Just Read This.

Teresa Pasquini’s magificent, tender, searing essay below speaks for so many of us. I’ve seldom read a more encompassing and truth-telling message from anyone in our sub-nation. I applaud the subtle and not-so-subtle political and cultural indictments in it as well. Godspeed, eloquent amiga!

My thoughts this 4th of July with a variety of pictures of my beloved son over the years showing his love of life and freedom. “Lets Free Danny with a system of Housing That Heals”

The 4th of July is a good day to talk about freedom. It is the day we Americans cherish and celebrate freedom. It should also be a day to reflect on those who are not free in America. I have a special memory that I will always hold of traveling to Washington, DC on the 4th of July to fight for the freedom of #FamiliesLikeMine. I talk about that trip and the history of that work in this post, https://www.facebook.com/teresa.pasquini.3/posts/10213321797638040. It is a good reflection to hold in my heart as I think about the intentions of today’s freedom fighters.

Today, there is a national focus on the freedom of one person, Britney Spears. The “Free Britney” campaign has created a national myth-making media machine that excludes some of the most vulnerable members of our society. My son is one of those who have been excluded. As the mother of a beloved son who has been on a “conservatorship” in California for approximately 20 years, I have been waiting to weigh in on the Britney Spears conservatorship controversy until I could analyze the information objectively. I have been too triggered and traumatized by the sideline commentary of people who don’t know what the hell they are talking about and their armchair analysis is ill-informed and dangerous. It needs to be countered by a mom who knows the truth and can defend conservatorships as a freedom-giving and life-saving tool for many families and their loved ones.

Yesterday, I took the time to read multiple articles, talk to friends who act as their family members’ conservator, and reflect on the past 20 years that my son and our family has experienced the “conservatorship continuum” in California. First, I read the New Yorker Magazine article, https://www.newyorker.com/…/britney-spears…, which is actually one of the better reported. It clearly demonstrates a disturbing picture of a young Britney who was used and abused by many predators and by a system intended to protect her. I won’t do a sideline judgment of her family’s intentions because I didn’t walk in their shoes. But I have walked in similar shoes and can comment on my own experience.

The “Free Britney” movement has nothing to do with my 20-year mission as a mother to “Free Danny.” You cannot and must not conflate and equate the two-track conservatorship laws in California. You cannot mix up the medical system, behavioral health system, guardianship, legal, and justice systems to create reform for some while others suffer needlessly. I have watched advocates and legislators do this for years. I have watched Disability Rights of California do this for years. This has made necessary reform impossible for people who are disabled by their “serious mental illness.” Now is the time for getting real reform for all. And all must mean all.

This past year, the research of Dr. Alex Barnard shined a light on how the California Conservatorship continuum lacks authority and accountability. His work has sparked conversation and understanding about the grave inequity of deciding grave disability in California. His work has also demonstrated that too often families like mine must put our loved ones and communities in danger in order to get them help before they harm themselves or others. He offers solutions in his paper, https://drive.google.com/…/1H-hKxnd…/view that has been widely shared and will influence necessary change.

Dr. Barnard has also weighed in on the Brittney Spears movement yesterday in this Sacramento Bee OpEd, “Free Britney, but CA must also reform conservatorship laws …” I agree with most of his points but don’t believe that the solutions for freeing Britney, Danny, my brother(also previously on an LPS Conservatorship) and possibly my 90-year-old mom are as straight forward as he suggests.

Those of us who may face possible capacity issues with our elderly parents don’t need extra hoops to jump through if and when we try to protect their health and safety. We must not create laws based on the worst actors in our society who take advantage of the most vulnerable. Most people do the right thing within the current Probate laws. So, I don’t know that making Probate Conservatorships as hard to access and maintain as an LPS Conservatorship is the answer. More accountability for both is definitely warranted.

This Disability Rights OpEd offers solutions similar to Dr. Barnard’s. https://time.com/…/britney-spears-conservatorship…/ along with this one, https://www.dailyjournal.com/…/363398-spears…. But, again, the laws that govern different disabilities are being conflated and equated. We cannot define freedom in the same way for all disabilities. And we have to stop implying that the same solutions are appropriate for all.

We need a system of solutions that is flexible, funded, and full. We now have a system of care that is not full or complete for those people who ARE gravely disabled and can’t get treatment before tragedy. The lack of capacity standards for the SMI population is not adequately being considered in reform conversations because we treat some disabling brain illnesses as a “mental/behavioral” issue rather than a medical illness. We must no longer cherry-pick which brain illness deserves a right to treatment and dignified housing or who is left to die on the streets with their rights on.

My Danny has been on an LPS Conservatorship for 20 years. While it did save his life and his civil rights were overprotected in many ways, there was nothing civil or right about the care, treatment, and support he received. The current laws did not protect his right to health, safety, and freedom in the appropriate “least restricted environment.”

While on conservatorship he has been forcibly locked away in faraway institutions, placed in solitary confinement, shunned, punished, and suffered in too many ways. And, while people talk about using conservatorship as a last resort, they need to know that families like mine DID use it as a last resort while being forced to make our loved ones gravely disabled and homeless. It is a cruel and usual process protected by too many and it lacks the clarity of the broken mental health system’s reality.

As the author of the Facebook blog, “Broken”, recently said, “Anyone can present as clear for the few minutes she [Britney] was speaking to the court. Without a professional who has examined her, we can’t really know how stable she really is. And just because she can make a speech to plead for her “freedom” doesn’t mean she can manage her finances. This decision is bigger than any of us can know. We only see what the media tells us.” There is that measure of sanity at the moment that looks only at imminent risk rather than the historical course of the illness. Capacity must be measured using a big picture, not a snapshot.

Appearances are misleading. 18 years ago, my Danny appeared well, both psychiatrically and physically, was taking his meds, had a room in a board and care and so his conservatorship was dismissed against our family wishes. That very night he stopped his meds. About a week later, he was on the BART tracks threatening to jump. He was 5150d (one of the 40 5150s he has endured) again and put back on an LPS. He has remained conserved for the past 18 years.

The conservatorship is what has enabled Danny to be free and stay free. He is adequately protected when the conservatorship renewals take place. He has psychiatrists who work with him to discuss his current state. He has a mom and dad who he relies on for advice. He has a public conservator who he trusts. He is represented by a public defender who is knowledgeable in conservatorship law. He has the capacity now to know that he needs support and help. However, he doesn’t understand why there is still no system of Housing That Heals to provide the medically necessary continuity of care to protect his freedom and not risk his dignity again should he go off of his conservatorship.

We talked about it just last week. He called and said, “Mom, if I go off conservatorship will you and dad help me?” I said, “Of course we will always “help” you, but we can no longer house you and be your sole caregivers. We have tried to do that off and on for over 20 years while ON an LPS Conservatorship and it didn’t work for any of us.” He said, “I understand mom. I will stay on it.” He might change his mind between now and when that decision is made by his doctors and the courts later this year. I will support him to learn about his options and I will fight for his right to live in as much freedom as is possible. I am a freedom fighter, too.

“Free Britney?” Probably. Britney has a house, food, and estate worth 60 million bucks to prevent her from becoming gravely disabled again. She deserves her freedom but should have a clear shared decision-making plan moving forward that will protect her health and wealth. I want that for her and for Danny. They both have movements fighting for their rights. Danny’s is different. It is a Moms On a Mission movement for a right to live in Housing That Heals. This movement is growing.

Housing and healing have been my mission for years. It is a mission that is ignored by many progressive Californians. The progressive movement elevates the right to shelter and the right to housing above the right to treatment. They protect one’s right to refuse treatment even if you lack the capacity to know you need it. A recent article by Heather Knight drives the issues home for the liberal /progressive California, San Francisco’s mental health care system fails two men: one killed, the other his allegedkiller.https://www.sfchronicle.com/…/San-Francisco-s-mental….

San Francisco Supervisor Mandelman is quoted and is right. There is nothing progressive, civil, or right to see here. “It’s the most dystopian version of progressive politics,” Mandelman said. “We’re all about civil liberties, but we don’t make the investments in basic services for sick people. We have this entirely negative version of liberty, about being free from things. But your freedom to live a decent life with dignity? We apparently don’t care about that at all.”

What would be progressive is if we would stop treating SMI as a “behavioral problem” instead of a brain illness. I don’t see that movement going on in California. Just more of the same. A lot of talk about peer support, which is great for many, but not all. Where is the talk about medical support in treatment facilities with compassionate providers who are given a continuum of services to support their patients upon release?. That continuum must include conservatorships as a prevention and intervention program for people like Danny who need more time to heal than his brain allowed him to understand in 24-72 hours. He understands now but it should not have taken 20 years of forced suffering to “Free Danny.”

As many know, Danny continues to improve while living in the community and he remains on an LPS Conservatorship. As it has for the past 20 years, it will be up for renewal again later this year. We as a family will consider all options in a shared decision-making process with Danny, his doctors, and his conservator. We continue to be grateful to Contra Costa Health Services and the Contra Costa Public Guardian’s office for partnering with our family over the years to help Danny live his best life. We hope that partnership will continue whatever happens next on Danny’s recovery journey.

I hope that the media, disability rights organizations, public defenders, legislators, social justice reformers, housing rights, and other mental health advocates will not forget to fight for Danny to live his life in health, safety, and freedom. And, I hope that they will join the Housing That Heals movement that seeks a system of care that will never risk anyone’s dignity by letting them be homeless, failed, and jailed. And, that they will protect the life, liberty, and the pursuit of happiness of all. And, all means all.

Happy 4th of July 2021. Let freedom ring today and every day in the USA. P.S. Thank you Kathy Day for your help with thinking this difficult subject through and for your great editing support!

Teresa Pasquini

OUT OF THE PAST+

At age 15, in 1998, Kip Kinkel gunned down his parents and two school classmates and wounded twenty-five more people at a school in Oregon. Today, serving a life sentence, Kinkel has broken his long silence. Will his insights penetrate the fog of ignorance and indifference toward serious mental illness? It would be pretty to think so.

I was transfixed when I opened up the Huffington Post on June 13 and found the story that I attach below. I had mostly forgotten about Kip Kinkel; but I had built the first chapter-draft of No One Cares About Crazy People around his psychotic murder-spree of twenty-three years ago, near the dawn of our present mass-murder era. More specifically, I’d built it around the coverage of that spree on a 2000 edition of PBS’s Frontline.

File:Kip Kinkel.png
 Kip Kinkel being escorted by police officers. Image: WikiMedia Commons

I eventually discarded that draft in favor of a new beginning. I realized that starting my book with a description of such an atrocity would risk reinforcing the myth that serious mental illness is synonymous with violence. Yet I kept the draft in my files. That draft also is attached. 

A lot has happened in the world of mental illness over those twenty-three years, by no means all of it good. Yet to re-read the HuffPost story–centered on interviews with Kinkel over several months–is to be reminded how primitive public perceptions of schizophrenia remained near the turn of this century. 

One year after Kinkel’s rampage, teen-agers Eric Harris and Dylan Klebold slaughtered fifteen people, including themselves, at Columbine High School in Littleton, Colorado. 

I listened to news accounts of Columbine on the radio of a rental car in my home town of Hannibal, Missouri, where I had returned to gather material on a pair of cold-blooded killings by teen-aged boys for my book, Tom and Huck Don’t Live Here Anymore. Several commentators attributed the Colorado murders to the fact that Harris and Klebold . . . wore trenchcoats.  Two years after Columbine, I published a piece in The Atlantic about the Zantop murders in New Hampshire. Two adolescent boys from a small town in the northern part of the state knocked on the door of a beloved Dartmouth academic couple in nearby Etna, whom they did not know, and stabbed both to death. In none of these stories, including my own, were the terms “schizophrenia,” “psychosis, or “serious mental illness” mentioned. Those who do not remember the past . . .  https://www.huffpost.com/entry/kip-kinkel-is-ready-to-speak_n_60abd623e4b0a2568315c62d

“I CAN’T BREATHE”–AGAIN (AND AGAIN AND AGAIN)

Another slaughter of a mentally ill Black man as he fought for breath and screamed for life, this time in a North Carolina jail, at the hands of men with uniforms and badges. And tasers and pepper spray.

I am beyond sick of this. A couple of weeks ago I reached out to another centrally connected American political family, struggling once again to offer a concise, yet comprehensive, yet concise, yet comprehensive, yet . . . you get the picture . . . compendium of what minimally needs to be done to clear out the massive pain and injustice and obstinate ignorance that has kept “crazy people” enshrouded for, you know, like totally forever. Once again I drew on the recommendations of leading advocates in the crusade, and psychiatric professionals, and . . . and I’ll be candid: not a murmur in reply.

There’s never a murmur in reply.

I don’t think that substantial reform of mental healthcare is ever going to occur in the United States.

Video Footage of Death of Black Man in South Carolina Jail Stirs Outrage

GRAPHIC WARNING: Bodycam footage released in death of Jamal Sutherland

NO FORGIVENESS NEEDED!

Psychotic killers? Just dump them in Bedlam Asylum, circa 1337.

Charles H. “Chuck” Ramsey is a retired law-enforcement professional of unusual distinction. At 71, he has won praise for his service as the commissioner of the Philadelphia Police Department, as chief of the District of Columbia Metropolitan Police, and as a young officer in the Chicago police department. In 2017 he joined CNN as a commentator, where he has earned acclaim as a blunt and fearless truthteller.

Charles Ramsey

All of which makes it especially painful to report that on Tuesday, Commissioner Ramsey deepened a grievous gulf of ignorance in America’s concept of mental illness. He opined in an on-air discussion that it was “totally unacceptable” for Al Aliwi Alissa Ahmad, the suspect in Monday’s massacre of ten people in a Boulder, Colorado, to have gone and done that. No excuse for it! And no forgiveness!

No kidding!

Ramsey made his declaration in an interview with the CNN news host Brooke Baldwin. Here is what he said, in full, on the topic of “forgiveness.”

“I mean, I feel no empathy for this guy at all, so forgive me [sic] for that, but I just absolutely don’t. No, no forgiveness needed. There is no excuse to go and kill people. There are many people who suffer from mental illness. They don’t do this kind of thing. I mean, that’s just—it’s just totally unacceptable. So, I don’t go for it. Not for a second.”

Charles Ramsey

The cluelessness, the beside-the-pointedness, of this little tirade are—well, they are totally unacceptable. As was the glazed reaction of Brooke Baldwin, the “Peabody Award finalist” who did not bother herself with a follow-up question such as—oh—“Commissioner Ramsey, would you give us your definition of ‘mental illness’?” Or, “Why do you think that some psychotic people ‘do this thing’ while others, many others, don’t?”

Brooke Baldwin on set in DC. Credit: Patrickbenson96 via Wikimedia Commons

Baldwin, by the way, opened the show by confiding to her fans that she would soon vamoose to promote her new book about “women unlocking their collective power.” A grateful nation holds its breath.

Do I sound peevish? Very well, I sound peevish. Clarity and precision are essential in discussion of mental illness, and clarity/precision were exactly what neither Ramsey nor Baldwin provided their viewers in this soiree. Their careless self-absorption is typical for much of what passes for media and political wisdom in the wake of an atrocity such as Boulder. And Atlanta. And Springfield, Missouri. And Midland, and Odessa, and . . .

What am I getting at? I’m getting at this: both the pontificating Ramsey and the passive Baldwin seemed content to agree that killing people is a very bad thing to do, just a totally unacceptable thing, and shame on the wussies and sob-sisters who would garland the killer in forgiveness. Killing while mentally ill? Boo hoo. Full stop.

Here are some generally accepted facts, simple to understand: facts that would reduce fatuous and inept declarations by public figures and combat the toxic, ingrained superstition that “mentally ill” equates to “monster in need of chains”:

Fact One: The seriously mentally ill (schizophrenia sufferers and others with chronic brain diseases) are statistically no more prone to violence than the general population.

Fact Two: “Forgiveness” or its absence is irrelevant in the cases of psychotic killers. Their affliction has robbed them of impulse control and any grasp of moral responsibility. They’re not “bad.” They’re mad.

Fact Three: There is a remedy, or a partial remedy: Professional treatment. Professional treatment (diagnosis, a medication regime, and ongoing therapy, commenced as soon as possible after psychotic symptoms appear) can stabilize the chronically disordered mind and greatly reduce the impulse to harm oneself or others.

Fact Four: Contrary to a destructive myth just now making the rounds, the evidence that Al Aliwi Alissa Ahmad was able to plot his rampage is not proof that he was sane, and therefore not entitled to supervised hospital care instead of criminal incarceration. Insanity is not a form of stupidity. People in psychosis are often ingenious in tossing their medications, covering up their symptoms, and plotting their lethal agendas. Thus, proof of insanity remains an uphill battle in the courts. In Colorado law as in other states, “Every defendant is presumed sane. The defendant carries the burden of introducing evidence of insanity. Once such evidence is introduced, the burden is on the prosecution to prove sanity beyond a reasonable doubt.”

(I am in debt, for the insights above and several others, in part to the pre-eminent California advocates C.J. Hanson and her sister Linda Privatte.)

Fact Five: Despite massive efforts, America remains mired in mental-illness illiteracy. Few people like to think about it, much less learn about it. The consequences—to public health, to those caught in the criminal-justice system, to families, and to the national treasure—are enormous. If someone at the pinnacle of law enforcement—a Charles H. Ramsey—can publicly demonize a killer ensnared in psychosis, just imagine the destructive ignorance throughout the echelons below him.

The country needs to be educated in mental illness. Its leaders and spokespeople need to educate themselves.

“I would, however, love to hear about mental health”

Yes, YES, and YES!!!

Every syllable in the column linked below has the ring of urgent necessary truth. And one paragraph in particular explodes off the screen like a distress flare on a dark ocean.

Robert Aaron Long. Image via Atlanta Police Department

The writer is Monica Hesse, the novelist and star columnist for the Washington Post. The title of her piece is “Things I do not ever need to hear or read about a shooter again.” It is in reference to the massacre last week by Robert Aaron Long of people, mostly Asian women, in Atlanta.

With restrained contempt, Hesse ticks off a partial list of the inanities, evasions, and pseudo-diagnoses that clot the accounts of this and other mass-shooting atrocities: The shooter was having a bad day. The shooter’s family was shocked. The shooter was a churchgoer. The shooter . . .

I read and I nodded. And yet I kept wondering: will she get there, will she get there, will she get there . . . ?

And then in the thirteenth paragraph she got there:

“I would, however, love to hear about mental health. Let’s have that conversation. Let’s have symposiums and colloquiums and serious studies and interventions — my God, let’s talk about mental health. But I do not need to hear about it from the politicians who, as soon as they are given the opportunity, slash community health budgets, show more fealty to insurance companies than their constituents and refuse to address the poverty and other underlying conditions that can make it difficult or impossible for Americans to seek quality mental health care.”

There it is. The Great Unspoken. Mental illness as a possible trigger of violent crime. 

It’s hardly as though serious mental illness—psychosis—is a taboo subject per se. Books, news outlets, and advocacy groups are tackling the topic with increasing frequency and candor, and that amounts to a societal breakthrough. Yet roadblocks remain in place to deflect critical areas of understanding. Some are understandable—and still misplaced.

No one wants to sanitize an act of lethal brutality by explaining it away as (merely) the result of a chronic brain disease. One of my closest friends, an intelligent and gifted journalist, emailed me just last week: 

“I have a mixed reaction to coverage of the Atlanta shooter. Is he mentally ill? Maybe… but it’s still a hate crime, and clearly did target Asian women. And that can’t get lost right now and rationalized as ‘just’ the deranged action of a single man. Not with the rampant hate that Trump and his ilk have unbottled. He’s a religious nut job, but whether he has [a serious mental illness] . . . hard to say.”

Of course it’s hard to say. It’s impossible to say from a distance, and irresponsible to say without proof. And “proof” in matters of mental illness is elusive, to put it mildly.

But here is the distinction that I believe Monica Hesse is making, and that more journalists and experts should be making: To raise the question of psychosis in a violent crime is not the same as to assert it. 

I have scanned hundreds of internet sites in the week since Long, 21, murdered eight people, including six Asian women, at three massage spas in Atlanta. The stories repeatedly cite a handful of possible motives: it was a hate crime. It was part of the rising rate of hate crimes against Asians. Asian women. Robert Long was having girlfriend problems. Long was having a bad day (this from the sheriff in charge).

Still, the only times the possibility of mental illness came up, the theoretical context was “sex addiction,” Long’s own explanation. (The Diagnostic and Statistical Manual of Mental Disorders does not list “hypersexuality” as a mental disease.) At 21, Long was in the prime demographic for the onset of schizophrenia, a genetic disease apart from other complaints of the mind. Yet I have seen no speculation that Long might have been psychotic (the most dangerous symptom of the disease). Far from “rationalizing” his lethal actions as psychotic, the stories I’ve read do not mention psychosis at all. Why not?

Dj Jaffe

Misplaced ethical restraint? Most responsible people in the media, like my friend, are reluctant to imply that this brain disorder and violence are bound together. And indeed they are not bound together. The recently departed Dj Jaffe, a statesman of mental-illness advocacy and policy research, specified again and again that it was the untreated and unmedicated victims of madness who posed danger to others—and themselves. Jaffe’s message scarcely seems to have penetrated beyond the “archipelago” of the suffering and (some of) their caretakers. 

Long’s parents stated that their son did not take medications; nor, despite increasingly erratic behavior, was he diagnosed.

Please mark me well. I am not declaring that Robert Aaron Long is schizophrenic. I am not suggesting that this and the other theories are mutually exclusive.

What I am declaring and suggesting is this: severe mental illness remains at once a dreaded and a formless presence in American thought. Dreaded because it is a malady on a par with cancer. And formless because (as with cancer) stigma has retarded education, policymaking, and enlightened criminal-justice reform in regard to it.

Monica Hesse’s words remain as succinct and powerful as anything I have contributed here:

Let’s have symposiums and colloquiums and serious studies and interventions — my God, let’s talk about mental health.” And: “But I do not need to hear about it from the politicians who, as soon as they are given the opportunity, slash community health budgets, show more fealty to insurance companies than their constituents and refuse to address the poverty and other underlying conditions that can make it difficult or impossible for Americans to seek quality mental health care.”

Yes, YES, and YES!!!

https://www.washingtonpost.com/lifestyle/style/bad-faith-talk-about-shooter/2021/03/19/17d86fa2-8838-11eb-bfdf-4d36dab83a6d_story.html

A MOTHER’S PLAINSONG PLEA FOR HELP

You can find Debbi Anderson’s wrenching cry from the heart farther down this post. I have left the two parts exactly as I found them on a private Facebook discussion site. They are long and messy. That’s the thing about mental-illness narratives. They don’t clean up well. They shouldn’t clean up well. “Polishing” them, “editing them down,” “trimming” out “wordiness,” “sprucing up” bad diction—these are forms of murder within this genre. This kind of sanitizing leaches out the violated humanity in the original words. It distills the raw passion down to journalese.

And that is a core problem with writing about mental-health issues, whether quoting from a frantic mother or composing expository prose about the nature of brain disease: it comes out either too long or too sterile.

Debbi Anderson

Here I am going to risk both the former and the latter. I’m going to give you the context of Debbi’s two messages. (There is some repetition.) And then I am going to turn things over to Debbi, who has given me her permission. In a later post, I will examine some of the public-policy roadblocks to relief for her and her stricken son.

Set aside some time. But please try to read every word of Debbi’s stream-of-consciousness burst of despair. At a minimum, it will (re-)introduce you to a world that most people shrink from even thinking about. If a miracle occurs, it might infuriate you into joining the ranks of the reform advocates.

Debbi Anderson is a working-class woman who lives in Wichita, Kansas. Her son Devin has spent 18 of his 36 years in a fog of severe schizophrenia, and the voices in his head have driven him again and again to the streets (see the “missing” poster link below), to addiction, to jail, and to at least ten suicide attempts: “dangerous” behavior. Dangerous “to himself and others,” as the bloodless bureaucratic bromide has it.

Debbie, whose photographs show a blonde woman with large, penetrating eyes, has stood with her son all this time, tortured with worry as he has shuttled in and out of “care centers”—another bloodless bromide. (Some work well; others—well, read Debbi.) She has divorced his father and remarried, to a man who means well for Devin yet understandably lacks a clue as to how to maintain a bond of trust with him. 

Things have hit rock bottom. Devin has been evicted from his latest hovel, a “rat drug infested apartment” in Debbi’s description, that his latest caseworker found for him. Why? Because he is uncontrollable. He is uncontrollable because the voices in his head ordered him to go off the stabilizing medication that once worked for him. The bloodless bureaucratic bromide-term for this condition is “anosognosia”—lack of insight. The bedraggled bailiwicks of American mental healthcare are suffocated under bureaucratic jargon and acronyms.  And this is probably one big reason that no one cares about crazy people.

Here is Debbi:

I have attempted to post something about three times on here and every time I deleted it! I have ADHD, so if I jump around on here you’ll know why LOL I feel like you need to know that before you read this! My son was diagnosed with schizophrenia at the age of 18 is 36 now most of my family was worried about what the neighbors would think! My mother was extremely narcissistic  so I know I get no support there! It has been 18 years of hell! he has a severe case! When he was diagnosed I was relieved in a sense I could finally put a name to what was attacking my son!! But I went from saving him from himself to having a gun pulled on me trying to get him out of a motel I was young and stupid back then that isn’t gonna happen again! but phone calls at night needing a ride because got beat up dont know how many times going out on the streets panhandling staying in the worst dirt bag place you could find. He had at least 10 suicide attempts when he goes off his medication the voices just torture him! Constantly went missing here in Wichita Kansas and then got so delusional and manic he thought that $.50 the rapper stole his lyrics He tried three times to make it to California and the third time’s a charm! Made it to California went missing for over a year. I searched every day it was hell! I was not sleeping throwing up malnutrition losing my hair (I’m sure some of you have been thru this!) After the year was up my mind was taking over like it was trying to prepare me for that awful phone call or knock on the door we all dread! And then a phone call came in, from a hospital in south-central LA it was my son finally someone called me and asked me if I had a son named DEVIN! How he ever survived that i’ll never understand it had to be a God thing! He wanted to stay there! So in order for me to get the help that he so desperately needed I had to give up my rights so we could be a ward of California by the way one of the hardest decisions I ever had to make doing that! He started the revolving door in California just like he did here in Wichita Hospital group home run away hospital group home you know the routine for years and until he met a doctor that really helped him! Who would’ve thought an old-school drug like haladol would help him so much one shot monthly XR! So he’s in the same group home for quite a while he started making phone calls to me back home in Kansas and he sounded more like MY SON!! than ever since the day he was diagnosed!!! Still had attitude problems but nothing like it used to be not going out on the streets and doing God knows what and doing things that I wish I never new about! He was somewhat stable so he decided he wanted to come back home! Everybody else was thrilled I was scared don’t get me wrong I miss him so much! But the thought of having him back here in my face and going through hell again I wanted to believe that everything was gonna be OK so desperately! deep down inside I knew it wouldn’t be! I have been with an amazing man going on eight years he is my support system he is my world he just could not understand why I wasn’t so excited I felt guilty don’t get me wrong I want to see him so bad I really missed him it had been over seven years since I saw my son! so I set up a meeting with his group home and we had a plan the team met and we had an exit strategy I laid down my boundaries and my rules you know nothing too terrible no drinking in my house and no drugging and you will let me know where you’re at! Because I have worried enough through the years to last one person 20 lifetimes! But the first several months went really well I’ve bonded with my son since the first time he’s been diagnosed we were getting close he still had some issues but like I said nothing like before! Then when he got comfortable back home he started getting Like he had ants in his pants! 

When ever he had money in his pocket the streets with Would call him! countless nights talking him out of using drugs the voices telling him to stop taking his shot then he meets a girl that’s an alcoholic and all goes downhill from there starts taking off I have no clue where is that then he decided to ask his case worker for an apartment and they put him in the most rat drug infested apartment they could find he got evicted because he can’t even take care of himself he’s so delusional because he’s been off of his shot for quite some time now which should’ve already been in the case file at the mental health place that he goes through I know there’s like a huge file on him but nobody bothers to look at that it’s already been proven he can’t live alone he can’t shower now he doesn’t even know he needs to! he barely eats! out on the streets living homeless panhandling for money and doing other things on the streets I don’t even want to talk about they are so horrible! This is what happens when the voices told MY SON not to take his monthly shot The mental health services here has told me they’re going to quit him if he doesn’t make contact with them and work on his goals. My son is out of his mind right now! he doesn’t even believe I’m his mother! How can an irrational person do what their supposed to do?!

I need help before the suicide attempts start again! By the way I am off his release so that makes it twice as hard! I know that we all have different issues and that we’re all on different levels my son is on an extreme level right now he’s very sick! He puts himself in the most dangerous situation he can find! I call that a danger to yourself I still can’t get him hospitalized! He’s been back for a year and a half and stayed on his medication for probably half the year since he came back and he’s only been hospitalized twice and never got to stay they sent him home and he was still delusional well they didn’t send him home they dumped him off at a shelter!! The system is so broken they have nothing to protect our severely mentally ill!! 

(Later post)

Yes! I was on the website today advocates for the mentally ill on Facebook and I read the blog with the sister that had a mentally ill brother and when I read it it was like I was reading about my sons life! I posted on there several times about my son and I think you even commented on one of the posts my son is 36 he was diagnosed with severe schizophrenia When he barely turned 18 so I have been doing with this hell for 18 years! When I read that she said she’s been doing this for 33 years i was like oh my god that’s gonna be me! I have been told has been the worst case of voices a doctor in California told me that several years ago! I’m from Wichita Kansas and my son was delusional and off meds several years ago thought the rapper 50cents stole his lyrics, so he tried three times to make it to California It scares me to think what he would’ve done if he did find him he was missing for over a year I searched every day he was found over a year later in south-central LA how he made it that long alive I will never know!! so anyway he decided he wanted to stay in California which they have a better mental health system than Kansas and more funding for the mentally ill so he stayed there a few years and decided he wanted to come back home because he was stable finally found medication that would work Every month he is supposed to take a shot of haldol XR it is The most lucid I have ever seen my son! But eventually those damn take over and they tell him not to take the medication! We have done revolving door run away , state hospital group home Rinse and repeat! you know throw in a couple jail times in there! I have spent his entire life practically saving him from himself I have had a gun pulled at my head shot at trying to get him out of a dangerous situation with gang members! Did that when was when I was young and stupid LOL that won’t happen again! I’m just blown away he got that far Wichita Kansas to south-central LA On Greyhound bus But he was manic and full of energy as he’s gotten older his illness so much worse! Attempted Suicide at least 10 times he gets off his meds for a long period of time voices are going to take over and literally torture him he will shoot anything in his veins there any kind of drug because he’s convinced it makes the voices go away when in reality it makes it amplified! He has a CaseWorker I’m not on any release he refuses to sign it! Years ago I wouldn’t be able to get him talked into going to the hospital as he’s gotten older he acts like I’m not his mom and he literally tells me you’re not my mom I don’t know who you are he doesn’t know who I am he’s so far gone he told my daughter the other day several months ago that he was an alien and he can’t ever take a shirt off because he has a hoses all over his body! He says he doesn’t even know his name he said he is black when reality he’s white The Services here we have for him are horrible They been just been letting him fend for himself he has met criteria for a danger to himself several times over but here it’s not actually trying to commit suicide they don’t think it’s a danger to himself when in reality he’s doing a slow methodical suicide he doesn’t care if he lives or dies! If he was walking down the street and there was a bunch of mean guys with guns and on the other side it was a bunch of nuns wanting to help him he would go over to the bad guys with them every time! Straight now he doesn’t shower and clean he was living in filth downstairs to meet her but he left the door unlocked one day and it was ungodly the mental health passivity here in Kansas has hardly any funding so they find a cheap drug infested apartment the last place in today well he got evicted there and now he’s on the streets hustling money running around with murderers prostitutes and drug dealers They all take advantage of him he won’t let any of us near him he runs from a course I am like the devil because I’m the one that wants to get him help when you’re that ill anyone who wants to get him help is the enemy! It’s heartbreaking he gets worse every day anyway there’s so much more but I’ll stop there I know it’s rambling and confusing I’m sorry also that’s why I want to him on the shot because he wouldn’t take his regular tablets but now he won’t even show up to get a shot it’s time for his shot this month again he has not been on it for four or 5 months The voices in his head Literally torture him! If he stays off his meds for too long he starts contemplating suicide! it’s been 18 years of hell! But I’ll never give up! The mental health care facility here where his caseworker is told me yesterday that if my son doesn’t start taking his medication and working towards his goals and if he doesn’t stop missing all his appointments they were going to take him ofc there caseload and he will no longer be a part of their agency they are worried about liability because he’s out there on the streets if something happened! unbelievable! I am so upset about that it seems like the more severe they get the worse they’re treated legally community wise and everything else! No so he can’t think rational how would he even know to go to his appointments he doesn’t even think I’m his mom! So tired of everyone thinking that they’re capable of talking or thinking rationally at this point! Thank you again for letting me share it’s good to get the stuff out of me I cry a lot I feel so defeated! 

A WORKSHOP FOR MOTHERS OF THE STRICKEN

The mothers of mentally ill children exist in a special Hell-Within-a-Hell.  

I can attest that this is true for many fathers as well. Yet evidence from many sources shows us that it is the mothers who suffer the most. Sadly, they often struggle alone, as many of their husbands withdraw from the the horrors and the responsibilitiers of coping with such a calamity. 

My friend, the psychologist Lotte Weaver, understands this. Lotte and her husband, the wonderful singer-songwriter Ray Weaver, are the parents of an afflicted daughter, Savannah. The three of them remain a tightly bonded family unit.

Lotte and Ray have shepherded Savannah through a precarious but successful stabilization. Lotte has turned her energies and her formidable intellect to mental-health advocacy. Her latest project, an online workshop for “for mothers of sensitive and stricken children,” as she phrases it, will go online March 8–International Women’s Day.  

I strongly recommend it for all mothers of such precious children. Lotte’s own mission statement, below, expresses her mission with more eloquence than I can muster.

https://www.facebook.com/lotte.weaver

So, something happened today.

And I am writing this post with tears streaming.

It is what happens when we are met in our vulnerability. Met as who we are, with ALL that we are. Understood in ways that only someone who has gone through similar experiences as our own can understand.

My friend – although we have not yet met in person – colleague and fellow parent of the severely challenged, Ron Powers, wrote the kindest post to me.

He wrote me on a day where I felt so vulnerable, and he could not know that his message reached me as I needed it most.

He is, like me, an advocate for better conditions (much better) for the mentally ill and their families. He wrote the outstanding and heartbreaking bestseller No one Cares about Crazy People (The Chaos and Heartbreak of Mental Health in America). A must-read if you have a child struggling with mental health or severe illness.

We share being ‘out there’ with our own stories because our hearts have led us down the path – and once the heart speaks, you better follow. No other road seems possible after that.

But it is vulnerable!

Some days, it just feels powerful and right. Other days, I want to pull back in my mousehole and act like I was never ‘out there’. Today was such a day.

Then he wrote me, and he changed my day with his words: ‘Lotte, I just saw your post on the mother’s workshop. What a breathtaking idea and presentation. I have so much respect for you. I want to build a blog around this. I am requesting your permission to do so. Godspeed this workshop and your rare leadership in mental healthcare.

Thank you Ron for reminding me of my leadership. Sometimes the responsibility can feel heavy. But today you made it feel light again.

And thank you for meeting me in my vulnerability today. And for sharing your’s with me.

I am ready to go all in again.

Lotte Weaver

“BECAUSE THE TRUTH IS RAW AND UNAPOLOGETIC”

Mark Rippee after his motorcycle accident

If you follow this blog, you know that I’ve written many times about the tragedy of Mark Rippee of Vacaville, CA. Here is a powerful essay by one of his two indefatigable sisters, written in May 2020 and reposted by her today, that says it all, and better than I have: https://www.catsvisions.org/post/no-apologies-by-catherine-j-rippee-hanson

DID SOMEONE MENTION “SOLITARY”?

Yes: I did.

I cited this barbaric penalty in my previous blog post, which was a plea for Ashley Biden to join her father’s Administration and co-ordinate federal policy regarding mental healthcare reform. Solitary confinement in our jails is one of the scourges that most needs reforming–obliterating, actually–if we are to call ourselves civilized. Solitary works horrors on the human brain. It drives mentally ill prisoners deeper into madness, and can afflict the sanity of those who have not shown symptoms of brain disease. And it does no good whatsoever–corrective, societal, or moral. That is the widespread theory. Here is the latest glimpse of the widespread practice.

Original bed inside solitary confinement cell in old Franklin County Jail, Pennsylvania. Credit: Andrea Linefsky, CC BY-SA 4.0, via Wikimedia Commons