An Eternal Multitude of Despondency

Instead of letting me go in an ambulance, my parents drove all the way from Albuquerque, New Mexico to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

Instead of letting me go in an ambulance, my parents drove from Albuquerque to Prescott, Arizona to take me from the tiny regional medical center where I had been for nine days to the much larger hospital in Phoenix.

When they arrived to collect me, I was furious because I was not dead yet, and I was furious at my parents because one time they had wanted to have a baby, and that baby was me. Horrible, miserable, disappointing, useless me.

Somewhere at the back of my skull where depression had driven my better self, I could hear a murmur of words that said, ssssh, be nice. They love you. This is hard for them.

My parents drove me from the hospital to the house where I had been living and gathered my things. We filled my suitcases with the paperback novels I read until I’d gotten too sick to do anything but stare at Green Acres and Make Room for Daddy on Nick at Nite while I sharpened and re-sharpened every knife in the house. My mom put my hamper in the minivan last, telling me she’d do my laundry and bring the clothes to me at the hospital.

I was in the middle seat of our Volkswagen Vanagon while my mom drove the steep, twisting roads out of the mountains and into the pestilential heat of Phoenix. We paused for a funeral procession and I looked at the hearse and I hated its dead passenger with a hot red rage because how dare that asshole get a chance to die when I could not have mine? How could the universe force me to continue to draw breath when so many were allowed to make their escape?

Something broke behind my face, and I don’t know if it was sitting in that seat in the van where I had sat so often as a child, or if it was the presence of my parents (who on that day I hated and loved in equal degree), or if the little green and white capsules (“This drug is so new you’ll always be able to tell people you were one of the first to take it!” chirped the psychiatrist who prescribed it, as if I didn’t have every intention of dying before I ever told anyone anything ever again.) were chiseling away at the deadness in me, but I cried.

I laid down on the brown van seat and bawled. I used up all the tissues in the car, and then the roll of paper towels my parents always carry when they travel. Finally, I crawled into the back to find one of the little travel blankets my mom made when I was twelve and I cried into it and there seemed no end to the tears and snot and suffocating misery. There was no relief in those tears, no purifying release, just more: an eternal multitude of despondency.

My mom parked the car and my dad opened the sliding door. He unbuckled my seatbelt and I walked under his arm, my face covered, and he guided me until I was in a chair in an office with a woman who asked questions. I hated that woman, this intrusive, bossy crab who wanted me to answer her stupid question and sign her ridiculous papers. “I’m sorry, Mr and Mrs Jones, but she’s 18. She has to answer herself,” and she was just another prying, arrogant ass who wanted to stop me from checking the fuck out of this life.

We walked again, me still under my dad’s arm, my swollen, soggy face hidden, and there was a loud clunk and I was seated in a new chair. I cried on. My face was as hot and raw as a knee that has been skinned on pavement after a bad spill from a bicycle, and still I cried on. I leaned into my dad while someone put a tourniquet on my arm and drew blood  and someone said, “Excuse me. I need to use the phone.”

I looked up. In front of me, a blonde woman no bigger than a ten-year-old wearing jeans and a housecoat, and behind her, across the room, a mustard-yellow steel door. “We’re here? We’re already here?” I asked, panicked. I was locked in.

“You gonna move or what?” asked housecoat woman, and my mom guided me to a different chair so I wasn’t sitting in front of the row of pay phones on the wall.

“Can’t I come to the hotel with you guys?” I asked my parents. “Just for tonight. I’ll come back tomorrow. I promise! Just take me with you for one night, please? I won’t do anything. I promise. I really promise.”

My dad squeezed my hand. “We have to go now. You need to stay here but we’ll come visit tomorrow.” They each hugged me and I don’t know if I hugged them back.

That night, a nurse gave me a Benadryl to help me sleep and my insomnia snickered at that drug and I spent the night sitting in the day room with my 1:1 aide (the person charged with staring at me every minute lest I find some way to hurt myself in this bladeless, beltless, edgeless, glassless place). The aide lit my cigarettes one after another after another while I stared at the console television with its familiar succession of elderly shows on Nick at Nite. She asked me questions as if I was a child she was humoring at a friend’s party: Do you have any sisters or brothers? Do you like dogs? What was your favorite subject in school? I did not scream at her shut up shut up shutupshutupshutup and eventually she opened one of the magazines in her lap and seemed to be reading it.

The days were long, punctuated by meals we ate in the smoky day room and the counting of returned plastic cutlery after. There was a tray of graham crackers and apple juice from which we could snack between meals, and down the long main hall was a man who was either bedridden or in restraints who screamed curse words at the staff all day until evening when they gave him medicine that made him sleep and we, patients and staff alike, breathed a collective sigh of relief. On the rare occasion I was able to sleep, my roommate woke me to share the triumphant news of her successful vanquishment of ceiling demons. “They would have eaten everyone,” she told me, and I wished she would let them.

My parents drove to Prescott to pick up my car, then my dad drove home in our van while my mom stayed on in Phoenix for a few days. She brought me my clean clothes. She had gotten all the blood off the left leg of my khaki pants and I wished she’d just thrown them away but maybe she needed to scrub and scrub and scrub until it was gone. She couldn’t scrub my hand the way she’d scrubbed the pants and I poked and pulled on the wounds there but they didn’t hurt much anymore.

I was relentlessly cajoled. I was running a low fever and my blood work showed I was dehydrated so the staff brought me cup after cup of soda, tea, and water that I would not drink. They threatened that I would not be allowed off the unit if I didn’t eat but all the food tasted like sand. All the drinks felt like glass in my mouth. I sat in a chair in the day room and listened to my thoughts pummel me and I hoped I would die in my sleep and I smoked my cigarettes and when they brought that green and white pill in a tiny paper cup I swallowed it.

There was a doctor with an accent so thick I couldn’t understand more than about half of what he said. He began to give me diagnoses, one after another, stacking and shuffling them, as if hanging enough words and codes on my emotional reality would cause a spontaneous healing. “Please just give me some medicine to make me sleep,” I said.

“You already have catatonic signs and symptoms,” he said. “A sedative will only make you worse. Don’t worry; when you are tired enough, your body will sleep.”

I shuffled out of his office and my aide took me back down the mustard-yellow hall, through the mustard-yellow door, and seated me in a mustard-yellow chair. She lit my cigarettes until shift change when someone new came to light my cigarettes. I sat sleepless through that night and the next day the doctor said, “You’re a really tough case. You’ll probably need to be in the hospital for a very long time.”

“Please just give me some sleep medicine,” I said, and he refused.

“You’re a tough case for sure,” he said again.

One night, the charge nurse took me to the courtyard with her. She lit a cigarette for me and one for herself and said, “I hear you want to die. Why would you want that? You’re young and pretty and you have everything going for you! I wish I could be young again. I wouldn’t waste it in a place like this.”

I smoked my cigarette and held my beltless robe closed and I did not scream at her shut up shut up shutupshutupshutup. I could not understand why no one but me could see that I was already dead and it was only my stupid body that was keeping me trapped like a ghost among living people.

The nurses told me when to shower and I dutifully soaped and rinsed, my aide watching all the time while the water screamed insults and threats at me. I got out of the shower and lay in a soggy, naked heap on the bed, overwhelmed and unable to decide what clothes to wear. The aide sighed and brought me clean underwear and socks, then put two hospital gowns on me, one open at the back and the other open at the front.

I shuffled back to the day room and smoked cigarettes while the other patients swirled around me, interacting with their hallucinations, arguing over the TV channel, demanding drugs or food or freedom from nurses, aides, and other patients. The man down the long hall howled, hurling his familiar insults in his familiar way and I hoped that soon he would get his haldol or thorazine or whatever they gave to shut him up.

A nurse brought me a cup of orange soda and set it down next to my ashtray. “Drink this,” she said. “Eventually we’ll have to give you an IV if you don’t drink something. How do you think your parents would like that? How can you do this to them? Maybe I’ll take your cigarettes away until you drink something. Maybe I’ll even take your cigarettes away until you speak. Would you like that? No cigarettes as long as you keep sitting there like a statue?”

“Fuck you,” I said.

She looked slapped. “Fine. Drink your soda so I don’t have to call the doctor again.”

“Fuck you,” I repeated.

The nurse walked away. The aide looked at me over her newspaper and chuckled a little. “You might get well after all,” she said.

I drank the soda.

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.

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. 

Inarticulate Screaming

In recent lawsuits, mental health care in prisons in four US states was described variously as “clearly inadequate,” “[not] even rudimentary,” and “grossly inadequate.”

At The Atlantic, writer Andrew Cohen visits (as he has so often in the past) the state of the lives of people with mental illness in the US prison system. In his piece One of the Darkest Periods in the History of American Prisons, published yesterday, Cohen describes four lawsuits filed in the past 3 weeks against prisons in 4 US states: Florida, Mississippi, Pennsylvania, and Louisiana.

I would tell you how I feel when I read Andrew Cohen’s pieces about what life is like for incarcerated people with mental illness, but how do I communicate inarticulate terrified screaming via text on a screen?

The actions and neglect alleged by the lawsuits are almost too terrible to comprehend, and in some cases would be sufficient to cause thought and mood disturbance in most mentally and emotionally stable adults. They cite cases of abuse of solitary confinement for months or years at a time; lack of protection from violence, particularly sexual assault; and excessive force by prison guards.

Mental health care in the prisons was described variously as “clearly inadequate,” “[not] even rudimentary,” and “grossly inadequate.” In discussing the ways in which the abuse of solitary confinement and inadequate staff  make a horrific situation for mentally ill inmates even more dire, Cohen writes:

The federal report [filed by the Civil Rights Division of the Justice Department] describes a prison [in Pennsylvania] in which mentally ill prisoners are locked away so thoroughly that what few mental health professionals are available are unlikely to see the very inmates who need the most care. And what are such rare visits like when they occur? “Cell-side visits at Cresson [Prison] involve mental health staff standing outside prisoner cell[s] attempting to speak to the prisoners through cracks in door frames or food tray slots, amid the commotion of the unit.”

The results of these living conditions and inadequate (or absent) health care are predictable: suicide attempts and suicide completions; self-harm; homicide; decompensation. Cohen describes inmates with profound mental illness who have lived without treatment for years, even decades, and who will soon be eligible for release. Mental illnesses are not static. In most cases, they are progressive without appropriate treatment. When we lock sick people up, if we don’t treat them, we release much sicker people two or 10 or 30 years later.

And yet…did you know? Are you aware? The largest mental health care provider in the US is the LA County Jail. There is so little care available for people with mental illness that, ultimately, they get care (or not) in a a jail or prison, if they survive that long. If psychiatric care is not available in our communities, on our street corners, next to the offices where we have our kids immunized and our bronchitis diagnosed, if there are no beds in the hospitals for people facing serious psychiatric illness, do we assume those very sick people will all go home and be sick where we will not see them? Or see the error of their ways and just quit being sick?

Of course, many will go away. Some will take their own lives and we can comfortably view those deaths as family tragedies rather than the social failures many of them are; some will live life on the streets or in shelters as triple victims of their illnesses, the system, and the violence that is so prevalent on the streets; and some portion of people will become so ill, or have so many other confounding factors (cognitive impairment, little or no family support, homelessness, bad luck) that they will enter the criminal justice system.

Once they are locked up, we might treat them better than the abandoned pets in animal control shelters all over the country, but we might not. It depends on where an inmate is, and what his or her state has invested in treatment for prisoners, and a thousand other variables, down to whether or not the guard in charge of a prisoner on any given night “believes in” mental illness.

This is why, among the predictable bogeymen living under my bed—the possible horrors Carter may experience, from the likely to the remotely possible—incarceration is among those with the biggest, ugliest teeth. Sadly, the deck is stacked against him. His illness disturbs and distorts his thinking, makes him paranoid, aggressive, and sometimes seriously (frighteningly) weird. For now, I can compel him to accept treatment (and he wants that treatment), but the storms of adolescence and early adulthood are coming. For too many people with serious mental illness, normal teenage rebellion becomes treatment refusal, a “right” that we protect, which leads to more serious illness, which leads to the cycle of incarceration-shelter-streets-incarceration that is the undoing, and often the end, of far too many seriously mentally ill people.

You will never hear me make the argument that mental illness excuses any crime, but you will also never hear me make the argument that we do not hold in our collective hands a duty to care. We have a duty to see our incarcerated citizens as human beings, not necessarily because they always act like humans (I am not so idealistic that I don’t know the horrors people sometimes visit on each other.) but because we are.