Her first book reached out to mothers of afflicted and lost children, making common cause with their plight and her own. (And why is it, I ask again, that mothers seem always to be the point-parents in dialogues about m.i.? Where are the fathers?!) This second work is even more ambitious. It’s a compendium of stories that Ms. Ranahan has exhaustively retrieved from mothers in similar straits. It brings to mind the protean books of Studs Terkel more than a generation ago. Ms. Ranahan writes that she chose this interview-and-transcribe approach in lieu of “an extended rant,” and she has been forthright about the psychic weariness this journey has cost her. If you are lucky enough not to have lived in this horrific “sub-nation,” with its attendant catastrophes of diagnosis, effective treatment, ruinous healthcare costs, courtroom and criminal justice, effective political leadership, and awareness in the culture at large, please read Ms. Ranahan. And then get busy. You could help change the world. And DeDe Ranahan is now enshrined in the literature of enlightenment.
In the tradition of the late D.J. Jaffe, but with a psychiatrist’s grounding in nosology and a journalist’s zeal for social and civic truths, Insel explores the strange disconnect between stunning advances in the understanding of why and how the human brain can run amok, and the infuriating stagnation of actual reclamation for the mentally ill. He writes with laser-like clarity and the assurance of a master in his field.
I can’t recommend this book with any more persuasion than that of the great advocate Pete Earley, who writes on the back cover:
“’Healing’ is truly one of the best books ever written about mental illness, and I think I’ve read them all. Dr. Insel speaks as a parent, scientist, doctor . . . defining what’s wrong and offering clear-headed solutions—all the while guiding us forward with compassion, goodness, and hope in this juggernaut wake-up call.”
I am wearily–yes, wearily–posting links to two recent pieces by the peerless mental-healthcare blogger Pete Earley. Below them I’m linking to an archive within the blog you are reading now.
Their common denominator: they are about young brain-damaged men enduring Hell-on-earth lives on the streets of America as those who love them–mothers, sisters–trudge on through the years, and decades, trying vainly to awaken the conscience of the–the what? The whom? The withered, laughably misnamed “mental health” systems in their states that are restricted by outdated boneheaded rules and by the soul-deadened payrollers who run them. By the distracted politicians who appoint those payrollers and promptly forget them. By the oblivious electorate that will never form a constituency to keep the politicians on the case.
Here is a glimpse inside the soul of an activist. Leslie Carpenter of Iowa City, Iowa, is among the very best we have. She has connected, and deeply, with people at all levels of public service to implant her passionate agenda of mental healthcare reform.
She also immerses herself in the lives, the despair, the desperate pleas for reclamation, from ordinary people who see their loved ones in agony. She embraces their anguished stories and does what she can to aid and comfort them. Often, her efforts fall short, as most of such efforts must. And when fatigue and frustration overtake her, she confesses it, eloquently, as in this Facebook post. Read it, please, and absorb a hero’s account of how god damned hard it is for all of us.
Sometimes in the life of being a very public serious brain illness advocate, I have people reach out to me for suggestions for loved ones, resources, etc. I try to respond to all of them and at least make an effort to reach them, give them all of my contact information, and let them get back into contact with me. Not all do, but when they do, I try to listen with a caring heart and share information that might be helpful.
Recently, I was asked to meet with someone who has worked within the system who wanted to share information with me of several cases and system failures they felt I needed to know since I work at the local, state and federal level to improve mental health care.I just left that 2.5 hour meeting feeling filled up with the poison of knowledge of so many cases with adverse outcomes, due to not just gaps in the system, but active choices of key people in the system.I have known there were problems, gaps, and challenges. I now know some of the people who specifically have caused harm, and my soul is feeling overwhelmed with sadness and disappointment.I need to move forward with solving some of this mess, and I will. But for now, I am sitting in a random parking lot crying and processing and figuring out the best next steps.For now, let me say this:We need more people to go public with this humanitarian crisis of not treating people with serious brain illnesses and not paying for them to be housed in the best level of care where they can be the healthiest and most stable.We need to care. We need to act, no matter how terrifying it might be to bring this information forward.#WeCanDoSoMuchBetterThanThis
I am typing these words in a near-incoherent state. I am consumed with boiling anger that makes me want to scream; black despair; bottomless pity for Rebecca Distel Reinig, the mother of Joseph; for Joseph’s father, and for Joseph, rest his soul. I feel such contempt for the pigsty that is our mental healthcare system and for the hospital and the healthcare factotums who carried out this coldblooded deceitful near-execution. (A sack lunch they gave him before dumping him in the rain. A SACK LUNCH).
I feel trepidation on behalf of certain friends who will read this and feel stricken because they have also felt the sting of American barbarism—institutional and private—as regards mental illness. The Rippee family. The West family. Find them in my blog archives if you don’t know who I am talking about.
Yet I derive hope from the handful of heroes in this country who do not let their own exhaustion and despair halt their crusade: the author and advocate Dede Moon Ranahan, who originally posted Rebecca Reinig’s nightmarish account of her son’s fate. Others.
I know that many, if not most of you, being human, come upon my mental-illness blog posts and read past them. Not this one. Please. Don’t skip this one. Read it, Every word. And learn something about the hellscape that awaits just on the other side of the membrane.
From Rebecca Distel Reinig:
“It’s with a heavy heart and a sadness that I did not know existed in a human soul that I would like to share with you the passing of my son Joseph. He was found Wednesday in some bushes in Oceanside, CA. Alone in the rain. Still wearing the hospital gown that he was had on when he was dropped off by staff from the behavior health hospital on Monday afternoon. His death is a tragedy and could have heen prevented if the doctors and social worker had truly listened to me when I begged them to not release him to the streets. I told them he was gonna die. Keep reading…I will explain the trajedy of his death. His cause of death is under investigation by the San Diego Coronor. An autopsy will be performed within the next few days.He just turned 30.
For those of you who do not know my son’s story, it’s not that much different than thousands of families out there. Joseph lived in transient camps in San Diego County with severe mental illness. We wanted him to live with us. In fact we took early retirements to move him and us away from San Diego 350 miles north to a small town in the foot of the Eastern Sierra mountain range, where I was raised, and where as kids our we would take our children. We thought taking him to the mountains where he loved hiking and fishing, that giving him a stress free life in the mountains and loving him up would “cure” him. His delusions had him convinced that living up here with us was endangering our lives. He was convinced that if he did not leave ” they” would bomb our house, kill us and put him in a cold dark room ( not unlike the padded cell in jail where he would spend days at a time in, naked in a straight jacket).
He lasted living with us for only several months, and thinking he was saving our lives, he went back to the streets of San Diego CA. That was 3 years ago. Since that time his life had been a revolving door of mental hospitals, medical hospitals and jail. He has been hospitalized in behavior health hospitals 9 times this last year. Sometimes against his will, often times he would admit himself. Often times I would drive the 5 hour trip to pick him up, get a motel and would try to convince him to come home. He always refused. Stating our house would be bombed if he did.I’m also angry…that’s not even a strong enough word. Joe admitted himself last week to Aurora Behavior Health Hospital. That was his go to place. He liked the staff and doctors and they seemed to care about him. It was there 2 months ago that the psychiatrist determined he was unable to care for himself and referred him to the County conservitor office so his dad and I could gain control of his medical needs and help him obtain the long term help he needed. The conservitor investigator denied the claim because he did not meet the criteria of gravely disabled. In California the bar is set very high to meet the criteria of gravely disabled. I have yet to know of anyone being successful with that endeavor in california. Accept Britney Spears. Her conservitorship is a slap in the face to those of us whose loved ones truly need help.
Anyway..Last week Joey admitted himself because he was feeling suicidal and was psychotic. He would always call to tell me keep was trying to get help. He wanted help so badly. Last Friday the social worker called and assured me that he would not he released to the streets, she was trying to get him reestabluxhed with a care management team and get him long term housing. I stressed that he could not be released to the streets. She assured me he would not. Monday morning she called and said he was heing released and Gould I pick him up? I asked what happened to the management team and housing. She explained no one would accept him because over the weekend he had been violent with staff. I instantly asked her why would she ask me to pick him up if he had been violent? I begged her to have him out on s 5150 hold to buy me some time to figure it what to do. She was heading to a meeting about him and would talk to the doctors. I was clear when I stated to her that under no circumstances should he be released to the streets. I said he is gonna die of we cannot get him the help he deserves . She assured me they would not and would get back to me. She did not. I called the hospital to talk with Joey monday night, he was not there. Still no call from the social worker. Tuesday morning I called her. she explained that her ” team” had given him a ride to Ocesnside and dropped him off at a CVS pharmacy with his prescriptions and a sack lunch. I was in shock, hung up and waited for his call. He always called. His body was reported to the sheriff’s office Tuesday night but because of bad weather they could not locate him with drones. The homeless lady who reported him took them to his body Wed. morning. He was still wearing his hospital gown and still had a baggy of white powder clutched in his hand. He was steps from the homeless camp. the coronor explained that it appeared he got some bad dope laced with fentanyl. Although suicide and foul play have not been ruled out. What kind of crazy fuck places meth with fentanyl? Its deadly and kills almost instantly.I’m so angry and devastated I want the system to pay for failing him. I want accountability. I m so angry its consumed me. I dont want to he consumed. Yesterday in.my grief i called a wrongful death attorney and babbled like an idiot. I told them i needed an attorney with balls enough to take on the “system” and make the “system” accountable for my son’s death and the needless deaths of all the other josephs out there. I want justice, awareness , accountability and the laws changed that binds the hands of families trying toget help to save their loved ones lives . iI dont want his death to have been in vain. The attorney politely said they will get back to me. I doubt it.Meanwhile we sit here trying to figure out where we will come up with the money to bring our son home and have s memorial for him. Death is such a money making business and for a fee if $250 we can buy 30 minutes if time to see our sons dead body and tell him goodbye . …that is if he is in viewable condition. if not, for an additional 800 they will make him viewable.”
“Rikers houses more than 4,800 detainees on a given day, a majority of whom are awaiting trial and have not been convicted of a crime. Most do not commit violent acts, and a significant number struggle with mental illness.”
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.
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!!
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!
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.
The ravages of mental illness continue to flood every corner of society. Coverage of this atrocity has improved in quantity and sophistication in the last quarter-century–but to what end? Policy-makers, law enforcement and public opinion remain largely indifferent to meaningful education and reform. Mis-diagnoses, non-diagnoses, incarceration, hospital indifference, and violent deaths of people in psychosis surge on, gathering speed. And no one is at the wheel.
This strongly observed and written story by Hannah Dreier of TheWashington Post throws light into an especially neglected precinct: Poor black families, and the mentally afflicted children within those families. It provides a glimpse of the day-to-day crises of a divorced Black mother, Kelli, and her two sons–one of whom, the 11-year-old Ahav, is diagnosed with schizophrenia.
You may read Dreier’s piece as simply a searing journey into the wilderness of one family’s mental-illness misery, and of the heroic efforts of Kelli to keep Ahav safe. A closer reading reveals a miasma of bureaucratic obstacles, therapeutic failure, option-choking poverty, and the constant dread of trigger-happy law enforcement that imprison tens of thousands of families such as Kelli’s in the rusted chains of our failed mental healthcare system.