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.
As always, your thoughts are valuable to us:
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.
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
Comments always appreciated!
This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
Comments are always welcome:
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.
Parents we interviewed for Behind the Wall often spoke about difficulties during the holidays. Regular life is disrupted. There’s pressure to be happy, c’mon, it’s the holidays! For some, there is unresolved family conflict. Whatever the reasons, there is added stress, a key ingredient in disrupting anyone’s mental health.
Personally, my favorite holiday is Thanksgiving. It’s the day we cook, eat, and hang with loved ones and close friends. It’s sharing in sustenance rather than materialism. Thanksgiving is about being genuinely thankful and also pulling up a chair to your own personal pumpkin pie. Keeping it simple and local is how our nuclear family does it. But not everyone has someone with whom to share the holiday or is fortunate (or selfish enough) to keep it simple.
And there’s the rub. Knowing many families have a loved one fighting on foreign soil, or fighting serious illness, or just plain fighting internally, can make it difficult to celebrate. Feeling grateful can feel like gloating when one considers day-to-day challenges in others lives.
And yet, those who’ve had the most difficult challenges are those who can teach a thing or two about gratitude. One of our Behind the Wall parents tells us that beginning November every year, she becomes more vigilant than she is normally (which is more than most), watching for signs that her son is stressed, or beginning a cycle of psychosis. She fears his psychosis could lead again to jail and weeks of horrific treatment. This fear is justified. When her son is well and safe, she is truly grateful. I believe her because she understands life’s difficulties.
Another Behind the Wall parent, Esme, has a daughter whose illness is the underlying cause for dangerous behaviors that among other events, lead to a near-lethal cutting incident and an overdose. Esme says the experience with her daughter has given her great empathy. For which she is grateful. She doesn’t expect those who don’t have mental illness in their family to understand, and says, “Good for them they don’t understand.” Though, it would be great if our society could learn to accept those who live with mental illness, Esme rightly focuses on how lucky she is that her daughter is kind and loving.
Then there’s Behind the Wall’s Bianca, who reminds us to find the moment of “normal” in all the chaos of parenting an adult child with persistent mental illness. Even if it’s a small moment. Maybe it’s thirty-minutes she and her son share making dinner. Maybe it’s laughing at a joke. You can find the moment of normal if you try, she says.
What these generous, inspiring parents express is the true meaning of gratitude. For these parents, gratitude comes from accepting that life is not a string of good moments with a few hiccups along the way. To paraphrase my dear friend, a practicing Buddhist, life is struggle, work, and hope, with wondrous glimmers of grace (I loathe to use the vaguely defined term, “happiness”). There’s no question that some are born with more talent, or into families with more resources. We can feel grateful that some of these gifted folks do help others, and feel empathy for those who choose not to do so, for their lives are not rich in what life has to offer. Maybe what defines a lucky or blessed person is one’s ability to appreciate that precise moment when good does comes along, to recognize the appearance of grace. No matter one’s circumstances, perhaps the greatest gift of all is the ability to see and experience genuine gratitude.
‘Tis the season to see grace and find gratitude, even if within the smallest moment.
Happy Thanksgiving to our readers. We are genuinely grateful for your support.
As always, your comments are welcome:
I just say, ‘he has schizophrenia.’You know, it is what it is!
Throughout the process of creating our collection of stories for our Behind the Wall project, most parents we interviewed had already passed through the hurdle of acceptance, or as one very astute parent clarified, she’d reached “radical acceptance”. (See post entitled, “Radical Acceptance” dated June 26, 2013.) Most of the parents we interviewed were living in the fluid state of “What do we do now?” And in the same way a yogi practices yoga, rather than ever fully mastering it, these parents practice the daily inhale/exhale of living with grief while also caring for one’s own well being. We’ve said it many times before: these parents are inspiring.
During one interview, however, a parent described her child’s illness without offering to share the psychiatrist’s diagnosis, insisting instead, “We don’t use labels.”
The stigma attached to serious mental illness is detrimental to those diagnosed and their loved ones. “We don’t use labels” means, “We won’t really say what the illness is because I don’t think my child can handle knowing it and neither can I. I don’t want others treating her differently.” This way of thinking is not uncommon when parents first learn their child’s diagnosis.
A diagnosis of a serious mental illness such as bipolar, schizoaffective disorder, schizophrenia, or serious depression, often comes after challenging chaos and endangering incidents. Frequently, the most accurate diagnosis is preceded by several near misses. Settling on a correct diagnosis can be a complicated process. So when a parent hears, “Serious mental illness,” it makes sense to wonder, “Is that really it? Are we jumping to conclusions?”
These are sentiments many Behind the Wall parents harbored while moving toward acceptance. After her son was diagnosed, Bianca would sometimes think, “Schizophrenia? Maybe he’s just having a bad day. Maybe he just smoked too much weed.” Or, she’d say, “Maybe it’s bipolar. Because bipolar is more socially acceptable than schizophrenia!” All the while, she knew her son was very ill.
But not addressing the illness directly inhibits acceptance by loved ones, the caregiver, and most critically the ill person. An individual living with serious mental illness simply cannot reach recovery without accepting the diagnosis and treatment required to effectively manage the illness. Maybe a parent refuses to “label” because she doesn’t want her child to believe he is flawed or less of a person. One may fear the child will use the diagnosis as a crutch or excuse. A parent doesn’t want her child to be treated “differently.”
Life is more difficult with any untreated illness.
Here’s something to consider: a person living with untreated mental illness already knows she is different in some way. Life is more difficult with any untreated illness. And those who are in recovery almost always recognize the importance of owning their illness and calling it what it is: a challenging, incurable condition that was not caused as consequence of their own doing.
And while society and the media are still slow to come around to speaking accurately about mental illness, when a person’s immediate community accepts the illness without confluence of inferiority, so will the diagnosed individual. When loved ones rally to support a lifestyle conducive to managing the illness, that is, treats him (differently) with perhaps more compassion and understanding, his life gets better the same way a person managing diabetes must be supported in his lifestyle requirements.
Decades ago, our mother reminded us, that a person would never announce his cancer diagnosis, likely because it was a death sentence. Also, it was terribly impolite. But today there are good treatments and website pages where a person announces his illness, his stage of recovery, and welcomes supportive posts from loved ones. Even money for healthcare is accepted. As it should be.
Today, serious mental illnesses can be managed too. There are set backs. But those who have the best chance for recovery are those who own the illness, accept the diagnosis and treatment. As it should be.
Let’s talk about mental illness in a real way. There is hope. It’s a serious illness that needs proper due.
Your comments are welome.
The portrayal of Adam Lanza by his father, Peter, in Andrew Solomon’s The Reckoning, dated March 17th in The New Yorker is eerily familiar to a parent whose adult child lives with serious mental illness such as bipolar disorder, schizoaffective disorder, or schizophrenia. While Adam Lanza was diagnosed with autism and later obsessive-compulsive disorder, the deep pain, depression, self-loathing, isolation, and anguish Adam seemed to have been experiencing is similar to symptoms of serious mental illness. Peter Lanza, according to Solomon’s article, now believes that his autism diagnosis masked mental illness.
Mr. Lanza granted many long interviews (six hours in length over the course of six months) with Solomon because of his well-earned reputation of journalistic integrity, including the manner in which he respectfully represented parents of criminals for his book, Far From The Tree. Solomon’s aim was not to present fodder for societal judgment, but to provide insight about this troubled boy, his family life, and attempt to resolve the mystery around the Sandy Hook massacre. But in his interview with Katie Couric, Solomon notes that he came to realize we will never know Adam’s motive for the killings at Sandy Hook and further explains to Terry Gross in his Fresh Air interview on NPR (air date March 13, 2014) that what triggered Adam’s rampage “will forever remain a mystery.” The purpose of the article, he tells Couric, is to provide accurate information about Adam Lanza from a viable close source, and with hope, prevent a similar event in the future.
For his part, in granting interviews, Peter Lanza does not appear to be seeking forgiveness or sympathy; Lanza desires to assuage victims’ pain and provide the facts about his son’s troubled life. Mr. Lanza, distraught by his son’s actions, bravely admits that, though he loved “this weird little kid,” he wishes his son “had never been born”—a shocking statement bandied about by media for obvious reasons. Nobody ever says that about one’s own child. But it’s understandable, sort of, for a parent whose child inflicted unfathomable pain on others, or for one who has seen his child suffer from serious, oft times self-injurious mental illness.
But there’s another message Peter Lanza wants to get off his chest even more: that what happened to Adam, that he became a disturbed young man who could commit an unimaginable act, can happen to anyone’s child. But I don’t think Lanza’s message is accurate. And it may be misguided to perpetuate it without clarification.
Peter Lanza wants others to know that no level of devotion can prevent one’s child from becoming afflicted with mental illness.
Where Peter Lanza’s statement rings true is that no parent has full control over illnesses that are caused by a confluence of factors including genetics, environment, and, or substance use. Second, when an illness affects the child’s behavior and impacts the whole family, it can be devastating for any family, not just the Peter and Nancy Lanza’s of the world. And third, mental illness does not discriminate across gender, ethnic, religious, or socio-economic lines. Peter Lanza wants others to know that no level of devotion can prevent one’s child from becoming afflicted with mental illness.
But Lanza’s statement, that anyone’s child could turn out like Adam, or even Solomon’s observation to Terry Gross that his own “sweet children” could grow up to represent so much evil, is a potentially damaging message contributing to the mental illness stigma that quite possibly prevented appropriate treatment for Adam Lanza in the first place. While the chaos and disruption of living with a seriously mentally ill person as experienced by the Lanzas exists behind the walls of an astonishing number of homes throughout the world, only a small percentage of the mentally ill are violent. Statistically, a person with mental illness is more likely to be victimized by another or self-harm than inflict violence on another.
Both Couric and Gross noted that Peter and Nancy Lanza, Adam’s mother, though divorced, worked together as any good parents should in seeking professional help for their son from prestigious medical institutions. The question both interviewers ask is why didn’t these professionals see that he had violent tendencies? Solomon counters that, while Adam Lanza had a disturbing, known interest in violence, citing a character in a book he created as an elementary student and the postmortem discoveries of his activities online, his attraction to violence was understood to be within a normal range for many young boys “who grow up to have normal lives.” Perhaps what should have been asked was, so, why didn’t these professionals identify the severity of Adam’s mental health issues or have him hospitalized? Because according to Peter Lanza’s description, Adam Lanza suffered deeply for a significant period of time. Why, when Nancy Lanza was complaining that Adam was breaking down crying and incapable of functioning, was it not suggested he receive inpatient treatment?
Sadly, this is the vexing complication of which parents whose children suffer with mental illness are dangerously familiar. Peter Lanza claimed that deeper issues were masked by the autism diagnosis. And in fact now claims he won’t accept that Adam wasn’t mentally ill, because how could any sane person commit such an act?
But with regards to why no professional identified the severity of Adam’s illness, It is entirely possible and not uncommon, according to parents we interviewed for our story collection, Behind The Wall, that when Adam met with professionals he was able to “fake” being well. He may not have disclosed symptoms he knew were out of the ordinary. Many parents note their child can pull it together for a doctor or law enforcement for short periods of time. If Adam couldn’t accept his autism diagnosis, he sure wasn’t going to let a doctor witness symptoms of mental illness. Without written consent, privacy laws (HIPAA) would have restrained doctors from speaking directly to parents about Adam’s health. If Nancy was hiding the dark challenges of her own life and Adam’s behaviors from his own father (i.e. when Nancy was only able to communicate with Adam by email), then would she disclose this to a therapist?
So, why would Nancy possibly choose not to pursue a more adequate diagnosis? Better treatment? Solomon has astutely observed that parenting decisions fall into the categories of make things peaceful now or allow things to become more difficult in order to have a better long term solution and that Nancy seemed to almost exclusively choose appeasement now likely because of how difficult her life had become with Adam in general. Parents whose children live with mental illness describe chaotic homes, and feeling mentally, physically, and emotionally exhausted all the time. So, it makes sense that appeasing Adam’s idiosyncrasies (she had to walk a certain way, he wouldn’t allow her to lean against walls) in many ways, was the path of least resistance.
No one ever wants to admit one’s child has a serious mental illness because of the stigma. Even when symptoms are clear, which Peter acknowledges they were. For many, autism is less stigmatizing than schizophrenia. And unless a parent accepts a diagnosis, their child never will. Compounding this damage is that statistically, those who live with mental illness are more likely to reach recovery when there is a community—family members for support. No one ever recovers from any illness without first accepting the diagnosis and those living with mental illness almost always require a caregiver / advocate.
But even if Nancy Lanza understood her son’s illness, he was clearly not cooperative and would not participate in therapy. She may have been able to commit him to an inpatient treatment facility. But doing so would have required innumerable steps and consultations for a boy who wouldn’t talk to her. Parents have told us that they feared pushing for involuntary commitment because, as in Nancy’s case, the parent is the only connection with the ill person, and making him angry to the point of cutting off relations could result in a steeper, more devastating decline; a life on the streets, homelessness, was Peter Lanza’s fear. Nancy, herself, had mentioned to a friend that she feared she “was losing Adam.”
At some point Adam Lanza had been prescribed the antidepressant medication, Lexapro, from which Adam suffered extreme side effects. But there is no mention about trying another medication, which is the usual course for those seeking treatment for a brain disorder. Did the parents give up after that? Did they know that there’s a trial and error process with medication? The Lanzas didn’t seem to know, and Solomon’s piece does not address that obtaining a mental illness diagnosis and an effective treatment plan is almost always a long and arduous journey of trial and error. Ask any of the parents we interviewed. And even after a diagnosis is determined, there are many adjustments to the treatment plan along the road to recovery.
It’s possible that Adam’s parents could have continued working with him to accept that he was unwell, that the frustration and anger he felt could have been alleviated with professional help, but clearly, this is easier said than done. Adam Lanza seemed to suffer from anosognosia, a feature of serious mental illness in which the patient cannot see how ill they are. Convincing an ill person to willingly partake in treatment is an important piece of the recovery puzzle.
Looking back it is clear that Adam Lanza needed mental health treatment and though no one can accept his actions as justifiable, it is becoming increasingly clear how effective treatment eluded Adam Lanza and his family.
But to say that anyone could find oneself the parent to a child who grows up to act out a violent rampage does not quite sit right.
Every time a person goes on a murderous rampage, parents whose children do live with a serious mental illness…simply cringe.
Every time a person goes on a murderous rampage, parents whose children do live with a serious mental illness that includes features of psychosis, simply cringe. They cringe because they know these events reinforce the myth that all individuals who live with mental illness have the capability for such atrocities. This is simply not true. And I don’t think Solomon believes this either.
It sometimes feels like we’re talking about the Lanza’s so that we can point at Nancy and Peter Lanza’s parental failings. But passing judgment is of no value. While Nancy’s experiences of feeling imprisoned in her own home, and the chaos and isolation her son created goes on behind the walls of millions of homes throughout the world, mass murder is not usually part of the equation. If learning about Adam Lanza from his father offers no key to unlock the mystery behind his motive to murder and provides little palliative for Sandy Hook victims, then, to rephrase Couric’s question, what does Peter Lanza’s story provide for us?
Solomon’s comprehensive discussions with Peter Lanza should be seen as a giant step toward understanding that yes, any parent may find oneself in a complex parenting dynamic. This giant step is only worth Solomon and Peter Lanza’s generous contribution if the next steps lead to a more compassionate understanding of mental illness, an awareness of the importance of early and accessible treatment, and that parents like Peter and Nancy Lanza are not alone.
Your comments are welcome: