Month: October 2012

Insanity in the UK

I’m a big fan of the English band, Muse. I’m a fan of their most popular album to date, “The Resistance,” released in 2009. I’m a fan of the first single of that album, “Uprising.”


I sing along with the lyrics…


“Paranoia is in bloom,

“The PR transmissions will resume

“They’ll try to push drugs to keep us all dumbed down

“And hope that we’ll never see the truth around.”


I like the song, even though that third line rattles around in my head.


“They’ll try to push drugs to keep us all dumbed down”


It’s hard to know what songwriter and Muse frontman Matt Bellamy means by that line. Is he literally referring to drugs or are “drugs” a collective metaphor for anything that distracts us from “the truth?”


If he is being literal, exactly what kind of “drugs” is he referring to?


I am not NAMI or “BringChange2Mind.” I don’t nitpick semantic uses of terms for mental illness in popular media. People and children with mental illness have bigger problems than words, like a lack of services and care. You know, serious things that might kill them if they don’t have them.


I don’t care about Matt Bellamy’s choice of lyrics. What I do care about is British attitudes toward the use of medications in treating mental illness.


A lot of my thinking about this has been sparked by responses I am getting from across the Pond to the airing of “Born Schizophrenic: Jani’s Next Chapter” in the UK. Like everywhere else in the world that Jani’s story reaches, I get a spectrum of responses.


I will give credit to the Brits for not suggesting an exorcism. That gives them one up on Americans-they’ve at least moved beyond superstition.


I will also give them credit for being FAR more polite about their distaste for our keeping Jani on medication than the American anti-psychiatric movement. How very decent of them. They make me a least feel like they would offer me a cup of tea and invite me to sit in the garden before proceeding to tell me how stupid I am.


(Note to British readers: There is no point to telling an American how stupid he is. It is an exercise in futility. I would have thought you would have learned that about us by now. If we didn’t listen to you 237 years ago we’re not about to start now).


The anti-psychiatry movement is everywhere, largely funded, no matter what they may say, by Scientology (because who else is going to give these fringe organizations money?) but nowhere in the English speaking world is there more “resistance” (sorry, Matt) to prescribing anti-psychotics to children than in the UK.  There is resistance amongst Australian doctors, New Zealand doctors, and Canadian doctors but nothing to level of resistance that exists in the United Kingdom.


But a country with a population of over 60 million is not going to be without children with mental illness.


First, let me say that your care of adults with mental illness is far superior to us. It’s your children with mental illness that you neglect. I know this because I talk to members of our adult MI support group from the UK who have no problems getting medication. I also know parents who are watching their children decline and can’t get a doctor to prescribe anti-psychotics.


It’s that British doctors are completely in denial. They will diagnose. A mother from the UK reached out to me recently. Her daughter has a diagnosis of conduct disorder and ADHD.


But no meds.


So (and this is not the first child from the UK that I have heard this happen to), doctors across the Pond will diagnose but not treat.




Over here, it is the other way around. Psychiatrists won’t diagnose but they will still treat. A psychiatrist will tell you, “I am not sure what we are looking at yet” but still write you a prescription for risperadal. And when that doesn’t work, they’ll write you a prescription for Clonidine. And when that doesn’t work, they will write you a prescription for Seroquel or Abilify. And on and on and on.


In America, providing you have insurance, your child will go through so many medications you will lose count and years of continuing or worsening symptoms without ever getting a diagnosis. It is hard to know if Jani would have gotten her formal diagnosis had we not, after more than a year, backed the UCLA doctor into a corner so she admitted what all the attending psychiatrists who participated in “rounds” (the daily observation and discussion of each patient) were already thinking but didn’t want to admit to. There was no other possibility left for them and for Jani. But I still don’t know if they would have actually given her that formal diagnosis had we not pushed for a NAME to this THING that was taken our daughter (her diagnosis actually didn’t become formal until her discharge from UCLA after four months inpatient).


But in America it doesn’t really matter. We wanted the label out of a desire to name the “Beast,” as if naming it would take its power (like The Exorcist). But the label didn’t change the treatment.


Sorry to break it to those of you who think Jani is on the medications she is because we “pushed” for the diagnosis of schizophrenia. It’s the other way around. She was already on the medications. In America, the diagnosis develops out of what medications work (to some extent-there must still be observation of psychotic symptoms). But the point is that doctors in America treat the symptoms and worry about the diagnosis later. If anything, the diagnosis is really just a means to be able to bill insurance or Medicaid.


In America, it is the treatment that matters. Does it work?


This is not a question they seem to be asking in the UK.


By the way, it’s not that American psychiatrists believe medication is a cure-all. Nobody is that stupid. But medication is the cornerstone, the base, of all other treatments (and yes, this includes autism in America as well). This because if you can’t stabilize the individual’s psychotic symptoms, anything else you do will be pointless, including “therapy,” whatever that means. And what do you mean? “Therapy” can be a lot of things: play therapy, recreational therapy, occupational therapy, music therapy, art therapy, equine therapy, animal therapy (all except the horses are included as part of UCLA’s inpatient program-yes, dogs come to visit the kids on the unit twice a week).


Unfortunately, none of those therapies is a cure all either. Why? Because you need to stop fucking trying to kill yourself or beat your head against a wall or chew on a chair or destroy your environment before you can even do any of those things.


American psychologists have come to understand that therapy without stabilization is pointless. You won’t get anywhere. Therapy is part of the maintenance of mental illness, not the initial treatment. Therapy is about learning to live with these diseases of the mind. Medication is what treats them.


They aren’t perfect. In fact, they are scary as hell and they must be watched at all times. But they remain the most effective means of TREATING mental illness over the long term and they remain our best hope for getting some out of a psychotic episode and back into their life in a relatively short amount of time (hopefully).


Yes, this is what we parents tell ourselves every time our children develop a side effect. This is what I tell myself every time I have to take Jani for a blood draw to check her chem levels. This is what I tell myself every fucking time either of my children go to sleep.


Every so often, we “forget” to give them a pill. Is it conscious? Maybe. Contrary to the opinion of the ant-drug crowd, we are always hoping to reduce the levels. So we “forget” a dose and see what happens.


The first day ends really well and you start to wonder. Maybe. Maybe they don’t need this high a dose. Maybe things are getting better.


Then the second day, everything starts to fall apart. Not rapidly. It’s more like watching paint curl in the heat of a fire and peel off. You see the disease creeping back. You see your child fighting back against it. And you see them beginning to lose.


So you, painfully, return them to the prescribed dose. You ride through the next day or day as the psychosis gains ground, because it takes a few days for the drug to return to therapeutic levels.


And no matter how lively and spirited your severely mentally ill child is on doses of neuroleptics that would put a neurotypical person into a coma, it doesn’t take away the fear. I still check on Jani in the middle of the night, just to make sure she’s breathing, even though logically I know there has never actually been a confirmed case of a child dying from anti-psychotics.


Yes, despite what the anti-psychiatry people will tell you, there are no reported cases of a child dying from these drugs (pre-1975), save Rebecca Riley. Rebecca Riley is all they have. And the only ones who really know what happened to Rebecca are her parents (both convicted of murder), the District Attorney, the Judge, and the jury in their respective murder trials. This is from the Wikipedia page on Rebecca Riley: “The medical examiner’s office determined the girl died from ‘intoxication due to the combined effects’ of the drugs Clonidine, valproic acid (Depakote), Dextromethorphan [cough suppressant], and Chlorpheniramine [anti-histamine] and that her heart and lungs were damaged due to prolonged abuse of these prescription drugs” [Brackets mine].


Rebecca remains the sole casualty of neuroleptic drugs (assuming that is what killed her-I am only going off what the medical examiner determined). The mother was convicted of second degree murder and the father was convicted of first degree murder. First degree murder in all 50 US states requires proof of intent to kill. Not neglect. Not “willful disregard.” That’s manslaughter. Murder requires intent to deprive of life.


The DA would not have sought this conviction and the judge would not have let it stand had there not been sufficient evidence. So it would appear Rebecca’s death was not “accidental.”


There are no other proven fatalities from neuroleptic drugs in the United States. Even the black box warnings of risk of suicide in teenagers on SSRI class anti-depressants are based on speculation, but there is sufficient concern that American doctors generally avoid SSRIs with children.


Which brings me back to Merry Old England.


At our last appointment, I asked Jani’s psychiatrist where she thought the British resistance to medications comes from. She attributed it to the UK’s single payer health care system. “To keep costs down, they limit the number of drugs available.” She exhaled. “Over there, they prescribe Prozac for everything, even psychosis.”


Prozac? Prozac actually does have a “black box” warning for those under 25. Interestingly enough though, that is only in the US. FDA studies and MHRA in the UK came up with conflicting data, or rather conflicting conclusions about suicidal “ideation” in children on flouxetine (prozac). In the US, the psychiatrists equate suicidal ideation with increased risk of suicide. The MHRA, on the other hand, does not consider ideation to be an automatic increased risk factor for suicide.


But I am not sure I buy her explanation. It seemed to “American” of an answer. Besides clozapine is used in the UK (with less restrictions than in the US) and thorazine.


No the “resistance” is something greater than the UK’s single payer healthcare system. British psychiatrists simply do not want to put kids on neuroleptics.




So I started searching for the answer in British culture.


British attitudes toward mental health can, I think, be best summed up by Pink Floyd, the boys from Cambridge.


One of the most well known Pink Floyd songs is called “Brain Damage,” from the “Dark Side of the Moon” album. Indeed, the band originally referred to this song as “The Lunatic,” referred to through-out the song…”the lunatic is in my head.”


Roger Waters has said that the lyrics for this song drew heavily upon the decline of Pink Floyd founder and (by that time) former member, Syd Barrett (the lyrics, “And if the band you’re in starts playing different tunes…” is a direct reference to Syd’s last days with the band when he would often play a completely different song from the rest of the band).


Yet two years later, during the recording of “Shine on You Crazy Diamond,” a song actually about Barrett, when the real Barrett suddenly showed up in the studio and offered to play guitar, the rest of the band had no idea what to do. They had no idea how to deal with his strange behavior and speech. Roger Waters was almost in tears and later, on his way to David Gilmour’s wedding reception, passed Barrett walking along the road and ducked down to avoid being seen.


Pink Floyd embraced “madness” in their songs, but couldn’t deal with the real thing in their face.


And I think that pretty much sums up the English attitude to mental illness. So much of your culture actually celebrates insanity (hell, even your King George III went insane). You pretty much “invented” mental illness (Bethlem Royal Hospital, better known to the world as “Bedlam,” was the first true mental hospital ever, dating back to the 13th Century).


I am not trying to be critical. We Americans are just as capable of denial.


I remember the murder of James Bulger in 1993 near Liverpool. A two year old boy tortured and beaten to death by two ten year old boys, Robert Thompson and Jon Venebles. It was a horrific crime to an innocent child. I remember the horror and anger that humans, children, could be capable of such barbarism.


Then again, Lord of the Flies was written by an Englishman, wasn’t it?


That book implied that with the loss of adult supervision, children become monstrous killers. Except, of course, Ralph and Piggie. Humanity is lost with Piggie’s death.


I think there is still a part of your culture that clings to the belief that you can keep “madness” at bay with strict rules and discipline.


Pink Floyd can tell you otherwise. It’s not your cruel headmasters. It’s not your history of conformist culture (which is really no more conformist than ours). Really, America and the UK aren’t that different.


James Bulger would be 22 now if he were still alive. I realize Thompson and Venebles are not great examples because they lack empathy. There is a pathology at work there, but not severe mental illness.


I think of the “infamous “Liverpool 38,” 38 people who saw Thompson and Venebles pushing along a crying Bulger and didn’t intervene, which is not entirely true. Many did, but Thompson and Venebles convinced them that Bulger was their little brother.


Did any of them actually ask Bulger if this were true? I don’t know. Maybe he wasn’t verbal enough.


My point, Great Britian, is listen to your children. Parents, listen to your children. Even the English mother who wrote to me seeking help for her daughter doesn’t realize that the “bad behavior” that she sees in other children and blames on other parents is possibly mental illness.


And to the English doctors, I say this: medications won’t kill the children you suspect are mentally ill…


…but that stiff upper lip just might.


Oh, and one more thing.


I was born in Australia to Australian parents. I am white. My last name is Schofield.


Where do you think my genetics come from?


The highest concentration in the world of people with the last name of “Schofield” or “Scofield” (both derived from the Old English word “scow,” or hut that shepherds used to live in) is Lincolnshire (Yorkshire is second).


The genetic line that led to Jani is still alive and kicking in the UK. There are “Januarys” all around you.


Medication is not the cure-all. But they contributed significantly to giving Jani a very good shot at life and happiness.


You’re good people. You sent your children out of London to the country during the Blitz. You know how to take care of your children.


Well, this is another Blitz. And this is not one you can get your children away from. Because it is inside their heads.


In many ways, the English are the strongest people in the world. You fought off the Nazis while we Americans were still twiddling our thumbs. Now the situation is reversed. You cannot afford to twiddle your thumbs. Severe mental illness does not respect an arbitrary age, even if you do.


Think about the Beatles, think about the Rolling Stones, think about Eric Clapton. What did they do? They took American blues music and sold it back to us.


Everything we do, you’ve done better.


So treat your mentally ill children better than we do. Take what we have started and make it better.


Make it better.







Never See the End of the Road

Jani’s psychologist sees her at school now so I rarely get to see her (the psychologist).  But she happened to be there in the school office waiting with Jani when I arrived the other day to pick her up. I wanted to catch up, see how she felt Jani was doing, so the assistant principal took Jani into her office while I spoke to her psychologist.  I asked her what she and Jani were working on.


“We’re working on games, specifically on how to…” she glanced over at Jani, about twenty feet away, and mouthed “lose.”


I nodded. This is why Jani won’t play any games, and games on the playground are critical to socialization. “Well, I am open to any ideas you have. I’ve never been able to convince Jani of the old adage that it’s not whether you win or lose but how you play the game.”


“Well, to be honest, it’s something even regular kids have a hard time with,” she answered.


This got me thinking. When do when learn how to lose?


I congratulated her on the San Francisco Giants getting into the playoffs, which inadvertently continued the theme of losing. I thought about my own brief experience in Little League. I rode the pine for most of the season. When I did get to play, I was stashed in right field (because most hitters are right handed and tend to pull the ball to left field, the so called “hot corner” in baseball). When a ball was hit my way, I seemed to have this fear of being hit which would delay me coming in on the ball. Funny how at 10 years old nothing seems worse than being hit on the head by a falling fly ball. I still remember the only two at bats I got that season. My first at bat, I got hit in the head by the pitch, which, just like in the professional game, means an automatic walk to first base. My second at bat came two months later during the tournament. I faced the same pitcher. I never learned to time my swings or try to guess if the pitch was a ball or a strike. I just swung. And somehow I made contact and hit what is called a “comebacker,” which is a ball hit right at the pitcher. He followed his natural instinct, which was to jump. The ball shot underneath him and passed by the shortstop into the outfield.


A stand up double and an RBI. My only hit in my illustrious baseball career.


Personally, I never cared whether the team won or lost. All I cared about was getting through the game. I didn’t want to field. I didn’t want to hit. I didn’t want to play.


I have the vague memory that my Dad put me into Little League for that one season primarily to “socialize.”


I kept trying to remember when I had learned to lose. It wasn’t as a kid because I never cared about winning. I can count on one hand the number of fights I had growing up and I lost every one of them. I had a problem with punching another kid in the face. It seemed too harsh. So I went for the stomach while my opponents had no problem clocking me in the head.


Try as I might, I could not remember learning to lose when I was a kid. It’s hard to learn to lose when you don’t care.


It didn’t hit me until Jani and I were on the drive home.


I didn’t learn to lose until I was an adult.


Hope is like everything else. It’s probably inborn but also influenced by your environment. My childhood was not perfect but I never wanted for anything materially. My father earned a good living. I never had any doubt that I could achieve whatever I wanted. For me, it was more a matter of the desire to do so.


When I ran away from home for three months at 16, I accepted that I had to go to inpatient treatment in order to come home. I embraced that program because I had the desire, not because I really wanted to come home (because I didn’t feel it was my home) but because I knew it was the only way to get back on the road to anywhere other than death. I gave up drugs and drinking because I had the desire to get out and the only way out of Minneapolis, out of my home, was to be a functional human being and finish high school and go to college (all of which my father paid for).


When I decided at the end of my second semester at the University of Arizona to up and move to Los Angeles to be a screenwriter, I had the desire. I truly believed I could “make it.” Looking back at my arrogance in those early years in LA, it’s a good thing time travel is not possible because I would go back and hit myself in the side of the head. I had this unshakeable faith, if you want to call it that, that I would make it. I got good jobs but left them because I was convinced they would stop me from achieving my goal. I kept dropping out of college because I was convinced I wouldn’t need it. I let Susan support us and she did, apparently based entirely on my faith. And when my faith would falter, hers stepped up. In many ways, it still works that way today. It’s funny to read criticism of my treatment/portrayal of Susan in January First. Funny because first they don’t seem to realize the book is written in present tense, meaning it is a reflection of how I felt THEN. Funny because I read comments like “He criticizes his wife for a decision and then does the very same thing a few pages later, yet never acknowledges that [Susan] was right.” Which is true. I blamed Susan because it was easier than facing the reality that I was dealing with a problem I could not fix.


You see, I was losing. And I’d never lost before. I’d either won by default, by accident, like the time I hit that double in Little League, or simply continued to live in denial, thereby allowing me to keep from conceding defeat. If you think I am an asshole from reading the book, you would have DESPISED me in the early drafts. My assholeness was toned down at the request of my publisher.


Hell, I tried to kill myself because I couldn’t concede defeat. I’d never learned to lose.


It’s still hard. I haven’t won Jani back. I’m just in another form of denial that says that she will make it through the very hard challenges that remain. Either that or I have more faith in her than I do in myself.


I’ve never explained on this blog why I am now a life-long fan of the Angels.


The Los Angeles Angels of Anaheim, formally the Anaheim Angels, which is what they were known as in 2002. The fall of 2002 was the first time I had ever watched the MLB playoffs. This was back when Jani wouldn’t sleep unless she was held and we had no cable back then so I found myself sitting up night after night. And with nothing else to watch, I watched the playoffs. I watched the Angels mow down the Yankees with Jani in my arms. I watched the see-saw of the ALCS with the Minnesota Twins, torn in my allegiance because I had partially grown up in Minneapolis. But there was something about the Angels. Maybe it was the fact that they entered as the AL “wildcard,” meaning they were the underdogs. Maybe it was the fact that they had never been to the “Big Show,” let alone won it. Maybe it was that no one expected them to make it and yet every single time it looked like they were out, they fought back. Maybe it was because my brother in law bragged about getting access to  a sky box at Pacific Bell Park (now AT&T Park) which created in me a dislike of the Giants that I would not have already felt.


On October 26th, Game 6 of the World Series, the Giants were leading 5-0 heading into the bottom of the 7th inning. I was sitting in the easy chair, holding the sleeping Jani in my arms (or “Janni” as she was then known), waiting for the inevitable end.


After Giants starting pitcher Russ Ortiz gave up consecutive singles to Troy Glaus and Brad Fullmer of the Angels, San Francisco manager Dusty Baker pulled Ortiz for Felix Rodriguez, one of the best bullpen arms in the game. Next up to bat for the Angels was Scott Spezio. Jani started getting fussy and I was not paying attention as Spezio fouled off pitch after pitch. Jani suddenly cries out in her sleep and jams her arm out. I am more concerned with getting her settled down so it takes me a minute to realize the TV just got louder. At the same moment Jani cried out, Spezio hit a three run home run to put the Angels back in it. That was the turning point. They would come back to win Game 6 and take Game 7 for their first World Series.


Since then, I’ve always considered Jani, and not the Rally Monkey, to be the Angels true good luck charm. They should put her up on the Jumbotron down at the “Big A.”


Believing in destiny is a form of blind faith. It was what keeps you going through losing seasons. Jani is in a winning season. Bodhi? Up and down. The Angels? Well, they got eliminated in game 160 of the season when Oakland won their 92 game.


I can handle losing a game. I can even handle a losing season. That’s essentially what I tell my friends and support group members with special needs kids going through a tough spot. I don’t use those words exactly but I am essentially telling them that things will turn around. I am playing manager to a ballclub. I have to believe that every day we got a chance to win, even if it takes us all another ten or twenty years to go to the proverbial World Series.


Except losing in sports has no real consequences. The worst that can happen is you get fired. Then you get hired on by another team.


It’s not like that with special needs kids. I am starting to realize there isn’t always another team. I am starting to realize there won’t always be another season.


I’ve seen families, including my own, lose battles. But what I am beginning to see, because I have known some of these families for several years now, is the loss of the war itself.


And it kills me. When our story first became public, I would hear from families who had lost their son, daughter, brother, sister to mental illness. More specifically, to suicide, the most common form of death for the mentally ill. I would write back and promise them that their son, daughter, brother, or sister did not die in vain, that I would change things.




Maybe. Maybe the reason I rail against NAMI and other mental illness non-profits is because I want to believe it is THEIR failure that these kids are dead. They didn’t do enough. They didn’t bleed dry to save them all.


Maybe it’s denial. There should be no casualties of mental illness because we have the resources to stop it. We have the money. It’s just not going to the right people. With enough people and enough money we could have an around the clock support system. Pretty hard to kill yourself if we never leave you alone.


And if I could do that, I would. If I could surround you, whether you are an adult or an child, with friends who never left your side, flesh and blood friends whose job it was to stand guard against the ones in your head who tell you to hurt yourself, I would.


If I could get every parent of a mentally ill kid to totally focus on their child, if I could drag people out of their house and force them to stand guard, I would.


But we come back to desire, don’t we? You will only do what you want to do.


I’ve watched mentally kids grow into mentally ill teenagers. Some of them are very nearly adults now. And it hasn’t gotten any better. There have been moments, yes, but the disease inside their brain still has the advantage.


And what terrifies me is I see death now. I see it everywhere, hiding in the shadows, reaching out its long fingers for these kids, kids who are getting closer to adulthood and the loss of their last true defenders, their parents.


I see some parents beaten down. Not giving up on their child or children, but realizing that the end of the war is coming soon and they are not likely to win before their child or children rolls over the age of 18.


And I get furious with them. I want to scream at them that it is not too late, that it is never too late.


But I don’t know. These are parents who have fought the war longer than me and parents who have fought a more difficult war than me. There is the other end of the spectrum of people who read January First and comment “That was so awful.”


Not by a long shot. There are FAR worse cases in the world, in your country, in your state, in your neighborhood, than Jani. Jani’s hallucinations are primarily benign. I have seen kids scream in terror. Jani is not suicidal. Jani is not really violent anymore. There is worse, much worse. Jani has schizophrenia and it is a challenge and I am proud of her for everything she has achieved. But she doesn’t have the worse case of schizophrenia I’ve ever seen. Not by a long shot.


I still tend to blame other parents for not doing what Susan and I have done (even if what we’ve done is impossible) because I refuse to accept defeat. I can’t lose. I never learned how. So it must be your fault.


But I can’t know that. I can’t know that anything you did or anything that I did really made a difference. I only want to believe that because I can’t just walk out of the dugout and into the tunnel because for some of your children, there will be no next season.


So I overturn the baseball bats. I scream at umpires. And, yes, I do get ejected (notice I don’t get invited to mental health events despite having arguably the most “famous” mentally ill child in America).


I’m “nice” when I have hope, when I have faith. When I start to lose that, I become the world’s biggest jerk. Anything to delay the end of the game, even if it gets me ejected.


So what is the point of all this?


I am scared of losing. I am terrified of it. I am terrified of the phone calls I am still to get, the phone calls telling me “_______________ is dead.”


I want to win the game. I want to win the Big Show. I know, I believe, we can do it. Collectively, if enough of us care, we can change this world, adapt it for these kids. We will make it.


But we won’t make it with all of our kids.


As much as I want to deny that, that is the fact. Dr. Martin Luther King spoke about the “Promised Land” and he acknowledged that “I may not get there with you.” He was right. He didn’t get there with us.  But he started us on that journey. We haven’t made it there yet ourselves. We are closer, but we haven’t made it.


So this is what I want you to do, whether you are a parent or a family member of a mentally ill child or someone who knows or works with mentally ill kids. The next time you see them, I want you to say something to yourself.


I want you to say, “That’s Dr. King.”


I pray for the time to help get your child to the promised land. But I may run out of time. We all may run out of time.


But whether your child makes it there or not, remember this….


They started the journey.