The Crystal Ball She Wished She’d Had

I read the comments on an article at ABC News called 5 Disturbing Things We Learned Today About Sandy Hook Shooter Adam Lanza and it’s very clear that most people think that those of us who have loved ones with serious mental illness should a) understand the depth and severity of their illness in all ways, at all times; b) deliver appropriate treatment in all ways and at all times; and c) basically read their minds and use our handy dandy crystal balls (they give us those at diagnosis, you know, so we will always be aware when someone in our family is going to do something unimaginable) to predict all possible behaviors so as to protect others from our “psycho” family members.

I read the comments on an article at ABC News called 5 Disturbing Things We Learned Today About Sandy Hook Shooter Adam Lanza and it’s very clear that most people think that those of us who have loved ones with serious mental illness should a) understand the depth and severity of their illness in all ways, at all times; b) deliver appropriate treatment in all ways and at all times; and c) basically read their minds and use our handy dandy crystal balls (they give us those at diagnosis, you know, so we will always be aware when someone in our family is going to do something unimaginable) to predict all possible behaviors so as to protect others from our “psycho” family members.

Naturally (because we live in the good old USA), we should do this on our own, in the privacy of our homes, with little or no help from our communities.

Good to know.

The consensus seems to be that Nancy Lanza is 100% responsible for what Adam Lanza did and not only did she deserve to die, but we should probably exhume her body and beat the crap out of her regularly. I mean, holy crap, I can Monday morning quarterback like anyone else, and some of Adam’s parents’ mistakes are pretty clear from where I sit (you couldn’t pay me enough to keep a gun in my house). But when you’re *in* a volatile situation, and you’re trying to make everything OK, and you’re trying to live life, and you’ve been to the ER and the doctor and you’ve called the police and you’ve dealt with the system and you’ve been blown off over and over and over again (usually without any hint of kindness) and the school won’t help and they call CPS on you and you know you’re all alone in the world, the fuck do people expect parents to do? I’ve heard it’s not cool to lock volatile and difficult children in the basement so hey, how about we quit flogging this mother and maybe create some solutions? Maybe, I dunno, improve the way we treat families with challenged children? Meet us at the ER with caring and treatment instead of reports to CPS? Stop telling us we caused it with our shitty parenting? Shorten some of those damn waiting lists so when we’re in crisis, we don’t have to wait weeks or months for help? Because this has been a banner week in my Facebook timeline as far as parents begging for treatment for their kids (a day in the ER with no help here, a call to the police who declined to help with a violent child there, three CPS reports, and of course the relentless drumbeat of schools that will NOT follow BIPs and IEPs as they were written) and really, we can’t have it both ways. We can’t vilify these parents AND expect them to make everything OK on their own.

People who feel all-powerful as parents have never been up against shit like this. I promise. With the weight of my own experience and my dozens of friends who are parenting kids with MI, I tell you, we cannot handle this on our own. Please stop asking to do magic.

I have no idea what Adam Lanza needed, and I have no idea if his parents were in some kind of denial about his issues. I have a pretty damn good idea, though, that even they knew what he needed and tried to get it, it didn’t exist.

So hey, crucify Adam Lanza and his parents if that helps you sleep at night, but the fact is that if your brain or that of someone you love goes kerflonk, you might meet our mental health care system up close and personal, and you might find out that it’s not a system at all. You might find out that banging on doors year after year after year makes a person pretty tired, and advocating for someone, no matter how much you love them, can defeat you. I hope you don’t find out, but you might. And then you’ll be stranded here with the rest of us, without crystal balls, without magic wands, without super powers of any kind. You would just be an ordinary person doing the best you can in extraordinary circumstances, and like ordinary people do, you might fuck it up completely.

Because you know what? Flawed, ordinary people screw up, and if there’s no one there to catch your mistake, something terrible could happen. Something so awful, people will flog you after your death. And to think, once upon a time, Nancy Lanza was a young woman in love, and she wanted to have a baby. She did her best by that baby, and it wasn’t nearly good enough.

And look at the cost. Look how high the price, for leaving her (and millions like her) alone, and for preserving our right to own weapons. The cost is incalculable. Unimaginable. Inconceivable. It doesn’t have to be this way, and yet this is the way we have decided it will be. I hope we change our minds very soon because there’s not a damn thing in the world that justifies the circumstances that lead to rooms full of dead children.

Sanctimonious Concern

There are times to call police, but there are also times to speak our concerns to each other, and there are times to check our 21st century, first-world paranoia and let it go.

In 1994, I lived in a rental house not much bigger than a breadbox with my then-husband and our baby. Next door was an even smaller rental house, barely the size of a garage.

The young woman (and I do mean young; I was 23 and she was even younger) who lived in that tiny house had a two-year-old son who seemed to perpetually surprise his mother with his presence. We chatted occasionally in our common backyard and I was left with the impression that she was flummoxed by the babyness of him. Now that he spoke and walked upright, he still hadn’t become a reasonable person, and that startled her.

One afternoon when my then-husband came in from work, he said, “You have to call CYFD on that girl next door. Her kid is playing in the car.”

I went out front and sure enough, there was my neighbor’s two-year-old son, sitting in the driver’s seat of her car, turning the wheel back and forth and making those driving noises that come pre-installed on some children. I scooped him up and carried him into the house and found his mother in the kitchen, cooking dinner.

“He was playing in the car,” I told her. “That’s not safe. Actually, he really shouldn’t be out there without someone to watch him since there’s no fence.”

“Oh,” she said, looking concerned. “I thought it would be OK. I told him to stay in the yard.”

“He’s too little,” I said, “and a car isn’t a safe place to play. He could accidentally release the brake, or he could get locked in there.”

She was embarrassed. “I’m sorry,” she said, apologizing because she felt bad even though she hadn’t hurt me.

“Well, he’s fine, and it’s all good. Just remember to keep the car locked, and let me know if you need help watching him!”

I went back to my house, praying that I had done the right thing. Maybe she did need professional guidance. She seemed so profoundly clueless. On the other hand, her son was well-fed, happy, and had never had any injuries that I’d seen. Our houses were very close and I never heard any crying beyond what’s normal for a child that small.

After our conversation, I never saw my neighbor’s son outside without his mother’s supervision again and I became more and more comfortable with my decision.

Across my adult years, I’ve had lots of interaction with the child protection system, mostly as a mandated reporter but also as a victim of malicious reporting. I’m also a parent and an observer of trends and what I’ve noticed is this: people are much quicker than they used to be to call police about suspected child mistreatment.

Is that good? Yes and no. I’m happy to wave good-bye to the days when what happened to children was nobody’s business but those children’s parents. Kids whose parents hurt them or fail to keep them safe deserve better, and we need a system with the power to intervene on their behalf.

On the other hand, 911 is no one’s personal nuisance reporting number, and child protective services is not the place to call when there is mild concern, or when a parent does something that doesn’t seem like the best possible decision. I think social media drives some of this because I’ve seen (haven’t we all seen?) ridiculous statements like parents who feed their kids junk food are ruining those children’s health and should have them taken away, or women who have planned c-sections are abusive, on and on. Every parenting choice that seems less-than-ideal to the observer gets the “abusive” placard hung around its neck.

I remembered all my interactions with cops and child protective services yesterday, when I read this piece at Salon about a mother who left her child in the car for a few minutes on a 50 degree day while she ran into a store to buy that child a pair of headphones. The legal problems caused by the bystander who took video of her car and her child and subsequently called police have dominated her family’s life for two years.

This represents a major cultural shift that I’ve witnessed in my 20+ years as a parent. When my eldest children were very young, in the mid-90s, I didn’t think much of leaving my children in the car under the conditions that it was not hot out, I would be no more than a couple minutes, and I could see my car from inside the store. By the mid-2000s, when my youngest son was a toddler and pre-schooler, I felt much more anxious about doing that. I was not more concerned about kidnapping, or someone stealing my car with my child inside, or any of the supposed risks that always taking my children with me are meant to ameliorate. No, I became worried about a bystander who might call the police about “neglect.”

I did once call the police about a child left alone in a car. It was nearly 100 degrees and I stood ready to smash a window if the baby (who was sweaty, but was also laughing at the goofy faces I was making at her through the window) seemed in distress. Thankfully the police arrived less than a minute after I called and they popped the lock and put the baby in an air conditioned police car until an ambulance arrived.

There are times to call police, but there are also times to speak our concerns to each other, and there are times to check our 21st century, first-world paranoia and let it go. The police, courts, and child protection agencies really do have better things to do than indulge our sanctimonious concern over how other people are parenting. Resources are limited and children who are being beaten, molested, or starved, need those resources devoted to them. There are children out there who are being left alone for hours, not minutes.

When we see a child in immediate danger, of course we should call 911, and when we suspect genuinely neglectful or abusive behavior, it’s time to notify child protective services. In the meantime, I think we all need to get a grip, because most of the kids are OK, and most of the parents, fallible though we are, are doing just fine.

You Chose

If only we were half as powerful as we believe ourselves to be.

You took no medications and consumed nothing artificial during pregnancy. Your baby is pure and the least a mother can do is sacrifice her comfort for 9 months.

You consulted with your health care provider during pregnancy and chose to continue your anti-depressant. Your baby needs to have a mother who is well and healthy.

You chose cautiously. Nothing bad is ever going to happen to your child.

*          *          *

You chose disposable diapers because your baby needs your attention. How can you stay focused on her if you’re scraping poop and washing diapers?

You chose cloth because no baby of yours is going to sit in some a chemical-filled, disposable paper “garment.”

You chose elimination communication because your baby deserves better than to sit in his own waste.

You chose carefully. Nothing bad is ever going to happen to your child.

*          *          *

Your baby slept in her own crib right from the beginning. Babies need to learn to self-soothe, to be independent.

You co-slept, your baby nestled between his parents all night long. Babies are small and vulnerable and need their parents’ presence so they know they are safe in the world.

You chose thoughtfully. Nothing bad is ever going to happen to your child.

*          *          *

Your toddler rode in a stroller or wore a harness until he was four. No child of yours is going to get lost or hit by a car because her parents didn’t restrain her properly.

Your toddler was free to walk whenever he wanted. No child of yours is going to have his freedom curtailed because his parents didn’t keep their attention focused on him.

You chose judiciously. Nothing bad is ever going to happen to your child.

*          *          *

You took your family to church every week because children should be grounded in a faith tradition so they have a moral compass and a sense of connection.

You avoided organized religion because children should be allowed to explore a variety of world views and choose faith (or not) according to their preferences.

You chose scrupulously. Nothing bad is ever going to happen to your child.

*          *          *

You were a firm disciplinarian with your children. You had high expectations and you issued unpleasant consequences when your children fell short.

You avoided all forms of punishment with your children, preferring them to learn from the natural consequences of their behavior.

You chose conscientiously. Nothing bad is ever going to happen to your child.

*          *          *

You taught your child everything about sex. You taught him about protection, pregnancy prevention, and consent. You taught him about respect, kindness, and risk.

You taught your child that sex is something she absolutely may not even consider until after she is married. You taught her that sex is sacred and that she must protect her purity no matter what.

You chose morally. Nothing bad is ever going to happen to your child.

*          *          *

You kept your children at home, arranging for all their playdates to be supervised by you. You spoke to their teachers often, visited their classrooms, and joined them on all their outings.

You let your kids run the neighborhood with friends and sent them to the neighborhood school. They went to the park, the swimming pool, and the movies accompanied by people their own age.

You chose prudently. Nothing bad is ever going to happen to your child.

*          *          *

You saw a person at the grocery store, or heard a story on the TV news, or read about a tragedy on the internet, and thank God nothing like that is ever going to happen to your child.

If only his parents had been moral. If only her mom was conscientious. If only his dad had been more careful.

*          *          *

If only we were half as powerful as we believe ourselves to be before something bad happens to our children.

For Kelly Thomas

Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving.

I’m compelled to put some words here in honor of Kelly Thomas, some kind of expression of solidarity with his family. I want to express my outrage at yesterday’s acquittal of the men who murdered him, but my feelings are big and language seems too small. I went to sleep last night thinking of the Thomas family, woke up this morning thinking of him and praying a prayer about the men who killed Kelly that I’m pretty sure God doesn’t honor.

So I will tell you this small sliver, this little piece, and it is this: Kelly Thomas is Kelly Thomas. He is described in the news as a homeless man or a mentally ill man or a man with schizophrenia. Those things, those descriptors, are all true, but Kelly Thomas was Kelly Thomas and he was a person and he was beloved of his family and those things are also true.

The surveillance video shows that Kelly Thomas was beat and beat and beat by Fullerton police officers on July 5, 2011 and while the cops beat him he cried for his dad and God and his mom and they beat him some more until he stopped moving. When Kelly was finally unconscious, lying on the hot pavement, handcuffed, his blood pooling around him, the police officers began the anxious process of creating a suitable narrative. “He was really fighting,” one says. “He was definitely on something,” says another. Yes, yes, true. A person in the process of being beaten to death will fight. Terror is a powerful drug.

And they—those police officers, all six of them who got on top of, beat, pistol whipped, tased, and ultimately murdered a terrified, unarmed man—slept in their beds last night. They kissed their children goodnight.

The last time Ron and Cathy Thomas kissed their son goodnight was July 10, 2011, when they removed him from life support.

Think about that, because I can’t stop thinking about it: their babylove, the child for whom Cathy and Ron Thomas stayed up too late on Christmas Eve wrapping presents, and who they taught to ride a bike, who they took to the doctor when he had an earache and later, when he had other, more mysterious symptoms, and they fought and struggled and loved and tried to rescue him when schizophrenia grabbed him and wrestled him away from them and it was they who had to make the choice. It was they who signed the papers that authorized the hospital to turn off the machines. Mom and Dad, who couldn’t protect their son, who will live with the image of his devastated and dying body forever. They, who sat in the courtroom every day, listened to the audio of their son crying out for them, and finally listened to the acquittal of the men who hurt him unto death.

I kissed my own son goodnight, too. My little boy, who is terrified of anyone he doesn’t know touching him, who sometimes acts in inexplicable and frightening ways, who often doesn’t understand what is happening around him. My boy, whose illness sometimes makes him seem weird and unlikeable…how, how, how to make the world understand that he is my beloved son? That we, the parents, siblings, spouses, children, and friends of people with mental illness know them to be people? They are not the monsters in the movies or the villains in TV shows or amusing pop-culture characters but people.

Kelly Thomas was not disposable. He deserved so much better. His family deserved better, and all of us who live with or love someone with severe mental illness deserve better.

There are no disposable people, but we sure as hell act as if there are.

Please visit this link to sign a petition to the federal government, requesting they investigate the death of Kelly Thomas.

Come As You Are

For us, the believers, the Jesus-people, the bible is not a book of history and rules. Our God is not a God of hate.

I am a Christian.

It’s hard for me to say that in a public forum, just those four words. Usually, if it comes up in conversation, I push out a dozen or more words in a rush: I’m a Christian, but I’m a peace and justice Christian, a love everyone Christian, and if you want to know about my faith I’d love to tell you, but if you don’t want to to talk about it, that’s cool too.

Here is the one of the saddest things I have ever heard after I reveal that I follow Jesus: Wow, I never would have guessed you were a Christian. You seem so nice.

How’s that for a punch in the guts?

I’m not actually that nice. I have a terrible temper, a tendency toward resentment, and a penchant for blue language that’s well documented here on my blog. I’ve done drugs, drunk alcohol to excess, stolen, gossiped, hurt people, taken more than my share, cheated, lied, and been, in general, a deeply flawed human being.

Flawed like Paul, who wrote in Romans 7:15, “I do not understand my own actions. For I do not do what I want, but I do the very thing I hate.” Broken, screwed up, sinful. Human.

What’s “nice” about me is, I know I’m not better than anyone. (Actually, sometimes I think I’m better than someone, and sometimes I feel inferior. This humility thing is a challenge.) That’s what people experience as niceness from Christians: if we don’t start beating them over the head with our big, leather-bound, gold-embossed bibles and telling them how utterly screwed they are, how messed up, evil, and doomed, they experience us as nice.

Folks, something’s wrong when people hear the word Christian and their first instinct is to duck.

Some Christians are dominating the media with the message that our faith is all about following a moral script, and that most of the items on that script have to do with what we do with our genitals, and when, and with whom. How sad, to reduce our collective story to one of penises and pregnancies. Our story began when Abraham went on a journey and continues now, a story of extravagant love, the tale of a God who pursues us, in all our brokenness, throughout history. God is not waiting for us to get better, or to get perfect. God is not waiting for anything.

For us, the believers, the Jesus-people, the bible is not a book of history and rules. Our God is not a God of hate. We’re living in a story that began with the people in the bible and continues now. The bible is alive, our faith is alive, and we are privileged to participate, not as servants but as the sons and daughters of God. We are Deborah, David, Abraham, Mary, Paul, James, Rebekah, Abigail. Flawed, and beloved of the divine.

We don’t have all the answers. We don’t even know most of the questions. That’s OK, because Jesus never said, Go forth and be perfect in every way, and then force all the other people to be perfect in the ways that you deem right, making certain nobody ever does anything with their genitals that seems icky to you!

Not in my bible. Jesus said, First, love the Lord your God with all your heart, and with all your soul, and with all your mind, and next, love each other. (I paraphrased that from Matthew 22.)

Love. A big party, a festival of love, and everyone is invited. Everyone. Pull up a chair and sit down. This is the ultimate come-as-you-are.

Issy and Kelli Stapleton: Murder, Suicide, and Family

I have been deeply disturbed for weeks. I keep trying to write this blog post and backing away from it, over and over. I have decided not to publish it, and alternately been compelled to publish it. Ultimately, this is my truth. This is what my family survived, and if it was the reality for my family, then it’s the reality for other families because we aren’t unique. But back up; this doesn’t begin with me, but with another family.

The facts of the story: On September 3, 2013, Kelli Stapleton published a blog post in which she described an IEP meeting that ended with the district school refusing to provide services for Issy, Kelli’s 14-year-old autistic daughter. Issy had just been discharged from an inpatient treatment program in Kalamazoo, MI (three hours from the Stapleton home) where she was being treated for, among other things, aggressive behavior related to her autism. While at her inpatient program, Issy had developed a good relationship with a teacher in the junior high she attended while she was in treatment. Kelli and her husband, Matt, decided that Kelli and Issy would move to Kalamazoo so Issy could attend school there and Matt and the couple’s other two children would remain at home.

Later that same day, police found Kelli and Issy in the family’s van in a rural area near their home, both unconscious, during an apparent attempt by Kelli to end both their lives. Issy spent about a week in the hospital and is now recovering at home. Kelli is being held without bond on a felony attempted murder charge.

Kelli’s act set off a virtual bomb in the special needs/disability blogosphere, and especially in the autism world. I will not guess at Kelli’s motives for trying to kill herself and her daughter (we will only know her motives if and when she tells us), but I do know how I got to the edge of the cliff that Kelli went over.

I have been consumed by what Kelli did since I heard the news. Part of that is because I know Kelli and part is because I have been close to doing what she did. Since the news broke, the cry that has gone up from autistics and people with other disabilities is, we have been dehumanized. We are not considered valuable or worthy of consideration, kindness, freedom, or even our very lives.

That is true. Our culture as a whole, and we as individuals, have not honored every person as we should. We have hurt, isolated, ostracized, assaulted, sterilized, tortured, and killed people we don’t understand. We have deemed those who seem different less worthy, and often we have done the hurting in the name of helping, calling it therapy, treatment, or religion. If you or someone you love have been on the whip-crack end of that terrible phenomenon, I am sorry. You deserve better. You deserve all good things, all the support and kindness and love that this world and the family of humanity has to offer. The people who hurt you were wrong. If they had good intentions but hurt you anyway, they were wrong. If they loved you but hurt you anyway, they were wrong.

All that said (and all that true), there is a complexity that we’re losing by insisting that a discussion of what may have caused Kelli to do what she did (or that any discussion of why so many caregivers kill or attempt to kill the disabled people in their care) is necessarily devaluing Issy and other victims. Condemning Kelli will not stop the next desperate parent from taking a similar action, and in fact may prevent people from reaching out when they are in danger.

Kelli and Issy were (and are) victims of the same system, and that system made them victims of each other. When we, the ground-level stakeholders (people with disabilities, caregivers, and people who would like the world to be more just), focus on the ways Kelli and Issy victimized each other, we let all the other people off the hook. When we vilify Kelli, or autism, or the various therapies (on which I am no expert, since my disabled child has serious mental illness, not autism), we don’t scrutinize all the people who hold the power and the pursestrings.

Think in terms of power and investment. Kelli and Issy and the rest of the family were relatively powerless. Therapies, education, and help for Issy would only come via the bureaucracies that hold the purse strings, as they do for most of us who don’t have a few million dollars at our disposal. So let’s say the Stapleton family needed a level of help we’ll call X. That X represents the amount of help that enables the family to have a life that is life. Issy goes to school all day and there is adequate care there for her to be safe, healthy, and to learn as much as she can. There is enough help in the evenings and on weekends so that the other Stapleton children can have the attention of their parents, help with homework, family meals together, and regular outings. The Stapleton parents have the space they need to nurture their relationship and their individual interests. Issy has all the appropriate therapies that her team parents, teachers, and other care providers agree she needs, and her parents and siblings have therapists, too. There is so much help that the parents are not overwhelmed and the children are not afraid.

The Stapleton parents are completely invested in the family getting help level X. Their desire is for a life that resembles normal family life as much as possible. I’m making that assumption, of course, but it’s based on what I want for my own family so it’s not a big stretch.

What are the chances that they will get help level X? In my experience, nearly zero. I know dozens of families in which there are children with extraordinary needs, and the amount of help they get is always X minus at least half.

In late 2009, I had begun to consider that suicide was reasonable, as was ending the life of my mentally ill son, Carter, then 7 years old. There was no hate in me for Carter; in fact, it seemed to me that ending our lives was the only loving thing I could do. When I read of people condemning Kelli’s actions, saying that autism or disability is no excuse for murder, I am perplexed because I wasn’t looking for an excuse to kill my son; I was looking for an excuse not to. I believed that ending our lives was the only loving response to my son’s illness and suffering that was available to me.

(Pause. Breathe. We are all well now, and very safe.)

I’m not a stupid person, nor am I in general delusional, but when I lived with unrelenting and profound stress, fear, grief, and anger, coupled with severe sleep deficit, I changed. I watched the light go out in my other children’s eyes, watched my husband descend into periodic despair, and that changed me. Some people told me I was overreacting and others told me I was a saint, an angel, and a hero, and that changed me too.

Everything about Brian’s and my lives was shredded in the early years of Carter’s life. All the things we did that gave our lives meaning and joy were gone: church, prayer, sex, family relationships, play, conversation, reading, walking, writing. All the things we did that made our lives work were destroyed, or minimized to the point of dysfunction: maintaining our home, maintaining our yard, keeping up with the laundry, preparing meals, shopping. Those things that kept us feeling good about ourselves disappeared: hobbies, friendships, art, routine medical and dental care, taking care of our personal appearance, even hygiene, and of course sleep. We slept so little for so long, I’m not sure how we functioned at all.

I’m not talking about things that we experienced occasionally, or sometimes, or during the day, or for a few weeks here and a few weeks there. I’m talking about every minute, day and night, for months and years. We know that war and poverty change the structure and function of the brain; it’s not a stretch to assume that living with unrelenting and profound stress at home can do the same. And just as some infants come out of their painful early years in Russian or Bosnian orphanages just fine, and some come out deeply damaged, parents come to special needs parenting with our own strengths and weaknesses. Some of us will bounce, and some of us will eventually shatter.

In the midst of the chaos of our home life,  we were condemned and criticized everywhere. I was patted on the head (once literally) and called a worried mom (many times, in many ways) when I told doctor after doctor after doctor that my child did not sleep, could not laugh, smashed his own face into the floor, and was not happy. I spent hours on the phone with the insurance company and got very little in return for my efforts because we just don’t cover developmental delay. I heard the questions again and again, searching for how Carter’s problems were my fault: did you take medicine, what do you feed him, were your other kids this way? I saw the nasty looks and heard the foul words from people at the grocery, the post office, and restaurants. We called for help and were added to waiting lists for tests, waiting lists for appointments, waiting lists for services.

I begged for help and heard, in a million ways and on a thousand days, no, we can’t help you. There’s nothing to be done. Go home. Deal with it.

I never devalued my son’s life. Our culture, society, and systems did that. When I waited on the playground for the kindergarten bell to ring and none of the other parents would talk to me because my son was “that boy,” the one who attacked other kids, couldn’t sit still, and occupied all of the class aide’s time and attention, I felt that shame, but it wasn’t mine. That shame belonged elsewhere—with  the principal, lawmakers, and supervisors who refused to provide appropriate placement. They devalued my son and my family. Doctors who saw me, frantic and pleading, for a standard 5-minute visit, and handed me a book about sleep instead of sitting and hearing me and working with me to find a solution—they devalued my son, my family, and me, but I felt the shame.

In the midst of all of that, with my life swirling in pieces around me, the dominant emotion was sorrow. My little boy was in agony. He was afraid, sick, psychotic, depressed, aggressive, suicidal, manic, and miserable. Even the most basic pleasures of life, a good night’s sleep or an easy poop, were denied him. I would have happily chewed off my arms if that would have eased any portion of his pain. I have held him through thousands of hours of sleepless anguish, pulled him back from the brink of his own attempts to hurt himself or end his own life, and watched a million hurts chip away at his heart. I would have done anything to fix it. I did everything I knew to do, and still, he suffered.

We lived like that for eight years. It changed me. It very nearly broke me. I didn’t get to the place where suicide and murder seemed like appropriate actions because I was selfish. I didn’t get there because of hate or even anger. The world was hopelessly dark, help far too scarce, and the shame too large. Most of all, the agony seemed endless, limitless. I have read over and over in the weeks since Kelli Stapleton tried to kill herself and her daughter, “A mother should protect her child!” Sometimes, I couldn’t see any way to protect Carter except to take him home to Jesus.

We have enough help now. Carter isn’t nearly as sick as he was, and my husband and I have more ability as caregivers than we used to. We survived long enough to get to the tops of some waiting lists, and we finally gained access to an excellent pediatric psychiatrist, a therapist, and a behavioral management specialist. We found a parent support group and a wonderful school that my parents have paid for. We began the process of turning our lives around, and while it hasn’t gotten easy, it has gotten manageable. There is joy again. My gratitude for Carter’s relative health and my family’s improvement runs deep like a river, but many families don’t get to experience the relief we have enjoyed in the past few years.

Violence perpetrated upon people with disabilities is a dark and ugly part of the human story, but I refuse to believe that we’re not capable of thinking around the corner and separating the cruel perpetrators from the desperate ones. Issy, Kelli, and the whole Stapleton family were left twisting in the wind. They had services, but they weren’t enough. When someone in a family is repeatedly aggressive, that means that family needs more help. When people in a family are repeatedly seen in the hospital for injuries sustained at the hands of a family member (Kelli sustained brain injuries when she was attacked by Issy), that family needs more help. When people are being bitten, scratched, and punched; when people are not able to stop biting, scratching and punching; when some children are hiding in closets dialing 911 (as one Stapleton child is said to have done); that family needs more help.

Silence and condemnation are not the solutions to those problems. The only solution to the problem of not enough help is more help.

We need a serious cultural shift in the way we think about family and caregiving in general, and caring for people with disabilities specifically. Even in the worst times, I was not a cruel or bad mom who hated my child; I was a desperate and isolated mom of a very sick child who I loved. We have to speak the truth, listen to each other, and insist that we all deserve better.

The NM Mental Health Care Audit: Out of the Frying Pan

The state of NM has yanked Medicaid and Medicare funding from fifteen agencies that provide mental health care services all across New Mexico. This represents 30,000 patients, many of them children, some of them the very sickest of the population of people with psychiatric illness.

I don’t use the word “yanked” accidentally or lightly. There was no warning; not for patients, not for providers, and not even for the administration and management of these agencies. The NM state government announced in June that it would halt funding to the agencies and hand over their administration to five Arizona agencies.

We’re flying our flag upside down. We’re on our knees, begging someone in power to come and save us. Our newspapers and media outlets, from Albuquerque to Taos to tiny Quay, NM, are suing our government, trying to force them to offer some transparency, some little hint of what has happened and where we’re going, and they are silent. New Mexico, like every state in the US, has its own auditor, but NM contracted with a Boston company to conduct the audit at a cost of $3.2 million. Why? We’ve heard no reports of corruption in the auditor’s office, so why did they do that? Were we just in the mood to send a whole lot of our money to Boston and Arizona and we needed to find a way to do that? Because for all the information we’ve been given, that makes about as much sense as anything.

The line we have heard again and again from the NM Human Services Department (HSD) has been that there will be no disruption of services. Even as the stories have begun to circulate indicating that the transition of management has been anything but smooth (and in some communities and families it has been disastrous), HSD has continued to assure us that all is well. Everything is fine.

I was on a conference call last week that was advertised as a “listening call” so that HSD and representatives of the Arizona agencies could hear consumer concerns. My alarm bells sounded right away, because contrary to the commonly held conception of people with mental illness, many patients do have jobs, and the meeting was held from 1:30 pm to 3:00 pm on a weekday, so that cuts one significant population of consumers out immediately. Next, the call was conducted in English, with no plans to conduct another meeting in Spanish or Navajo or with translation services available for speakers of other languages, removing many more people from potential participation. The announcement about the meeting went out via email, cutting out the many people in our state who don’t have access to a computer, and the fact that a phone was required for participation again removed a large group of people. Finally, many people who are very seriously ill just can’t. To expect a person with severe thought or mood disorder that isn’t under control to participate in such a call is laughable.

But maybe that’s part of how such a terrible thing is happening: its victims are a population that is less able to advocate for itself than many others.

To be blunt: everything is not fine, and every word spoken on that “listening” conference call by anyone who isn’t paid by HSD made that clear. There are children who are not in school because agencies that provided behavioral management services to children so they could attend school (commonly known as 1:1 services, and provided via Medicaid instead of the public schools in NM) don’t have them. There are families whose children are in foster care who can’t do the items on their family action plans because there are no providers to oversee and provide for those plans. The overflow from the agencies that are part of the audit is creating profound pressure on other agencies that receive public funding, so that service is reduced for nearly everyone across the state.

For perspective: I wrote A Dislocation of Mind, about the many weeks it took to get my daughter some psychiatric care in this state, over three months before the audit started. It’s not like the situation in mental health care and addiction treatment was good before this started; we’ve gone from abysmal to catastrophic. What I have detailed here are just a few hints to the horror that the audit is for the people on the ground: the patients and providers who live with the reality of mental illness and addiction every day of the year.

And yet, with all this, we’re having a very hard time getting any attention to this crisis. My friends, I’m asking you, please, if you live in NM, write to the governor and all our legislators and to HSD and insist that they put patients first. If there is money missing, certainly we need to find out where it went and what happened, but not at the expense of people who are sick. (By the way, does it seem unlikely to you that there is vast wrongdoing in mental health care but all the agencies that deal with broken bones, skin cancer, and the flu are pure as the driven snow? Yeah, me too.) The NM congressional delegation has asked US HHS Secretary Kathleen Sebelius to set up a public forum, but no date for that has been announced.

If you’re not in NM, please send a note to anyone you know in national media. No one seems to be all that interested, and I am no cynic, but it’s hard not to think that few people care because people with mental illness are a little weird and scary and not always likable (Just like the rest of us, but don’t people with mental illness make the handiest scapegoats?). We need the federal government to pay some attention to us, and my fingers and those of my advocate friends are about raw with all the letter writing.

Watch this.

Read this.

Watch this space for links to a radio series on the audit, which will include part of an interview I did with Tristan Ahtone, the public health reporter at Fronteras. If you’re in NM, you can listen to it on KUNM tomorrow during Morning Edition in the am and All Things Considered in the pm, or you can stream it if you’re not in NM.

This Is How We Dare

We dare because it is always OK to ask for what we need. Always.

You probably saw the hateful pink letter this week, the one addressed and delivered to the family of Max Begley of Ontario (If you haven’t read it, please use this link to read it. I don’t care to repost it here.). The social media outcry has been huge because the letter represents the worst of the attitudes to which people with disabilities are subject. People read that letter and were shocked; how could anyone suggest to a mother that her child be euthanized? A mother herself, no less? Who says that about a child?

And yet, I remember the time I was at the grocery and there was a man there who had Tourette’s syndrome or a similar disorder. Every few seconds, he vocalized loudly, and I heard a woman say under her breath, “Freaky retards should stay home.” In the meantime, my own son, eight at the time, was at home with his dad, flapping and swinging his way through an elaborate stereotypy that dominated his body for months.

There was the time Carter and I were at the post office and a stranger, observing Carter’s behavior, called him a brain-damaged brat.

Thousands of times, I have turned on the TV after a mass shooting or a celebrity meltdown to hear talking heads discuss the mentally ill and have resolved, again, to protect Carter from knowing that the words mental illness apply to him as long as I possibly can.

And then, there were the negative comments on my recent post Dear People Who Do Not Have a Child With Disabilities, almost all of which asked (demanded) some version of how dare you?

To sum up: some people want to know, how dare you ask the world to speak to you in a new way? They mean well; this is just the way life is! How dare you?

To sum up the anonymous letter sent to Max Begley’s family: how dare you inflict your son on the world?

To sum up the comment from the woman in the grocery: how dare he be out here in the world where there are other people who might see and hear him?

How dare we?

Why are parents of disabled children so incredibly self centered and self focused? They want everyone to bend over backwards to accommodate them and their kid. Don’t you know that EVERYONE has their battles? It’s not all about you, all the time! How often do you reach out to your friends to find out how they are doing? How often do you even know what is going on in anyone elses’ [sic] life except your own?

Asking for what we need is not an indication of self-centeredness or selfishness. Asking for what we need is healthy. 

Each of us, whether we have a child with a disability or a typical child, has our own set of issues to deal with on a daily basis. Some, admittedly, are more complex than others. But, again, I stress; you can either let all that is thrown at you drag you down and OWN YOU, or you can wrestle your life back and OWN IT. The choice remains yours.

Asking for what we need is not weakness. Asking for what we need is brave.

 Complaining about it and attacking those in society that make attempts to understand my situation by asking questions, or comments like the “What You Say…” is counterproductive. It only serves to make the situation worse and as so many have pointed out on this blog, who among us needs more to fret over and get upset about, not me.

Asking for what we need is not attacking others. Asking for what we need builds relationships.

Just don’t assume that ALL parents of disabled children or people with disabilities are that angry and negative all the time. Most of us get over it and get on with our lives.

Asking for what we need is not a sign of anger or negativity. Asking for what we need is proactive.

I also feel that if you can identify that a person is well-meaning, there is no need to make other assumptions about they are saying. Trying to be understanding is a two way street.

Asking for what we need doesn’t mean we think that other people are bad or wrong. Sharing information is sometimes part of asking for what we need.

All I got from this is that it is better to ignore or show no support to you or any mom with a child that has disabilities so that I don’t offend you or them. Isn’t it worth looking past the words that were said and appreciate the effort of support and even care towards you and your family. 

Asking for what we need is not criticism. Asking for what we need is an invitation to deeper relationship.

Sounds like you’d rather not talk to people who don’t have a child with disabilities. Shame on them for trying to be supportive or positive? Maybe they should just tell you, “Wow, it must suck to have a kid like that.” Maybe you could print out a list of things that are acceptable for them to say to you so you won’t be upset by them trying to say a nice thing and messing it up.

Asking for what we need is not shutting people out. Asking for what we need is a request for healthier community and an effort on our part to build that community.

So even if people are trying to be nice, it’s THEIR fault that YOU interpret their comments a different way than they were intended. So basically everyone should just shut up and not say anything because even the people who are being nice will still be villified [sic] in your mind.

Asking for what we need is neither hate nor vilification. Asking for what we need is an appeal to our common humanity.

 It comes across a little bitter.

Asking for what we need is not bitter. Asking for what we need is hopeful

I think it’s important to remember, though, that in MOST cases, these people are trying to be helpful.

Asking for what we need is not ignorance. Asking for what we need is about believing the best of people.

We dare to ask for what we and our loved ones need because people with disabilities are, first, people. We are humans who have lives to live. We need to go places and do things, just like you. We need sensitivity and kindness, just like everyone else.

We dare because it is always OK to ask for what we need. Always. Some people don’t want to meet our needs, and it is still good and healthy for us to ask.

Dear People Who Do Not Have a Child With Disabilities…

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.

I’m not speaking here of the jerks, the people who say things intended to be mean. Those people are heartless and lost and bummer for them because how sad, to live in a world that has so little kindness in it. I’m talking about ordinary people, the well-meaning man at the grocery store, the group of friendly acquaintances at church, and even the best friends who, when face-to-face with the parent of a child with disabilities, don’t know what to say.

If I sound at all bitter anywhere here, I apologize. I have no high-horse on which I may stand. I said some of these things before I became a parent of a child with disabilities.

Any bitterness that comes through is only a result of the incomplete job I have done so far in letting go of the anger and disappointment that engulfed me in Carter’s early years. If someone had told me these things before I had Carter, I would have tried very hard to listen and learn, and I know that when I said these things I meant no harm. In fact, I believed I was helping.

With those caveats in mind, here is a long list of things we parents of kids with mental/emotional/social issues hear often and that hurt us, and a much shorter list of things that I wish I had heard back in the years when life was all crisis, all the time.

What you said: God never gives us more than we can handle.

What we heard: You’re fine. Quit whining.

We’re not fine. Also, it is very dangerous to bring God into conversation with a person whose faith you don’t know intimately (and sometimes even then). We bring God to these conversations by bringing kindness. We bring God by seeing, hearing, and connecting.

What you said: He seems fine to me! Or, All kids do that!

What we heard: You are a very dramatic person and you should get over yourself. Also, you are very likely a huge liar.

If you said this to me now, I would raise my left eyebrow to you and make a mental note never to discuss anything related to Carter again. Back when I was in agony pretty much all the time, it was like being punched in the guts. It didn’t help that I heard it often. Carter was occasionally distracted from his incessant wailing by new surroundings, new faces, and especially fluorescent lighting. Plus, I rarely left the house unless he was at his best, so people heard my descriptions of a baby who cried hours and hours on end while said baby looked around from his perch in the sling in which I wore him.

Here is a good rule for all of us when we are talking to a person in pain: do not contradict. Even if the person you’re talking to seems to be completely full of crap, acknowledge the pain. See the person in front of you, because the person matters infinitely more than the facts, and this isn’t a courtroom. Even if I had been radically exaggerating the extent of Carter’s crying, I was in pain. Even if, as he got older, I was wildly overstating the rages, the migraines, the constipation, the sleep disorder, and the despondency of his depressions, my pain was real.

What you said: You must be a very special parent for God to give you such a special child.

What we heard: We are fundamentally different. I’m not even going to try to understand you.

When I first heard this, I would imagine God sitting at a school desk with a paper in front of him, just like the worksheets we used to get when we were in elementary school. There would be a list of babies on the left and a list of parents on the right. God would draw a line from the most difficult baby to the strongest parent, then second most difficult to second strongest, etc. In my imagination, a dog (God loves dogs) comes bounding into the misty, ephemeral scene, distracts God, and oops! God sent the wrong baby to those wacky Joneses!

There was an accident, and the accident broke Carter’s brain. I don’t know why, but I know I’m not special, and I need you to see and hear me and my struggle.

What you said: You are an angel! I could never do what you’re doing.

What we heard: Hey, sounds tough. What a bummer. It’s a good thing you can totally handle it and you don’t need anything from me!

Yes, you could handle it. The alternative is…what? It’s your kid. You handle it. Not with any grace or style (no points for those things, anyhow), but you just do. Ordinary you, ordinary me.

We aren’t different, we parents of special needs kids. I promise I’m just like you. I kick ass at some parts of parenting, and I’m lousy at other parts, and I’m very ordinary at most of it. You’d be horrified if you heard a group of parents of kids with issues like Carter’s talking amongst ourselves; we use gallows humor and and talk in ways we know would alienate you, and we are very un-angel-like. We are deeply angry sometimes. Wounded. Broken.

But if you come to us and say, hey, I’m in trouble, I have a kid with problems and I think I belong in your club, we will gather you into our circle so fast you won’t quite know what hit you. We will listen to you cry and we won’t tell you to stop. We won’t tell you to be strong because we know you are being exactly as strong as you can be. We know that your need is deep and that you can’t handle this, even as you are in the midst of handling it.

What you said: Every child is a blessing.

What we heard: Suck it up, buttercup!

First, duh! Of course my child is a blessing. I love him like fire. That does not invalidate my pain. In fact, my love is causing my pain because if I didn’t love him, why would I even care?

This is the Italy/Holland/Sudan problem. In 1987, Emily Perl Kingsley wrote an essay (which every parent of a child with disabilities is contractually obligated to receive in his or her inbox a minimum of 40 times in the year following initial diagnosis) comparing having a child to taking a trip to Italy. You’re planning this lovely vacation in Italy, and if your child has disabilities, it’s like accidentally going to Holland, and it’s very different and you’re disappointed, but hooray! It turns out Holland is fabulous!

Our plane landed in Sudan, and Carter and my husband and our other children and I are dodging bullets, rapists, and starvation, praying to escape with our lives. Windmills and tulips and charming sidewalk cafes sound damn good from here. I don’t owe it to anybody to put a smile on my face and pretend my blessings are different, but just as wonderful. Yes, there are some things about Carter’s illness that have made me a better person, but I would trade it all in an instant if it meant that Carter could have his brain intact and my other children could have had a childhood that didn’t include all the crises that their brother brought with him into the world.

What you said: Your faith will get your through! Or, God doesn’t bring us to it unless he plans to bring us through it! Or, With God all things are possible!

What we heard: You’re only having trouble because your faith is crappy and weak.

Here’s the deal: my faith did get me through, or rather, God did. I was more broken by the time Carter had his second birthday than I have ever revealed publicly, and I spent long, wakeful nights in the manner that is familiar to millions of people of faith: on my knees, the holy book of my tradition open in front of me, begging God for relief for me and my family and healing for my child. I told God that if we couldn’t have relief and healing, that I would very much like a carbon monoxide leak to take us all quietly in our sleep, and if that could be arranged while Jacob and Abbie were at their dad’s and Spencer was with his mom, then that would be infinitely preferable.

I am 90% convinced that if the house we lived in at that time had a garage, I wouldn’t be writing this to you now. The presence of God in the universe doesn’t let people of faith off the hook and platitudes like this don’t help anyone except the person who says them. Glib sayings about faith are all well and good when life is swell and the sun is shining. People who are suffering need something more substantial. If you are a person of faith, we need you to live that faith by caring for us and hearing how we’re struggling.

What you asked: Did you take medicine while you were pregnant?

What we heard: How did you cause this?

This was a question someone asked me while Carter was a toddler, screaming and fretting through his second year of life. What I know now is, when people ask me questions designed to figure out how I caused Carter’s various disabilities and issues, they are really saying, this would never happen to me. And while I want to reassure you that it probably won’t happen to you, it could. Yes, you. You, who give money to charity and always wear your seatbelt and feed your family organic foods and are a very nice person who never kicked a puppy. I know that it is very, very painful to live in a world of uncertainty and fear because I live on a cliff every minute, but there are no guarantees in this life. We don’t have (will never have) answers to questions like why this childWhy our family? There are no answers to those questions, or at least none to which we have access during this lifetime.

There are dozens of variations of this question, all of them probing for a cause, seeking to lay blame on the feet of that traditional whipping post, dear old mom. When he was a baby, my friends who practiced natural and attachment parenting thought I wasn’t doing natural and attachment parenting hard enough (A baby whose needs are met won’t cry! Pfffffffft. Suck it, Dr. Sears.). My friends who practiced more conventional parenting thought I was spoiling Carter by nursing and carrying him so much. No matter which way I turned, someone assumed it was my fault, as if I wasn’t already trapped in a giant web of self-doubt and recrimination. I tried to give him away to foster care (Thank God Brian stopped me because I really do love that kid.) because I was sure he needed a better mother.

As he got older, people gave me books about discipline and my father-in-law offered to take Carter for two weeks to make him shape up. Do not succumb to this temptation. Ordinary, fallible parents do not cause serious disabilities in their children. We have not traumatized them into their problems by being human. Resist the impulse to make assumptions about a child’s parents based on that child’s behavior.

The world is uncertain and sometimes horrible, even here in middle class America where the grocery stores overflow with food and the roads are paved and talk radio churns its way ever forward. Crappy things happen to perfectly ordinary people, and most of the time there is no one and nothing to blame. It’s lousy and it feels horribly unfair; nevertheless, it’s the truth.

One note underlies all of these statements, and it is this: Please be quiet. You don’t mean to say that, but platitudes are conversation stoppers, and when we hear them, we hear you begging us, please don’t show me this anguish because I can’t bear it. I don’t know what to do and if you would be quiet I would be much more comfortable. I’m telling you this because I think most people don’t want to be saying that, but what is there to do? A friend (or family member, or acquaintance, or stranger) is in pain, and what am I to do? I don’t understand this. It’s scary. It’s weird. It’s so other you might as well be beaming me a message from Planet Zergon.

I’m going to tell you. Here is your map.

  • Listen. Just listen. Open yourself up. Yes, it hurts and it’s very scary. That’s OK. There is a person in front of you who is in pain. Don’t leave her alone with it.
  • Know that you can’t fix it. Don’t try. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link.
  •  Acknowledge and affirm. Say, wow, that sounds hard. Say, oh, my God, how painful! Say, I hate that it’s so difficult for you.
  • Treat our kids the same way you treat other children in your life. Of course you should be sensitive, especially with kids who have emotional/social/behavioral issues, because many of them don’t want to be touched or may not be verbal, but in general, if you usually engage kids in conversation, do that with our kids too. Say hello. Smile. They might not respond predictably, if they respond at all, but they see you. 
  • Offer to help, but only if you mean it (people in pain are sensitive; we know when you’re saying words you don’t mean so you can feel good about yourself). My mom sometimes came to my house and gathered all my laundry baskets and every scrap of dirty laundry in the house (which completely filled the trunk of her car) and brought it all back a day or two later, clean and folded. Our friends from church occasionally brought us meals. A friend drove Carter and me to some of his appointments during the worst months because I didn’t feel safe driving alone with him. Those things meant the world to me. As much as I appreciated the clean clothes, meals, and rides, I was even more grateful to feel a little less alone in the world.
  • Send a note, a text, or an email. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival. Stay connected, even if it feels one-sided.
  • If you’re very close, spend a little time learning about your friend’s child’s diagnosis. There is no need to become an expert, but an evening spent learning will only make you a better listener. If you don’t know what to read, your friend will gladly tell you. 
  • Keep listening. Just show up and listen. There’s nothing any person in pain needs more. 

BlogHer Surprise, or How I Misunderstood Almost Everything

BlogHer 2013, one of the most eventful weekends of my life, presented in 1600 words and 10 pictures. “Just the facts, ma’am,” as the saying is.

I almost never write about blogging/writing because I know that most of my readers aren’t bloggers or writers, but I really wanted to tell you this story. If you are one of those non-blogging readers, a bit of background: BlogHer is a social media company that does all kinds of things (and maybe everything), including hosting several conferences. Their flagship event is a blogging conference every summer, and it is mammoth, one of the largest social media gatherings in the world. Last weekend I flew to Chicago and attended their 9th annual conference.

My language for the past few months has gone something like this: Yes, I’m going to BlogHer, but it’s not quite the right conference for me. BlogHer is really for blogger bloggers, the ones who work with brands and write reviews and all that, and I’m not that kind of writer. I’m going to meet my friends and next year I’ll find a conference that suits me better.

Ahem.

I was wrong.

Wrong, wrong, wrong.

Yes, BlogHer conferences do connect bloggers with brands (I am in no way critical of that; it just isn’t my aim right now, and besides, I’m pretty sure I misunderstood exactly how that works, too), but there is so much more. I met people—hundreds and hundreds of them—who are brilliant, funny, creative, energetic, talented, and fierce. I talked with knock-you-out writers and change-the-world activists. I heard talks by Guy Kawasaki (Read his book Enchantment today.) and Sheryl Sandberg (Read her book Lean In the very instant you finish Kawasaki’s book.). I talked and talked and talked (and talked) and heard stories that had me alternately laughing until my guts ached and scrambling in my bag for tissues.

Of course, some of the emotionality is just about exhaustion (4-5 hours of sleep a night 3 nights in a row? I’m way too old for that shit.), but most of it is about the energy of the people and the being-togetherness. I am every bit as close and connected to some of my online friends as I am to my local friends, and to be together in the same place for the first time is a powerful thing.

Case in point:

That’s Jen, also known as @TheNextMartha, but for me, she’ll always be my Internet Fairy Godmother. She came to the airport to meet me and share a cab to the airport, and it was so fitting, since she was my very first internet friend, way back when we both had fewer than 100 Twitter followers (You know, back in the day. 2009, I believe.).

Then there’s this one:

Can I just say, photography is kind of a big deal in the blogosphere, and we are probably a very rare pair of bloggers in that neither of us can take a photo to save our lives. But that’s Alex, my hero, my Wonder Woman, the Southeastern US version of Southwestern US me (It probably says bad things about me that I admire her so much since we’re so similar.). We roomed together, and the first night we decided to hit it early because we were both tired, and proceeded to flap our gums until after 1 am. I could have kept talking with her for days and never gotten bored.

I never took a picture with Katie, which was seriously stupid (see above about how I am photographically challenged; not only am I bad at taking pictures, but also bad at remembering even to try) because I love her like wildfire, but I squeezed her no less than 15 times, and maybe sometime I’ll edit a couple of photos of us to make it look like we’re together.

I spent some time with Abigail:

I have loved her like a younger sister for a long time, but did I recognize her when I met her? No, I did not (I plead exhaustion.). Did she hold it against me? Not a bit. She even let me play with her baby later in the day. (Cute? Oh, yes. Painfully cute.)

We laughed and laughed at lunch. I was holding that baby over there on the right and I was laughing so hard I had to pass him back because I was afraid I would bonk his head on the table.

I met new people, so many new people, and thank goodness they were all passing out business cards because my head was swimming after the first hour. For a person whose work life is spent at a desk in a little office next to the kitchen, with music and occasionally (OK, maybe more than occasionally) MSNBC to keep her company, that was a whole lot of people. An avalanche of humanity. I met a tiny fraction of the people in attendance, and still, it was more faces and voices than I can possibly keep track of.

These are not new people. These are people who’ve been blowing my mind with their words for years. If it seems like I was a little starstruck, it’s only because I was. From left to right, me, Varda, Michelle, Jean (Stimey), Jennifer, and Mir. If there is a brawl in an alley, these are probably the women who started it. Don’t let their beauty fool you; they are badass in the extreme.

The highlight of my weekend was Voices of the Year, which is the big event on Friday night every year at BlogHer. Nominations for blog posts open every spring, and the BlogHer team of readers chooses 100 posts to honor, and from among those, they choose 12 and invite those writers to read them onstage. When I got the email inviting me to read A Dislocation of Mind I was honored, but I had no idea what it really meant.

This is the space at the Chicago Sheraton where they had Voices of the Year, before the people came. It’s hard to tell because of my lousy photography skills, but I think the room had a capacity of something like a half a million people. (Perhaps a little less? Who can tell.)

We twelve readers, plus hosts, were tucked into a backstage space to await the beginning of the show. I peeked out around the curtain from the far side of the room and snapped this not too long before we started, in between two of my half dozen trips to the bathroom to stress-pee.

Whoa. No less amazing than the audience were the other writers. I took this backstage, when Lisa StoneElisa Camahort Page and Jory Des Jardins (BlogHer co-founders) were introducing the evening’s emcee.

I wish I’d managed to get a picture with all the readers in it. In between trips to the bathroom, I kept thinking, “I could sit at a table with these women and we wouldn’t run out of things to talk about for months.” The intelligence, passion, and hilarity among them is epic.

Oh, and the emcee?

Yes, that’s Queen Latifah, who liked my triskele tattoo and who is even more beautiful and gracious in person than she is on screen.

I managed to take the stage without falling down, and then there was magic. I’ve made the joke a thousand times: there are few things I like more than an audience. Ask my mom and she’ll tell you that from the instant I figured out how to use my mouth to form words, no one has been able to get me to shut up. But this? This was something different. Extraordinary. People told me that they really enjoyed it, but I have a hard time imagining that anyone was having a better time than I was. To have people hear my words, to understand my daughter’s story, gives me real hope. Many people don’t get what’s happening with mental health in our country, but here was a group of powerful, passionate people, many of whom have their own experience of mental illness and the mental health system, who care.

And then I went backstage and my phone exploded with encouraging, celebratory tweets, and I won’t lie. That was fun. When BlogHer posts the event on YouTube, I’ll link to it because if you weren’t there you’ll want to watch the whole thing. It will blow your mind, from laughing about intestinal worms to weeping over the injustice of poverty to raging because the Christian church is so often outrageously un-Christ-like, and so much more.

BlogHer had one of these boards made for each of the 100 winning Voices of the Year posts, and the reception room after the event was gorgeous, filled up with all those words. Alas, I couldn’t figure out how to get mine home on Southwest Airlines.

On Saturday afternoon, I spoke on a panel with Alex Iwashyna and Cora Harrington called Blogging the Unbloggable: Writing About Hard Topics Without Being Hated. I hope the people who attended the session enjoyed it, and maybe even learned something, because for me it was important. In preparing for the panel I had to really examine myself and my blog, and I’m asking some questions, namely, why am I taking so few risks? I don’t know the answers, but I don’t think it’s a bell I’ll be able to un-ring.

I kind of hate uncomfortable, un-ringable bells.

But what the hell, right? A life without surprises and risks is hardly worth the effort. I came home with a new understanding of the power and limitations of this medium and I’m excited to find out what will happen next.

Next week, I mean. After I sleep. A lot.