Breathing

Our guest blogger tells us how challenging it is to live “in the moment”.

Photograph courtesy of Robert Cutten

Photograph courtesy Robert Cutten, 2013 http://www.bobcutten.com

I hold my breath waiting. Panic stuck in my throat, wondering if this is beginning of another crisis my son is creating. Is he going to experiment and lower with his meds and become manic? Will it be like the time he became manic and paranoid?

That time, after alerting the police that the CIA was watching him, he threw out all his trophies, awards, photos, well-written essays, things representing highlights from his past, from before he became ill. Later, I was able to retrieve most things, buried deeply in the garbage and sludge-covered. He packed the essentials: a gallon of sterile water, one change of clothes, sketchbook, a few dollars and not much more. He set out to live on the streets so the CIA couldn’t study him. My two sisters and I drove down every street downtown, tracing the path to his familiar haunts, hunting him down as if he were a runaway puppy.

We found him, euphoric, ready to enter the homeless shelter. He admitted he hadn’t slept in a week and needed help.

The chaos he has created in the past stems from his decision to walk into a bar and drink a beer, and his distorted notion that he is a ‘normal guy’ who can drink a beer. One beer, and be fine. But for him, one beer leads to a weeklong, or months-long binge, blackouts, ruined relationships, lost job, failed college semester, and all this followed by shame and guilt, and the long haul of putting it all back together again.

So, I would hold my breath waiting, knowing what had been built could all fall apart. In one beer.

But while holding my breath, I forget the gratitude for the previous three years of calm and serenity his recovery has brought to our family. I forget gratitude for the hard work and day-to-day struggle that is his, just to live a meaningful life with solid relationships, work, and balance in his life. I forget how much work he does to earn a moment of joy, and happy family moments.


It’s not healthy to stop my life, become paralyzed in fear…


It’s not healthy to stop my life, become paralyzed in fear; I know this. And I’m not fun company. I’ve watched my husband sleep, eat well, go to the gym, work, and put his worry into neat compartments that only occasionally leak out. I will never know how he has been able to do this, but we are all different.

At the Al Anon meetings they tell me to let go and live my own life. Of course I know this is what one should do, but letting go and taking care of myself requires more discipline than holding my breath. Taking care of myself, over worrying for my child, is not natural for mothers.

But how long can a person hold their breath?

I came to realize that I cannot continue to live this way, starving myself of oxygen, denying myself my own life. I need to be strong for that moment he reaches out, asking for help. I needed to change, and it can only come from me.

I found a therapist who knows about addictions and mental illness. She helped me grieve the loss of my son, the easy son I once had; the son who won trophies, wrote essays, and had healthy relationships. To allay my fear and angst, I began to meditate, sometimes a walking meditation on the beach, or in the woods. Exercise and sports had always been a part of my life and it was time to incorporate these activities back into my life. I needed to live more consciously, beginning with eating well, not mindlessly consuming a pint of cookie dough ice cream in one sorrowful sitting.

The most difficult part for me was becoming social again. I had lost relationships during the chaotic times of my son’s illness. Let’s face it, people don’t understand, and I wasn’t fun to be with anyway. I made new friends who are also in the club of knowing mental illness and addiction. These friends could hear what I was saying without flinching or pitying. I don’t want pity.

What has helped give me perspective and insight is being well informed. I read and learned everything I could about the dually diagnosed, those with serious mental illness and substance use disorders. I found my local NAMI to be most helpful, especially the Family-to-Family class that my husband and I attended together. I found support and community there too. I also called upon my faith, that faith I had felt abandoned me during the hard times.

I feel connected to my son, and this is key. Feeling connected to our son gives us the best chance that he will turn to us when he is failing. It’s the best hope we can have. Feeling connected enables me, ironically, to let go a little more. Knowing that he is aware that we will always support his recovery and never judge his journey is the best insurance that he WILL turn to us on his own volition. Because ultimately, his recovery must come from him. I now recognize that holding my breath or living in fear will not give him tools to manage his illness.

How we stay connected is by expressing our deep appreciation of his strengths and struggles, and telling him frequently how much we respect his hard work. Believe me, I want to keep him in a bubble to protect him. But I don’t pity him or coddle. I support his efforts. I’ve learned the importance of letting go and allowing him to make his own choices and decisions, because I won’t be around forever to protect him. I enjoy his humor, his new quirkiness, and his artistic passions. There are many things I want for him but he may not want these things for himself. I’ve worked on learning to stay quiet, enjoy the moment, and find gratitude. I am grateful he’s alive and has integrated into his community, and is moving forward in his own way with his own volition.

Sometimes, I slip, and find I am holding my breath: after learning he’d “had a beer with friends,” or one recent night when he didn’t return home. The difference now is that I recognize when I am not living in this moment, but rather flashing back to the chaos of the past, and worrying about things that may or may not ever happen. My physical health is much better when I live mindfully, with balance, and joy. Every day offers the chance to find joy. I sound like a bumper sticker. A few years ago those sayings evoked anger rather than peace for me. I don’t want to be in this club of parents whose children struggle with a dual diagnosis. I want to be a parent of an adult child whose biggest problem is finding the right career, or breaking up with his girlfriend, or learning to budget his money.

But this is where I am in this moment.

Your comments are always welcome:

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A little help here?

Albert Seuss, by Mark Abercrombie

Albert Seuss, by Mark Abercrombie

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.


‘Tis The Season…

 

PumpkinPie-2Parents 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.

emptyPie-1

    Happy Thanksgiving to our readers.  We are genuinely grateful for your support.

 

 

 

 

 

 

 

As always, your comments are welcome:

 


Why a fear of labels can cause more damage than calling it like it is.

I just say, ‘he has schizophrenia.’You know, it is what it is!

poppy

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.

 it is what it is

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 dangers of “coddling” a child who lives with serious mental illness. Five ways to be supportive instead.

My biggest mistake was trying to fix everything for him. He never learned how to do it on his own.

"Big Boy" courtesy of artist Mark Abercrombie

“Big Boy” courtesy of artist Mark Abercrombie

This is what a mother of an adult son who lives with serious anxiety and depression now says. From an early age, Jonathan* seemed more sensitive than other kids. During adolescent and teen years he showed symptoms of anxiety and depression. His mother tried to resolve issues for him because mothers want to make things better. But in doing so, she’d give him the solution rather than allow him to make his own way through problems. She did the heavy lifting to get him out of his darkness. She’d say, “Let’s go for a walk.” Or, “How about I take you somewhere.” “Maybe we should watch a movie.” In other cases, she’d shield him from potentially difficult situations. She tried to rescue him. “That was my mistake,” she now admits.

… finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty. 

Protecting a child from physical harm and nurturing through difficult emotional benchmarks are givens in a mother’s job description. But finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty. Parents we interviewed for Behind the Wall described atypical children who almost always had real limitations in social and school settings caused by anxiety or over-sensitivity. Sadly, it is not uncommon for a spouse or the child’s other parent to disagree about where the line of competency exists, creating friction in the home and between family members resentful of “special treatment”. Disagreement between parents about a child’s competency can have devastating consequences. Expectations that are too high can be overwhelming and unduly stressful. Low expectations send the message that parents lack confidence in their child. An awareness that parents are disputing one’s competence can also create guilt and self-esteem issues.

Madeline Levine, psychologist and author of The Price of Privilege and Teach Your Children Well advises, “Never do for a child what he can do for himself”. This includes navigating on one’s own through difficult emotional territory with support from parents. A parents’ job is to prepare a child to live successfully in the world. Experience is truly the best teacher, and parents are uniquely qualified to provide such opportunities for trying new physical, mental, and emotional challenges. Coddling, by definition, prevents experience and important failures from which one learns. Being supportive means presenting a child with choices and allowing him to gracefully fail and succeed at his own pace along the path he chooses.

For a person who lives with mental illness, though, the line of competency can shift day-to-day, sometimes hour-to-hour depending on the person’s current state of recovery. Sometimes, that line moves backwards.

Here are ways our Behind the Wall parents show support and avoid coddling:

Be honest. Being honest with a loved one about her mental illness and her current state of recovery is the crucial first step toward her recovery. Being well informed by credible sources about the diagnosis and seeking evidence based treatments are necessary for recovery. Ultimately, a person cannot reach recovery without moving toward it on his own volition, which may require professional motivational help. Managing an illness successfully requires knowing facts. Shielding facts in an effort to protect another from the stigma of mental illness only serves to obfuscate the path to recovery.

Give your child responsibilities. Everyone needs responsibilities. Having a goal each day fosters success over time, even if on some days the goal cannot be reached. As one Behind the Wall parent says, even though her son was not yet able to live on his own, he wasn’t broken; he could still clean his dishes. It just may take a little longer for him to remember to do it. As Dan says of expectations for his daughter who lives with schizophrenia, she is responsible for living the best way she can. All of us owe ourselves the self-respect to work every day toward learning better management of one’s own health; for a person living with mental illness it is certainly more challenging than most and often means taking medications and recognizing when treatments are not working. A person may do better one day than others, and may even fail, but everyone has the responsibility to try again. And loved ones must provide support everyday without judgment or criticism.

Teach strategies rather than provide solutions. Keep an ongoing dialogue. A person living with a brain disorder may not always be capable of rational or logical thinking. Sometimes, a person may believe that loved ones or even non-existent people are trying to inflict harm. There is no amount of rational talking that can convince a person who is experiencing psychosis otherwise.

But that doesn’t mean a parent or trusted loved one shouldn’t keep trying to show—by asking questions, for example—how to logically work through paranoid or disjointed reasoning. When her son is experiencing psychosis, Bianca points out behaviors and symptoms that indicate irrational thinking, and helps him to see he is not well. When doing well, she describes the behaviors that reflect failing mental health. She will tell him, “When you were in the shower for six hours, that was not healthy.” She will ask him, “When you’re not doing well, what are some things you can do?” A constant dialogue about recognizing symptoms of one’s worsening illness may be helpful to a person who is in the long and difficult process of learning to manage his own illness. Bianca encourages her son to take a daily inventory of symptoms and think about what has worked for him in the past and what he can do in the future. More than once, Bianca’s son checked himself into the hospital.

Provide an escape plan for potentially stressful situations instead of not trying at all. Along the lines of teaching strategies, avoiding any situations that may have potential for stress can limit an individual’s engagement with community and chances to develop new skills. But stressful situations without an escape strategy can have devastating consequences for a person living with mental illness. Sometimes, social events are unavoidable, or an individual desires to try a new experience. Discussing an escape plan in advance empowers an individual with agency to determine when a situation becomes overwhelming and to act upon it. Planning ahead develops problem-solving skills for managing the ever-changing limitations of one’s mental illness. Behind the Wall father, Dan, encouraged his daughter to pursue a demanding education while emphasizing the always-available option to drop a class should she begin to feel overwhelmed. Bianca, a Behind the Wall mother whose son lives with schizophrenia, prepared her son in advance of attending a wedding. If the crowd became too much for him, she explained, it was acceptable for him to go outside and take a walk or go home. Now, when they go out to dinner, he gets up and goes outside if he needs the escape and nobody is concerned, critical, or judgmental.

Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience. 

Welcome failures as opportunities to learn and never be judgmental. Perhaps the most difficult guideline to follow when parenting any child, but especially one who lives with persistent mental illness, is allowing for failure. A person with brain disorders frequently faces situations in which “failing” may pose lethal risk. Failure to manage one’s illness can lead to a psychotic episode, possibly resulting in self-harm or victimization. Assertive Community Treatment (ACT), an evidence-based treatment, provides people with mental illness a safe environment to try new life skills. Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience. One example of ACT service is “supported employment” in which a person’s employer and case manager work in cooperation to increase the employee’s success. The case manager facilitates understanding between employer and employee, assists in working through obstacles and potential job challenges such as communication problems, stressful hours, or short-term memory deficits common for individuals with brain disorders. ACT provides similar support for college students managing communications with instructors and stressful course loads, for example. By providing well-trained advocates to teach and reinforce practical life skills and strategies, ACT decreases day-to-day logistical load for families who are hesitant to allow an adult child to fail.

By the time Jonathan, whose mother admitted she had not allowed her son to fail, reached his early twenties, an age by which he could have begun to understand how to manage his illness, he continued to experience increasingly severe and unmanaged anxiety and depression. He was not progressing in life as he thought he should. He sought help from an uninformed practitioner who did not offer talk therapy but prescribed marijuana** for severe anxiety, which over time, compounded his issues. Though one of Jonathan’s parents is a physician, he refused to listen to advice from either of them. Fortunately, Jonathan finally recognized his anxiety and depression was debilitating and he had not acquired effective tools to manage his illness. He agreed to seek treatment from a doctor recommended by his parents and his life has been improving.

*Names and identities are changed to protect anonymity of the (usually adult) children of Behind the Wall parents

 

**Studies show that marijuana use is “…potentially dangerous for people with mental illness.”

From National Alliance on Mental Illness web site (www.nami.org):

The overwhelming consensus from mental health professionals is that marijuana is not helpful—and potentially dangerous—for people with mental illness. Using marijuana can directly worsen symptoms of anxiety, depression or schizophrenia through its actions on the brain. People who smoke marijuana are also less likely to actively participate in their treatment—missing more appointments and having more difficulty with medication-adherence—than people who abstain from using this drug.

The relationship between marijuana and psychotic illness, specifically schizophrenia, has been studied for many years and is receiving increasing publicity in the mainstream media. Certainly not all people who smoke marijuana will develop schizophrenia, but people who are at risk of developing this illness—including individuals with close family relatives that have severe mental illness—will be more likely to experience psychosis if they are using marijuana. In this population of individuals, people who regularly smoke marijuana are diagnosed with schizophrenia at a younger age, hospitalized more frequently for their illness and are less likely to experience complete recovery even with high quality treatment. This is particularly concerning, as approximately one-third of people in America with schizophrenia regularly abuse marijuana.

From the Royal College of Psychiatrists website (www.rc.ac.uk):

There is growing evidence that people with serious mental illness, including depression and psychosis, are more likely to use cannabis or have used it for long periods of time in the past.  Regular use of the drug has appeared to double the risk of developing a psychotic episode or long-term schizophrenia. However, does cannabis cause depression and schizophrenia or do people with these disorders use it as a medication?

Over the past few years, research has strongly suggested that there is a clear link between early cannabis use and later mental health problems in those with a genetic vulnerability – and that there is a particular issue with the use of cannabis by adolescents.

 


Behind many doors and walls.

Image credit: Alex Nabaum for the Washington Post

Image credit: Alex Nabaum for the Washington Post

The stories are heartbreaking. And they must be told.

Parents want to help a child or loved one who is ill. This is a given. Expected. And yet, in helping a person who has serious mental illness, there is an obstacle at every turn. As one of our Behind the Wall parents says about advocating for her son, “I wasn’t out to harm him, but because of all the laws, I wasn’t allowed to help him.” Most innervating are the restrictive laws—different in each state—for obtaining involuntary commitment for psychiatric treatment for patients over eighteen.

We ask the question: what is the ethical treatment of people who don’t know they have mental illness?

The heartbreaking story in the Washington Post on June 28th Behind the yellow door, a man’s mental illness worsens, by Stephanie McCrummenis the story of many families—about eighteen million in the US. It illustrates the common journey and we recommend you give it a read. Pass it around. Then talk to your US and State Representatives about restructuring more humane laws.

Here is the link again:

http://www.washingtonpost.com/national/behind-the-yellow-door-a-mans-mental-illness-worsens/2014/06/28/28bdfa9c-fbb5-11e3-b1f4-8e77c632c07b_story.html

We welcome comments.

 


“Dad! Dad!” On being helpless to protect your child.

fear-child

I’m sitting in the baseball stands watching my son’s game when a young boy’s anxious voice calls, “Mom! Mom!”

Though a parent is acutely attuned to her own child’s distinct cry, our biology snaps us to attention when we here these words, even if the voice only marginally resembles one of our own, which is why all the women and most of the men swung their gaze toward the boy. It was the anxiousness in the boy’s voice that got to us, a tinge of worry and need that reaches right into your gut and shakes your brain stem.

I don’t remember what the trouble was, but a few of us began to stand, unconsciously moving toward the boy because we would have willingly helped him until his parent surfaced because it was not the kind of sound a child makes when whining for a soda or irritated by a little brother. In his cry there was vulnerability, a sense of loss and, “I’m scared.” There seems nothing more powerful than sounds of a genuinely frightened or pained child. Nothing.

Countless parenting books offer advice on everything from breastfeeding to curbing tantrums, but the one thing we don’t need to learn is how to know one’s child is hurting emotionally. We feel it ourselves, deep into the marrow of our beings, even if we don’t know how to help. Parents have an inexorable need not just to nurture and protect but also to make everything ok. To fix it. Ask any parent of a child who has suffered and they will tell you, “I wish it were me instead of him.”

When one’s child calls out for help, we become single-minded, our adrenaline surges readying for the battle to protect our young. We may even knock over a few parents in our path to get to our own. For me, when that frightened call comes, there is a wee sense of relief, or gratitude that my child had the wherewithal and trust to call upon me. Me! It’s selfish, and maybe misdirected pride to be chosen to protect my most precious thing in life.

Imagine how heartbreaking it is, then, and counter to our biology when a child won’t ask or take a parent’s help and instead puts himself in danger. Parenting an adult child with persistent mental illness is frequently excruciating for this very reason. The illness teases and manipulates every fiber of the parenting coda to protect and just fix it.

Kelly Thomas

I’m thinking in particular of Kelly Thomas, a twenty-seven year-old schizophrenic man who was experiencing psychosis. His parents loved him, kept their home open to him, tried their best to keep him in treatment. But Kelly was sick and preferred to wander the streets, a common theme with people suffering with psychosis and schizophrenia.

Thomas was brutally beaten to death by Fullerton, California police officers for not cooperating. And “brutally beaten” doesn’t really describe what happened to Thomas, who was unrecognizable when the officers were done with him. The officers apparently lacked any compassion or understanding of serious mental illness, and had become impatient with Thomas’s inability—due to his easily detectable psychosis— to follow instructions to, “Put your hands behind your back.” The beating has been captured on video and it is clear Thomas is confused by the instructions given to him when he says, “Like this? Is this what you want?”

Also in this video, one too painful for me to watch to completion, are the clear cries for help when he calls out, “Dad! Dad!”

The calls to his father are crushingly heartbreaking. He is afraid, and anyone able to watch the video wants to rush to him, and save him. His feeble cries remind us that he is someone’s child. He calls out to a father he trusts to help him, who has earned this trust that Thomas can even recognize and remember while in a psychotic state. He calls to a father who is sadly out of range to come to his aid. There is nothing more devastating than knowing your child called out to you and you weren’t there.

And sadly, for those who have children living with serious mental illness, stories like Kelly Thomas’s are not uncommon.

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Comments are always welcome