compass is broken. You ask for directions but the answers are varied and jumbled. You find yourself running in circles wondering how to escape. But there is no escape. And the circle closes in. Finally, you manage to find a break in the force of the wind. You lift your head, wondering how you got swept up. What caused it? When did it all happen? Was it my fault? You look behind at the debris. The damage is immense and widespread. Your head is still swirling. How can you pick up all the pieces? And what will fit back together when you do? The form you had envisioned can’t take shape. It no longer exists. What to do next? Change the pieces. Make them clay. Let the clay be the new day. It may change every day. It may change every hour. You learn to accept the volatility, the constant morphing of a life you once thought was a straight line, a fixed object. And you observe. You listen. You learn. The tornado swirls, but you step aside. You let it be. Let it unfold on its term without being swallowed in the center. it’s the only way.
Being in public, even just standing in the grocery store line with her adult son, used to be embarrassing for Annie. Her adult son can’t be still. He’ll start bobbing his head. His body is jittery. He could easily be mistaken for a tweaker. She shrugs. “You get used to it,” she says. And he’s done worse.
Having a child who lives with mental illness feels sort of like being the parent who carries a newborn and two toddlers with head colds on the plane for a red-eye, only more extreme. Nobody wants to be near that mess, and everyone has an opinion. Also, there’s a lot of glaring.
In the stares and clucking of distaste that parents of atypical children often absorb, there seems to be a less than subliminal message that these parents chose this messy life and if they only desired things to be different, it could be so. As if these parents are weak. But parents of children with mental illness did not choose this club. Their child didn’t either. There are coping skills to be learned, but like those toddlers on a plane, you cannot control air pressure, or sinus pain, or always fix whatever is bothering them.
A person who lives with mental illness sometimes displays odd behaviors. A person with an injured leg may walk funny for a while and it’s the same for an injured brain; it’s not so odd when you think about it in that way, Right? What’s distinctly different is that a child’s mental illness challenges the stamina of parental love like nothing else. That’s in addition to judgment from others. Rebecca, one of our Behind the Wall parents, explained how excruciating it could be when her daughter, Stella, accused Rebecca that she was not her real mother. Stella’s father, Dan, recounts discomfiting conversations with Stella about the chip in her head. But for Stella, who heard voices clearly and sensed smells that others did not, the chip theory didn’t seem so far-fetched. It did make sense to her because her brain was feeding her different signals than what others know to be reality.
Simply spending time with a person who is experiencing a manic episode and/or psychosis presents challenges. It’s not easy. Depending on where a person is on the spectrum of recovery, there are frequent lapses in logical thinking that sometimes lead to risky behaviors and self-harm. Once, Annie’s son broke into a store after hours. He busted the door, got in, then realized he didn’t know what he was doing and left. He didn’t steal anything but damaged the door. His actions didn’t make sense.
Sometimes there are scenes. Ugly scenes. Jennifer, who lives with bipolar and borderline personality disorder, had developed a history of rages and alcohol use by the time she’d reached high-school age. This behavior was never permitted or condoned by her parents. In one incident, Jennifer had been drinking and was raging and throwing things at her boyfriend’s house. Her boyfriend’s parents banned Jennifer. Sadly, they must have also spread the word that she was out of control and it was about bad parenting. Jennifer’s sister, who had never been part of any such incident, was banned from spending time with the family that lived next door to the boyfriend. A loved one’s illness leaks into all aspects of family life.
As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them.
Only those who’ve parented a child who lives with serious mental illness can truly understand the challenges involved and the breadth of behaviors that arise because of the illness. Even for these parents, there is much experience required to distinguish between typical bad behaviors versus behaviors driven by the illness. They can’t possibly always get it right.
Parents of children who live with serious mental illness, like those beleaguered ones getting on a plane, aren’t asking for anything more than a little understanding. As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them. Living with a serious mental illness and being a parent/advocate has challenges that can only be fully understood by others living a similar experience.
Parents whose children live with mental illness aren’t asking anyone to sidle up to their chaos. These parents are also past wishing to be well-liked because major concerns are about keeping their child safe and stable. Parents aren’t asking for solutions, or agreement, or sympathy. Pity is not wanted. Just please don’t judge. And if one were so inclined, even a small gesture of support and kindness goes far for a parent enduring a journey where parental love is infinitely tested.
As always, your feedback is welcome.