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:
Eight things NOT to say to a parent whose child lives with serious mental illness and how to respond if you’re THAT parent.Posted: March 6, 2014
“What parent doesn’t feel their child’s pain?”
This is what Esme, a contributor / parent to Behind The Wall asks. As the saying goes, “We are only as happy as our most unhappy child.” Parents take on their child’s pain and usually wish they could take it all in their stead. Our parental vigilance is heightened when our child is sick; we fiercely monitor how he is treated physically and psychologically.
This is the agonizing reality for parents of chronically sick children: witnessing the suffering that accompanies an illness. In the case of mental illness, much of this pain derives from societal judgment. With that in mind, imagine saying to the parent of a child who lives with developmental disabilities, “Boy, your son is really, really dumb! Ha!” No one would ever say such a thing. But Annie, a contributor to our Behind The Wall project, tells us that the parent of a boy who went through school with her son once said, “I saw your son on the street downtown. Boy! What a wacko he is!”
As if Annie didn’t know her son has some challenges. Thank you, but yes, she knows his behaviors are sometimes a little odd.
Now, you may be thinking that the person who said such a thing is a clueless person who, if you were to meet, anyone would recognize her as misguided. But in fact, she is a respected body/mind health instructor.
As horrific as this comment may seem, sadly it is not an uncommon experience for parents of adults living with serious mental illness (SMI). But parents like Annie and Esme become accustomed to a society that really doesn’t understand. Esme’s daughter lives with bipolar disorder and borderline personality disorder. Even after being told her daughter was no longer welcome at a friend’s home, Esme is circumspect. Regarding how others perceive her daughter and judge her parenting Esme says, “I’m a private person and also the type of person who doesn’t really care what other people think. It’s not their life and good for them they don’t have these problems. That’s the way it is.”
Here’s a guideline one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers.
It is difficult to understand the reality of SMI. Those of us who have a loved one who lives with chronic mental illness all agree that others should be grateful not to know about the challenges brain disorders inflict on both the ill person and his immediate advocates and caregivers. Even non-nuclear family members who don’t live with the ill person don’t really get it. Showing understanding to a parent of a child with SMI does require some degree of delicacy, the same goes for addressing a parent whose child has died or has any other challenging disease. Here’s a guideline one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers. There is nothing you or anyone can say to make it better, so don’t try. But expressing compassion without judgment, is the gesture of support that is always valued.
Here are some common misguided comments similar to those parents often hear, and how to respond. Even in the tender place that parents reside, responding with honesty can assert one not as victim, but as caregiver and advocate as well as messenger.
1. Be glad it’s only bipolar and not schizophrenia
Response: Both bipolar disorder and schizophrenia are serious brain disorders and both are difficult for the person living with the illness.
2. She’s just a drunk!
Response: Yes, she has a dual diagnosis, which means she has a diagnosed mental illness and uses substances. She tends to medicate her depression with alcohol and it has become alcohol abuse, for which she is getting help.
3. Aren’t you afraid that he’ll hurt you? Aren’t you afraid to live with him?
Response: Not all people who live with mental illness are violent. I am not afraid of my son. He has never been violent. Actually, people with serious mental illness are eleven times more likely to be victimized by a violent crime than the general population.*
4. Isn’t mental illness just an excuse for bad behavior?
Response: Sometimes mental illness looks like ‘bad behavior’ to others. For instance, when police try to reason with a psychotic person who is hearing voices or experiencing delusions, the person’s behavior may seem odd or defiant. A person experiencing an altered reality may also be very frightened. The person cannot understand or respond to what is said because his inner process is altered, which makes him unable to hear the real world around him or process what is happening. Often, his response times become delayed also. He does not choose to have these experiences.
5. She’s really out of it.
Response: Yes, she has psychosis. Because of her brain disorder she sometimes hears voices, and her reality is different from ours at this time. She does not choose to have these experiences. What is most helpful to her is kindness and understanding.
6. You poor thing, having a child like that. How do you do it?
Response: It is challenging to advocate for an adult child with mental illness. There are no outward signs to indicate she needs to be treated with kindness. But there are stigma and myths that perpetuate misunderstanding about mental illness. The person who suffers most is the person with the brain disorder because she remembers herself as she was, and knows what she has lost. What’s painful for parents is that we cannot always help our child and sometimes others falsely judge us for our child’s illness.
7. How did this happen?
Response: Mental illness is a confluence of genetics, environment, and possibly drug use. It is a brain disorder that we parents didn’t cause.
8. Why won’t he just take his meds and stay in school?
Response: Some people who live with mental illness also have anosognosia, a common feature of brain disorders that affects the self-awareness of one’s own illness. This is the reason many who live with mental illness don’t believe they are ill and therefore, don’t think they need medications. Some professionals and advocates believe that if mental illness was not stigmatized, those who need treatment would be more likely to embrace it.
Here are ways to communicate your support for a parent who cares for a child with a brain disorder:
If you want to learn more
You can say:
- I don’t know much about brain disorders but explain her illness to me and tell me what I can say to her or how to act toward your daughter.
After learning about their child’s hospitalization
You can say:
- I’m sorry. Can I help your family while he is in the hospital? Can I walk your dog, or pick up food for you?
- Would it be ok to send your child a card in the hospital?
Show general concern
You can say:
- I’ve heard that it sometimes feels as though you have lost the child you once knew.
- What would be helpful to you at this time?
You can and want to offer your time or perform a helpful task
You can say:
- Any time you need to talk, I can listen.
- Any time you need a distraction, call me and we’ll go to a movie, for a walk, out for coffee…
- I am happy to offer my _______expertise.
Examples: cook meal, help navigate insurance, find a psychiatrist, research medications, walk the family dog, drive other children to school/ sports/ activities, help the family locate a Family- to -Family NAMI class or find other support.
And one more thought: If you’re a parent who’d like others— friends or other family members— to understand your difficult parenting journey, or you have a family member whose child lives with SMI, we recommend this blog. Yes, a shameless plug. But we don’t sugar coat anything here and it has helped our own family. Maybe we can help yours.
* Mr. Insel’s blog entry that we have cited can be found at: http://www.nimh.nih.gov/about/director/2011/understanding-severe-mental-illness.shtml) Thomas Insel, NIMH Director, January 11, 2011.
We welcome your thoughts:
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.
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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This blog entry is dedicated to the memory of Keith Vidal, and eighteen year-old man who lived with schizophrenia, and to his family who loved, cared, and supported him. In his honor, and the many others who unfortunately experienced similar fates, may we all continue to work toward bringing awareness and understanding about mental illness.
The following is a link to the CNN news story about his tragic death:
Finally, in some pockets of our society real discussions about mental health are being conducted, but as many who have a loved one living with a serious mental illness know, we’re not quite there. Nowhere close. And whether these discussions result in effective laws and policies thoughtfully addressing this highlighted issue is another matter. It’s a sad reality that violent tragedies, such as Keith Vidal’s unnecessary death and mass shootings of the innocent, were required to bring the issue forth.
And still, there remains a mental illness stigma and the myth that mental illness and violence go hand in hand. In an effort to address the insidious stigma and clarify the mental illness connection, advocates cite statistics illustrating that not all individuals living with a serious mental illness (SMI) have violent tendencies. In a National Institute of Health blog post of January 11, 2011, NIMH Director Thomas Insel clarified thusly:
People with SMI are up to three times more likely to be violent and when associated with substance abuse disorders, the risk may increase much further. But mental illness contributes very little to the overall rate of violence in the community. Most people with SMI are not violent, and most violent acts are not committed by people with SMI. In fact, people with SMI are actually at higher risk of being victims of violence than perpetrators… those with SMI are 11 times more likely to be victims of violent crime than the general population.
Mr. Insel goes on to explain that death by suicide is “the 10th leading cause of death in the United States” and that, while it is impossible know the specifics of each of these deaths, “it is safe to say that unrecognized, untreated mental illness is a leading culprit.”
Mr. Insel clarifies the mental illness – violence connection. But he barely touches upon the myriad of ways a person with SMI will unknowingly endanger oneself, probably because unless you have a loved one living with SMI, it is difficult to comprehend the depths of poor judgment a person can have. We are not referring to comically bad life choices, but rather decisions with painful and/ or fatal consequences. A person experiencing psychosis is incapable of rational thought and is victimized in varying degrees, the statistics for which are hard to calculate. Behavior and poor judgment associated with SMI make one vulnerable to manipulation and abuse by others, self-abuse (unknowing or intentional), and secondary physical illness.
We interviewed several parents who recounted stories about their very ill child who, while suffering psychosis, desires to wander homeless. Maika’s son, Riley, often went off medication and binge drank, during which time he’d prefer to live among the homeless. A “don’t hem me in” mode would take over. During these incidences Maika searched for him in vain, worried he would encounter law enforcement that may misinterpret his psychotic behaviors. She understands the reality that all too often a mentally unstable individual cannot process directives shouted by a police officer and instead either runs away or moves in a manner that suggests he is brandishing a weapon. Too often, these encounters lead to a fatality.
Annie recounts similar stories of her son’s wanderings. Sometimes he’d call for help by which time, he’d be experiencing severe psychosis; he’d be cold, hungry, and his feet would be so abused from walking they’d be swollen and infected. Delusional thinking led Annie’s son to commit a series of breaking and entering of local businesses. Annie doesn’t justify her son’s actions and in fact, she stepped up to replace the business owner’s door that he’d damaged during a break in. In that incident, once he got into the building he immediately realized he didn’t know what he was doing and ran off. Annie worries that police will misjudge her son’s behavior as violent with intent to harm others, and will respond by shooting him. Just such an incident occurred near her home when a psychotic young man was fatally shot by police. This young man was living with Annie’s son at the time of the incident. She is grateful, she says, that her son is small in stature. “It makes him appear less scary.”
The irony is that loved ones are often unable to get help from law enforcement to remove a clearly psychotic individual from the street and commit him into treatment.
The irony is that loved ones are often unable to get help from law enforcement to remove a clearly psychotic individual from the street and commit him into treatment. To enforce hospitalization, which would stabilize her son’s mental health and keep him safe, Maika is required to prove to law enforcement that her son “is a danger to himself or others.” Unless he verbalizes that he is experiencing suicidal ideation or attacks another person she cannot make the case. And yet, longer a person experiences untreated psychosis, the more damage is done to one’s brain.
Still, vulnerability comes in other forms. A father we interviewed talked about frightening voices that invaded his daughter’s mind, and sometimes gave her instructions to do harm to her loved ones. Another mother explained that her daughter’s delusions made her feel the need to deliver food to homeless people in the middle of the night in an unlit park that happened to be a cell reception hole and a gathering place for the homeless and drug users. There was no way to convince her adult daughter otherwise; it isn’t illegal but it was clearly bad judgment.
And there are still more dangers in the vulnerability of those who live with SMI. The nature of SMI is such that rationality is limited and paranoia, distrust, fear, anxiety, and delusions are in abundance. Some individuals with SMI latch onto irrational beliefs or adopt a philosophy or religion to an unreasonable degree; overzealous religiosity is not uncommon for individuals experiencing psychosis. Shortly after being released from a psychiatry ward, a young man in his twenties and still vulnerable, began to take advice from members of a cult who convinced him to lower his medications, drink only distilled water and his own urine. Still in a cycle of hypomania, his paranoia overcame him and he began to believe the cult members were out to kill him. Fortunately, he received treatment and was stabilized.
In all of these cases, what has saved these individuals who were suffering from poor judgment or full-blown psychosis is intervention by a loved one—in these cases a parent—and, or luck. Even with a parent advocating, it is a challenge to secure intervention for one’s child early enough and long enough, which is a whole other facet to the mental illness discussion.
When we talk about how to prevent the tragedies that are occurring all over the country all too often because a person with SMI was not heard, not helped, or somehow got access to an AK47, let us not forget the many self-inflicted tragedies happening every day. We don’t hear about most of these incidences in the media. What happened to Mr. Vidal happens every day. Most tragedies are quietly mourned. The victims of these incidents are the loved ones who desperately wish to protect their own too, in a system that often fails them.
Thomas Insel offers hope, though. Early intervention can be all the difference for some individuals living with mental illness. Discussions about SMI are about proper law-enforcement training, stemming violence, and creating more safe and compassionate society for all of us. Let’s keep talking.
Mr. Insel’s blog entry that we have cited can be found at: http://www.nimh.nih.gov/about/director/2011/understanding-severe-mental-illness.shtml) Thomas Insel, NIMH Director, January 11, 2011
As always, we welcome your comments:
What we learned from parents through our interviews for Behind The Wall is that parents and their child often have difficulty accepting a diagnosis of serious mental illness.
Sometimes the diagnosis comes with the mixed feelings of relief—for having a name for what it is that makes the ill person feel unwell, and also grief for what the illness portends. And because of the stigma of mental illness, even the most well-informed individual may choose to deny the diagnosis for a deep desire for it to be untrue. Most people understand to some degree that a mental illness diagnosis signifies a life with challenges, and for some, unnecessary shame.
But parents we interviewed can attest there is no shame in mental illness. A person with mental illness may have challenges but they are capable of living a full life, finding happiness, stability, and fulfillment. They are capable of meeting expectations, provided these are realistic.
How does one get there? As one mother put it, “As soon as I accepted it, my son’s life got better.” This is good advice for any parent. In life, most of us have learned that an obstacle cannot be overcome without identifying what it is, exactly, to be overcome.
When a friend of mine learned her newborn was diagnosed with Down syndrome, she was filled with grief. She hadn’t expected to have a child who would have such profound challenges. But years later, she and her husband stood before his classroom on parent night and explained their son had a syndrome, and yes he looks different, and please explain it to your child because that will make it more comfortable for everyone. There is nothing to hide, nothing to be ashamed about. And what she has observed is that the children whose parents are open about the boy’s challenges are the ones who are most accepting and, well, friendly towards him.
Well, Down syndrome is not mental illness. And maybe the rest of society has a more difficult time understanding mental illness. But the example is apt in this regard: being honest and informed with your child and those in your child’s life can help him or her accept the illness and manage it better. Being honest with yourself, as a parent, can help you be more direct in finding the best treatments and solutions to the difficult day-to-day challenges. Bianca, a parent we interviewed told us that when someone asks her why her son is not attending college or a colleague asks about her son, she now just says, “He’s been diagnosed with schizophrenia.” She says, “Let them deal with it!”
What parents need, and often want when their child has been recently diagnosed with a serious mental illness —any illness– is honesty. Reality.
Since we couldn’t say it any better, here’s Kerri’s advice. She’s the parent of a young man in his late twenties who was first diagnosed with mental illness at the age of twelve.
To a parent whose child has been recently diagnosed I would never say, “Oh, it’s going to be fine, don’t worry.” I would be empathetic. I would say, “This is hard. I remember when Thomas…” I would draw upon when Thomas was first diagnosed. “I was devastated. It was hard. Take it one day at a time. Time will tell.”
I would give advice on what to do: “Make sure you have a good psychiatrist with whom you can communicate well, somebody you can trust. You need support. These are the things you should be doing. I hope you can come back to our support group next month. Do you have good friends there for you?”
I would give tangible advice on how to take care of himself or herself as a parent, make sure they have the information they need. If there is a good book for them, I would lend it. Websites, articles. I might even say, now that I know more about the medication piece, “Medication is really tricky…if you are ever concerned that your child is either over-medicated or on the wrong medication, you should watch for these signs…”
I would give concrete advice. I would never be like, “Oh, don’t worry. It’s all going to be great, wonderful. I’m sure your son or daughter will overcome this.” I wouldn’t go there. I’d be in the here and now. I would never, ever say anything negative because I would never want to discourage a parent. I mean, there’s always hope and there are some people who do fine.
And what do parents of children diagnosed with serious mental illness want from the rest of us? To listen. To understand that parenting for them is different, poses more challenges than most parents have. They need us expect them to be late to things, not be able to show up sometimes. But most of all, they need people to be there for them.
More from our amazing super-parents to come…
As always, we are interested in your comments: