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