Month: December 2011

Not Yet (These Nights Go On and On and On)

Several blogs back (I don’t know which one and I’m not going to go back looking for it) somebody made a comment about my use of music videos in my blogs. I do read every comment that comes in but I rarely remember them. Yet this one stands out to me, months later. I don’t remember it word for word, but it was a snide remark, the commenter stating something to the effect using music to express emotions is something only high school kids do.

 

I suppose the primary reason it stuck in my mind was because I found it funny. I didn’t reply because I’d never really thought about why I do it until then and I didn’t have an answer. Obviously, it is conscious decision on my part, in the sense that I try to match the song to the content of my blog, but I’d never really asked myself why I do it. I have no way to track how many readers watch the videos but I would venture to guess the number is fairly small. It is, I would imagine, hard to sit and take the emotional sledgehammer that comes with reading about our life and then click on the video at the end. It is kind of having your head crushed and then asked if you’d like to go see a movie. No, thank you. I’m still trying to process what I just read. I’m not really in the mood for Coldplay.

 

Which is part of why I do it. The videos are the come down, a metaphorical version of the hypnotist counting back from ten to one and telling you when you hear the number one you will wake up, refreshed and rejuvenated.

 

But mainly, like high school kids used to do on MySpace, I do it for me. It’s my rejuvenation. I have to give myself a way out. This is not true of all my blogs, but some of them, during the writing process, the emotions start to come. As I write, I feel them build and I feel myself start to break. There are some blogs where to fully tell the tale I have to go back into a place I really don’t want to go. I have to feel what I don’t want to feel, feelings that if they took over would destroy my ability to function. By the time I come to those blogs, I am emotionally spent. I turn to the music videos to bring me back out.

 

Quite often in my blogs, I do what I am doing right now, which is avoiding my emotions. I stay shallow as a survival instinct. I am well aware that the most powerful blogs are the ones where I rip myself open but, quite frankly, that is just not something I can do on a regular basis.

 

Thanks to my mother, I was introduced to psychology at a very young age. Some parents are alcoholics. Some are drug addicts. Mine was an amateur shrink. Psychology, hers, my father’s, and mine, was her addiction. And addiction, by its nature, gradually tears away any aspect of your life that is not the addiction, until there is nothing left but the addiction and you are simply the vessel for it. People are generally drawn to psychology because they want answers: answers about why they are the way they are. Really, it’s very similar to religion. Humans turned to the supernatural to explain why the world around them was the way it was. Eventually, those supernatural beliefs formalized and ritualized into a religion.

 

The difference between religion and psychology is that religion, at least originally, sought to explain the causes of events around us. Psychology, at least originally, sought to explain the causes of events we create. Psychology is religion turned inward. It’s looking for the devil within instead of looking for the Devil without.

 

Yes, I am still avoiding my emotions. It is far easier to pontificate on humanity than actually feel emotions. Bear with me. I have to work up to it.

 

The problem is that if you go looking for the Devil, you’ll eventually find him.

 

It’s interesting how it is so much easier to find the things that are wrong with you than the things that are right.

 

Medicine was born out of looking for the devil. In fact, in its earliest incarnations, that is exactly what doctors were doing. Some of that still survives to this day. There are MDs in every corner of the world (although they aren’t always easy to get to) but in many parts of the world, locals would rather go to the witch doctor than an MD. Even here in the United States or elsewhere in the West, there are plenty of people who turn to various healers with a certificate from the Learning Annex that says they are qualified in Chinese herbs or Reiki energy. It is not my intention to disparage these people. I have friends who claim to be Reiki healers. But let’s face facts. They’re witch doctors. There’s nothing wrong with being a witch doctor. If you are one, you are part of an ancient tradition that goes back to the earliest human tribes.

 

And like I said, medicine was born from that same tradition. Medicine gave birth to psychiatry in the late 19th Century. Yes, psychiatrists prescribe more medications now than they did in the past, but the rise in prescription rates of psychiatric medications has been no more rapid than the rise in prescribed medications for other illnesses.

 

This is not some grand conspiracy. It is because the drugs didn’t exist.

 

What exactly do you think doctors did for you if you got strep throat or pneumonia in 1890 or even 1920?

 

Answer: They watched you either beat it on your own or they watch you die. Generally, it was the latter.

 

There wasn’t much else they could do for you. Their training was in how to diagnose. They knew the mechanism of how the infection was killing you but not how to cure it. Treatment was a combination of various elixirs and potions to treat symptoms combined with prayer. “We’ve done all we can. Now we just have to hope for the best,” was a common refrain from doctors to parents of sick children right through until the 1960s.

 

Two things happened that revolutionized the treatment of illness. The first was the discovery and mass production of antibiotics. It might surprise you to know that there were those who distrusted antibiotics and believed people shouldn’t take them decades before anyone made a stink about kids taking Ritalin or Abilify.

 

The second revolution was the development of vaccines, particularly against smallpox, polio, whooping cough, and yes, mumps, measles, and German Measles (now known as “Rubella”).

 

For those of you who don’t vaccinate your children, why exactly do you think people live longer today? Diet? Bullshit. Our diet is far worse today than it was for our ancestors. We have a high fat, high sugar diet. They had a high protein, low fat, low sugar diet. People are quitting smoking and drinking? Also bullshit. Sure, stopping these things reduce your likelihood of liver disease, kidney disease, heart disease, lung cancer, emphysema, etc, etc, but those were things that got most people at the end of their lives. A man in 1930 dropped dead from a massive heart attack at forty for the same reason a man drops dead of a massive heart attack at forty in 2011: there was a genetic abnormality.

 

The primary reason we live longer today is because we have been inoculated against the things that often killed or weakened us. For those who don’t vaccinate your children for MMR, it’s too bad you can’t too many mothers left alive who had to watch their children die from mumps, measles, or rubella.

 

By the way, this is one area Susan and I disagree on. Susan is not sure about the role of vaccines in autism because Bodhi was developing normally (or so she believes) until he got his MMR at two. I see this as the error of “cause and effect:” just because “B” came after “A” does not, in and of itself, mean that “A” caused “B.”

 

Which brings me back to psychology. The first generation of psychologists were medical doctors. The second generation were also MDs but studied psychiatry in a time when psychotropic medications were not yet available. It was this lack of pharmacology in early to mid 20th Century psychiatry that led to the division of psychiatry and psychology into distinct fields. I get this. In 1950, unless you felt comfortable giving lobotomies, psychiatry must have seemed fruitless in terms of reducing a patient’s suffering. In that world, I would have preferred psychology as well.

 

But something happened. While mid-century psychiatrists were focused on brain biology and what connections they could cut to improve social behavior, mid century psychologists, perhaps horrified by the apparent lack of concern for the rights of psychiatric patients, retreated from psychiatry and the focus on the brain. The end result was that by 1965, just as Thorazine was becoming available, psychologists had split “the mind” from the biological brain, creating a division that still exists to this day. Psychiatry focuses on the brain and psychology focuses on the “mind.”

This is interesting because this has never happened in any other field of medicine. Cardiologists never divided their specialization into the physical heart and “the soul,” even after the first heart transplant was done using an artificial heart. There was no debate over whether those first heart transplant recipients were fully human anymore. The field didn’t divide when a baboon heart was transplanted into a little girl. No one felt she had lost her humanity. That was because all her parents cared about was keeping her alive.

 

Psychiatry doesn’t destroy lives. Psychiatry does what all medicine tries to do, which is save lives. And, like all areas of medicine, it doesn’t always succeed. To this day, parents with children who must undergo organ transplants must also face the reality that the treatment can kill. The drugs necessary to suppress the body’s natural immune response to a foreign body can lead to secondary illnesses that also require treatment.

 

But when you are told your child needs a heart transplant, no parent thinks about that. All they think about is they want their child alive. Statistically, their child will still have a shorter lifespan. Statistically, their child is more likely to die from infections that are harmless to most of us. Statistically, their child will never be who they were before.

 

But no parent ever struggles with that decision. They will pay any price to keep their child alive longer, even if they are not the only ones who will have to pay that price. The child will pay that price, too.

 

But parents do it because it is their biological imperative: as parents, we are biologically driven (in the absence of an overriding mental illness or personality disorder) to preserve the lives of our children at any cost. This imperative is so strong we will kill for it without a second thought, let alone injure ourselves.

It is so strong, like the imperative to eat, the imperative to drink, the imperative to have sex, all base instincts of humans, that its absence can only be attributed to a biological failure within the brain’s neurochemistry. All the trauma and abuse in the world cannot take it away (although it can minimize the desire for sex and food). Don’t believe me?

 

Ask Jaycee Dugard.

 

Jaycee Dugard is a hell of a mother. She would have killed to protect her children, even though they were the product of being raped by Philip Garrido who kidnapped her and held her for 18 years. Dugard never let Garrido lay a hand on her two daughters, even if it meant she had endure more of his sexual violence.

 

Now that is a heroic sacrifice for your children. Nothing I have done or ever will do could compare to that. My sacrifices are very, very mild in comparison.

 

Dugard’s psyche “her mind,” was so shattered by her ordeal that it will probably take her the rest of her life to recover, if she ever does. But her brain always did and always will defend her children.

 

It would appear that physical human brain, even though we understand so little about it, is stronger than “the mind.”

 

Which brings me back to psychology. Generally, you go to a psychologist because you don’t “feel” right. The psychologist and you then go looking for the source of this discomfort, looking inside, starting with problem “Z” and trying to trace it all the way back to cause “A.”

 

In other words, you go looking for the devil in you.

 

But the human brain is not simple, and tracing “Z” back to “A” is just too simple. It’s not like you were born a blank slate. However much you may want to believe the environment created you, that’s a cop out. Your environment and your response to it SHAPED you, but it did not create you. “A” is not where your pain began. “A” happened before you were born. “A” happened at the moment of your conception, when chains of DNA began to form into long strings of genes, which in turn folded up into your chromosomes.

 

That’s not to say shit didn’t happen after that. Life is tough.

 

But it didn’t make “Z” either, because you’re not at “Z,” not unless you are reading this from your deathbed. I don’t know what letter you are. That’s up to you. Maybe you’re at “T,” or “P,” or “M.”

 

Where-ever you are, of course your environment shaped part of where you are today, but it wasn’t in chronological order. Maybe, right now, at “M,” you feel pain. Chances are there is not one single previous letter that caused that pain. Sure you got hurt at “D” and “G” and “L,” and collectively those mix with “A” and every other letter to make you feel what you feel today, but it wasn’t any one of those. And none of those are going to kill you because if they were going to you wouldn’t have made it to “M.”

 

You are stronger than you think you are. That is what I tell everybody who says to me, “I don’t know how I could do what you do.”

 

You just do.

 

I don’t know how Dugard survived what she survived. She just did.

 

You do what ya gotta do to get from one day to the next. That’s life.

 

I think perhaps one of the reasons that Jani’s diagnosis bothers some people is because they think a diagnosis of schizophrenia is “Z.”

 

It isn’t. Jani’s not at “Z.” She is a long way from “Z.” Three years ago, she was moving rapidly toward “Z.” Slowly, gradually, we slowed it down. Then, slowly, gradually, she turned it back. She “reset” to the letter she was when she became acute. Now she is moving through the alphabet again, but she is doing it on her own terms. That’s what the medications did for her.

 

I don’t know where Bodhi is, but I do know Bodhi is also a long way from “Z.” Right now it is autism. Maybe it will stay that. Maybe it won’t. But either way, Bodhi has a lot of the alphabet left to go.

 

Psychology and psychiatry are finally, after almost a century apart, coming back together. They are coming back together because neither side has all the answers. Who we are is not purely biochemical and it is not purely environmental factors. It some combination we lack the ability to fathom. “The Mind” is not totally separate from the biological brain. Yet, I cannot say for certain that “The Mind” is a socio-cultural concept, either. At any length, “The Mind” is you, which includes your brain. Or is that your brain includes “the Mind?”

 

Maybe it is just easier to think of ourselves as independent of our biology, more than just a sequence of DNA. I get that. We want to “be.” We want to “exist.” We want to say, “I think; therefore I am.” We want to be more than the sum of our parts. That is our gift as humans, to conceive of something greater than us, to conceive of lands beyond the horizon of our vision, to conceive of worlds we cannot see beyond the immense darkness of space.

 

The two most important words in human language is “I am…”

 

Finally, back to the music videos. I have another reason I include them.

 

Yes, it is very “high school.” I don’t deny that. But it’s also how I can relate to Jani. It is our language.

 

There was a time when my teaching her was our language. I still can teach her but not like in the old days. Things that used to fascinate her don’t hold her interest anymore. She doesn’t love to learn like she once did. That is gone. Will it ever come back? I don’t know. We’re not to “Z” yet. But that loss has been hard for me.

 

There was a time when “silliness” was our language, and sometimes it still is. But it gets hard to be silly when she is constantly talking to me about “friends.” She will tell me what they say and then say, “Say it,” wanting me to repeat it back to her. Most of the time I try. Lord, I try. But when Bodhi is screaming or my mind is on errands we need to run, it gets hard. Bodhi needs so much more and Jani still needs so much. Last week Susan and I had dental appointments. We only go once a year.  We did the appointments back to back. I took the kids for Susan’s appointment, taking them to Page Museum at the La Brea Tar Pits. We had a good time, although Bodhi had no interest in the animatronic Wooly Mammoths and Ground Sloths fighting off a Sabre-Tooth Cat. He kept pulling against me, screaming to go back to read books in a little library section he had seen. Eventually, he broke free and ran back. I chased after him, hearing Jani tell me that she wanted to see something else and me trying to explain over my shoulder, forty yards down the concourse, that I have to stay with Bodhi and telling her she needs to come with me and praying, as I am running, that when I finally catch Bodhi and look back over my shoulder, she will be there.

 

She always is.

 

Anyway, while Bodhi was looking at books, I could see Jani getting bored. She started throwing stuffed animals and trying to tear the books. So I picked up a stuffed animal of a sabre-tooth cat and started talking to it, saying, “You used to eat us.”

 

“Well, you were so tasty,” I made it reply. Out of the corner of my eye, I see Jani smiling and rubbing her hands together.

 

“But now you’re a sweet kitty.”

 

“I know! Once we were feared predators and now we use litterboxes? What happened?”

 

“Didn’t see that one coming, did you?”

 

“Not at all. I used to eat you humans for lunch.”

 

“But who’s in the Tar Pits now, huh? It’s not us! It’s you!” Jani laughs as I kiss the stuffed sabre-tooth cat on its nose while playfully mocking it for being extinct.

 

But those moments are rare. I dropped Jani and Bodhi off with Susan to go for my turn in the dentist chair. Fifteen minutes later I get a call that Jani doesn’t want to go to school.

 

I was upset. Fifteen minutes ago she was fine. I can’t even get my fucking teeth scraped without Jani withdrawing or becoming mildly psychotic (disordered thinking but no violence).

 

I am not going to lie. I get bitter as hell sometimes. I couldn’t take Susan out for her birthday. It is never just the two of us. When Jani is around there is no break because she cannot self-entertain herself at all. She needs to talk all the time, usually about her “imaginary friends.”

 

I used to think I could deal with it, but there are times now where I have to tell Jani to give me a break from her world. She looks down and I sense the sadness in her and it rips me apart, but I can’t help it. There is only so long I can pretend to care about things I can’t see.

 

Then she will look up and say, “Okay.” I will watch her make a few abortive attempts to leave, like she is trying to force herself to go. “I’ll go play with Bodhi.”

 

She will go over to Bodhi and sit down next to him. She taps him on the back. “Good baby,” she will say, looking down at him. I can see it in her eyes, the wish he would talk back to her. She rubs his back, again as if forcing herself to, not because she is angry but because she wants to be a good big sister, even though she knows it is beyond her means. Then she kisses him on his head and comes back over to me.

 

Still desperate for a few moments, I ignore her. She wanders around the living room, looking up and around.

 

Always I know, you’ll be at my show…

 

I look up from the computer. Jani is singing softly to herself.

 

“…watching, waiting, commiserating.”

 

I’m stunned. “Jani, is that Blink-182?”

 

Jani turns to me and nods. She starts again….”All the small things…

 

We’ve heard that song on the radio a thousand times. I never thought she paid attention and now here she is, singing “All the Small Things” lyrics off the top of her head.

 

I never liked Blink 182 back then. I thought their commercialized pop-punk was annoying.

 

Now I am a Blink 182 fan.

 

Every song that comes on the radio, Jani asks me what it is.

 

“What’s that?”

 

“’Losing My Religion’ REM.”

“’The Cave’ Mumford and Sons.”

“’I Wanna Be Sedated’ by the Ramones”

“’Surrender’ by Cheap Trick. You know they’re huge in Japan.”

“’Don’t Stop Believing’ by Journey. They’re from San Francisco.”

“’Down on the Corner,’ Creedence Clearwater Revival.”

“’Riding on the Metro,’ by Berlin, but they’re not actually from Berlin. They’re from here.”

 

Everyday she surprises me singing a song she heard on the radio. She picks up lyrics quickly. Her favorite is still Florence and the Machine. She waits impatiently for “Dog Days” or “Shake it Off.”

 

“And it’s hard to dance with the devil on your back, so shake him off…”

 

Good advice, Florence.

 

[video:

100×100]

 

"The American Nightmare"

I could never do endorsement deals.

 

It’s not necessarily out of any moral sense. I couldn’t be a shill, even if I wanted to. I’m just a lousy salesman.

 

Probably not a good thing to admit when you have a book coming out. The sales division at Crown isn’t going to be too happy about that.

 

Obviously, honesty can be part of the problem. I am brutally honest, as regular readers of this blog know. That’s not from any sense of morality. No, I’m so honest I have shot myself in both feet on more occasions than I can count. It’s gotten me fired from jobs. It’s lost me friends.

 

That’s not morality. That is compulsive.

 

I am honest because I can’t not be. It’s how I’m hardwired. I will open up my big fat mouth not only when it is of no benefit to me to do so but can even cause harm to me (hence my friendly cyberstalker, “WarriorMom”).

 

But it’s not just a compulsive hyper-honesty. I can’t even sell things I believe in. If Jesus was standing right next to me, I would have a hard time selling you that God exists.

 

Which can be a problem if you’re an advocate for a cause because, let’s face it, advocacy is basically selling except rather than selling a product you are selling a concept of a better world than the one we currently have. It’s the same basic principal. You have to convince the public to support something that affects you directly but, at the end of the day, will not drastically affect the life of the person on the receiving end of the sales pitch one way or another.

 

My first direct experience with mental health advocacy was when Susan and I were asked to participate in a team at the Ventura County NAMI Walk in 2009. I was vaguely familiar with the concept of “walking” to raise money.  I had heard of the Susan G. Komen “Race For the Cure” Foundation Walks. Jani’s old school does a “Walk” every year to raise money for the PTA.

 

But I expected the NAMI Walk to be different, because NAMI has something the Susan G. Komen Foundation and the Oak Hills PTA don’t.

 

An enemy.

 

Yes, breast cancer is an “enemy” in the sense that it kills millions of women, but that enemy doesn’t have someone pulling the trigger other than your own DNA. This is not diminish those who fight against breast cancer, or any other cancer for that matter. They are fighting against Nature, which is the biggest enemy you can take on. My hat is off to them.

 

NAMI’s enemy is not mental illness, or at least it is not supposed to be. I only know of one organization dedicated to funding research in cures for mental illness, and I can’t even think of its name off the top of my head.

 

In general, mental health advocacy is not looking for a cure. Before you can find a cure for something, you have to understand what it is. And before you can understand what it is, you first have to get the rest of the world to acknowledge it exists.

 

Hence, NAMI’s “enemy,” and the enemy of all mental health advocates, is society itself. The weapons of the enemy are either a completely non-existent mental care system, a woefully inadequate one or, my personal favorite, a bureaucratic government agency made up of clock punchers who simply don’t care enough to buck the system they work for and demand better for the those they are supposed to help (my disdain for the L.A. County Department of Mental Health and their “contracted agencies” like the Santa Clarita Child & Family Center are well documented in previous blogs).

 

For those of us in the field of mental health advocacy, our enemy is right in front of us. It’s that big building downtown that says “City Hall” on it or that bigger building that says “State Capital” or that architectural salute to American political failure, the US Congress (which today makes a better tourist attraction that a house of leadership-that goes for both Parties). It amazes me that one of their own (Gabrielle Giffords) could get shot in the head by a young man with schizophrenia and they still sit on their fat asses. I commend the effort it must have taken them to get to their feet with Rep. Giffords returned to the floor of the House.

 

I could say something really awful here about what to do if voices in your head are telling you to shoot someone, but I won’t. It takes everything I have not to write it (although I essentially did so I guess there is no point in pretending anymore). Seriously, how many more dead nine year olds is it gonna take?

 

A lot, until one of those nine year olds happens to belong to a member of Congress. Or until the person who pulled the trigger happens to be the son or daughter of a member of Congress.

 

Someone recently told Susan that the lack of mental health care is a “public health emergency.” She’s right, but I’ll take it one step further. It’s a moral emergency. It is a civil rights issue (when a government prevents a group of people from their God-given right to happiness, dignity, and a sense of well-being then that is a violation of civil rights).

 

It is the failure of our society to help those least able to defend themselves. They can’t defend themselves. They are too busy fighting a war inside their own heads. They need us to defend them from the world outside. That is our moral imperative.

So when I agreed to do the NAMI Walk, I expected a march through the streets to City Hall, chanting and raising our fists in the air. I thought we were walking to let the world know our children, our siblings, our parents, our families, were here and by God we weren’t going to let them die.

 

Except that we walked along the beach in Ventura to a swamp, then turned around and came back again. We didn’t even walk in a circle. We literally backtracked along our previous route.

 

There were no bullhorns. There were no chants. There were no fists in the air. There was no righteous indignation at the lack of services for the mentally ill.

 

In short, there was no fucking anger.

 

Those of you who follow me on the Jani Foundation Facebook page know I have been very critical of NAMI and other mental health advocacy groups, which I suppose to an outsider seems like cross-purposes. Because it fell that way. It felt like those organizations didn’t represent my family and didn’t represent the families and individuals who come to the Jani Foundation page everyday because they don’t know where else to go. As time passed, I found myself with a large group of people who desperately needed help and I couldn’t provide it, so I attacked the organizations with the deep pockets. Because I was angry that they weren’t helping the families I knew.

 

Which is partially true. Whether NAMI is helpful really depends on what you are looking for. If you are looking for emotional support, they are good for that. I was looking for emotional support. I felt like I was in charge of a group of refugees, trying to live in the middle of a battlefield between their child and their child’s mental illness. I have watched their children suffer and I have watched these parents do everything in their power to ease that suffering, often at the expense of their own health. I have watched them fight every day to pull their child back from the jaws of the beast that eats the mind of their baby or babies. I have watched them struggle desperately to hold on to the child they have, both physically and mentally. I have watched the hearts of both the children and the parents break. I have seen families torn apart.

 

I have seen children fight with everything they have against a demon no one else can see.

 

You damn right I was pissed off. Emotional support is all well and good but I wanted to ease suffering and I needed material help to do that, material help that no organization or government entity would provide. What help I have been able to provide has come from you: a select group who came here to this website and took up the fight as well. And what really amazes me about that is it wasn’t necessarily your fight. But you took it up.

 

You know a warzone when you see one.

 

Yes, my advocacy is defined by anger. I know I have lost people because of that. But it is hard to see what I have seen and not get angry.

 

And I now realize that is the real reason why I criticized NAMI and other non-profits in mental health: I expected to find an anger that would meet mine and if you weren’t angry like me then you just didn’t get it.

 

In that sense, I was wrong. I wasn’t wrong about being angry. I was wrong that if you weren’t angry, you didn’t get it.

 

I often refer to the Jani Foundation as “the Malcolm X of mental health advocacy,” a reference to Malcolm’s more militant stance versus Martin Luther King in the Civil Rights Movement. This perception of a dichotomy between the two in their approach to Civil Rights is not entirely historically accurate. King was capable of righteous anger and Malcolm X could crack your soul open like a walnut without ever raising his voice. The perception comes from the fact that King was fighting for an end to segregation while for many years, until he left the Nation of Islam, Malcolm advocated for it.

 

Once, a white college girl came into a restaurant owned by the Nation of Islam where Malcolm was and told him she wanted to help blacks and whites get together. In Spike Lee’s 1992 film, this scene is portrayed a little differently where the white girl says she want to know how she can help and Malcolm tells her, “You want to help? Go home.” What he actually said to her was, “There isn’t a ghost of a chance.” She went away crying.

 

I don’t know that I’ve made anyone cry but I have similarly turned away people like that college girl, for the same reason Malcolm did: she didn’t get it and there was no way she could get it. I wonder how many young people Jani’s story has “inspired” who I then rejected. I don’t know the exact number but I know it’s more than a few. What turns me off them is their positivity. It just rubbed me the wrong way. They have no fucking clue, just like that white college girl.

 

Slowly, this sense of segregation between myself and other mental health organizations conflated into a class issue. Most founders of mental health advocacy groups are wealthy. Most board members are wealthy. Many times it is the board members themselves who make the largest donations (with the exception of NAMI).

 

Again, because they didn’t appear to feel the rage I felt, I dismissed them as inauthentic. They weren’t raising their mentally ill kids. Nannies or very nice private residentials were. They didn’t live the same life. I criticized their fundraisers as “socialite get-togethers.”

 

Tomorrow night, the 8th, Susan and I will be speaking briefly at a fundraiser for The Flawless Foundation, to be held at the Fred Segal store in Santa Monica. It will be the first time we have attended a non-profit event or fundraiser since that NAMI Walk in 2009.

 

Why?

 

Mostly it is because the Flawless Foundation actually provides services to mentally ill. They provide gardening therapy and music therapy, among others. They fund professional development for special education teachers. In short, they do much of what I want the Jani Foundation to one day do.

 

Janine Francolini started the Flawless Foundation after her family moved from New York City to Portland and discovered that the support services that had existed in New York were absent in Portland.

 

This is from their “About” page at www.flawlessfoundation.org/about/

 

“The Flawless Foundation creates and supports programs that accomplish our mission of seeing, discovering and nurturing the perfection in every child.

 

Our philosophy of giving is inspired from a place of gratitude and passion for children. We are creative, hands-on and proactive in our vision to enrich the lives of children who courageously face challenges of neurodevelopmental and psychiatric disorders on a daily basis….”

 

I could never write something like that. I wish I could but I have seen too much shit.

 

Except so has Janine.

 

Malcolm X believed in segregation until he undertook the Hajj, the annual pilgrimage to Mecca that every male Muslim must undertake at least once in his lifetime, if possible. There he prayed beside Muslims of all colors. This is what he wrote in a letter back to the US:

 

“[L]istening to leaders like Nasser, Ben Bella, and Nkrumah awakened me to the dangers of racism. I realized racism isn’t just a black and white problem. It’s brought bloodbaths to about every nation on earth at one time or another.

 

Brother, remember the time that white college girl came into the restaurant—the one who wanted to help the [Black] Muslims and the whites get together—and I told her there wasn’t a ghost of a chance and she went away crying? Well, I’ve lived to regret that incident. In many parts of the African continent I saw white students helping black people. Something like this kills a lot of argument. I did many things as a [Black] Muslim that I’m sorry for now.”

 

I have come to realize that mental health advocacy needs two kinds of people: leaders and soldiers. I’m not a leader, at least not a political one. Janine can get major corporate sponsors. I will never be able to do that. I can’t clean myself up enough to do that. I’m a soldier. I’m your pitbull. I will get down in the trenches and fight the battle alongside you.

 

But we need somebody back home trying to end this war.

 

Tomorrow night, this fundraiser at Fred Segal is part of my pilgrimage. It’s the start of me trying to put the anger behind me. It’s the start of me trying to work with the leaders.

 

Because kids like Jani need both of us.

 

 

 Event info: http://www.flawlessfoundation.org/2011/11/evening-of-gratitude-and-holiday-shopping-at-fred-segal/

 

Update 12/8/11 6:13pm PST: Susan and I have had to cancel. Jani has destabilized, driven by extreme anxiety at our leaving. So we have decided that the best interests of our children we had to cancel. Our deepest apologies to Janine Francolini, the Flawless Foundation, and tonight’s guests.