Letting it all hang out 

I spoke with Jesse’s fourth grade class today about her OCD and anxiety disorder, her treatment plan, and the meaning of life.

Well… maybe not so much that last part.

Bear with me as I travel a long and winding road to telling you how it went, and let me put the punch line here in case you don’t make it to the end of this blather fest: SPEAK. If you are suffering, speak. Not just out of need and selfishness, but also as a gift to those who love you and share your world, and as an offering to others who suffer like you. Speak, so that they understand you better, so that you aren’t alone. Speak, to break the cycle of silence.

 * * * * * * *

I’ve become rigid in my belief that silence, sidled up alongside a false sense of the need for privacy, is a wellness-killer with respect to mental illness. But if I pay attention, all the messages I’m receiving tell me I’m totally wrong. Privacy and secrecy are the gold standard. Talking about this stuff remains taboo.

A couple months ago, Jesse agreed to be part of a story on childhood issues in an edition of Milwaukee Magazine dedicated to mental health issues. The writer asked me up front: do you want me to change your names?

Why? I asked.

He said something about privacy. I had my answer ready; I had already discussed it with Anthony and Jesse. We’re agreeing to be part of this story to fight stigma, to demonstrate courage for and with our suffering child. How can I tell Jesse I’m not ashamed of her, and how can I teach her not to be ashamed, if we hide her behind a fake name?

I thought it was a done deal until he called me back a few weeks later. He wanted to make sure I was okay with using Jesse’s real name. Yes, I answered. Yes, I have her permission and therefore yes, you have my permission. Remember what I said about stigma?

It was a pleasant, albeit redundant, conversation.

I thought it was a done deal again until the magazine’s editor called me a few days later. He wanted to make sure I was okay with using Jesse’s real name. I repeated myself. He said the lawyers insisted he make sure.

I started to feel a rise of anxiety. “Is there a reason you keep asking the same question? Am I giving you the wrong answer? Is CPS going to come after me for using Jesse’s real name?” No no, he assured me, just making sure.

But all the same, he asked me to send him an email confirming my decision, per the lawyers’ request.

 * * * * * * *

It seems to me that mental health institutions and professionals also encourage a sort of fetish for secrecy. When we were investigating enrolling Jesse in the Rogers outpatient program, we weren’t even allowed to visit the space to see how things operate. Privacy issues for current patients, they said.

On the first day we arrived at the facility — what do I call it? A clinic, a building, an outpatient facility, an institution?  Whatever I choose, it better be euphemistic. God forbid a mental health facility’s signs should actually say something about “mental health” so that I know I’m in the correct place. (I’d actually prefer something along the lines of, “CRAZY NATION, ENTER HERE.” Very clear, and laughing is good therapy, after all.)

Right, so on the first day, we had to sign a massive fine-print document regarding privacy. It read like a national secrets act agreement. I hope they won’t send me to mental-health-industry-Gitmo, and I hope they won’t kick Jesse out of the program, if I happen to write something here that’s considered a violation of one of the 800 non-disclosure provisions in that agreement.

If I weren’t a smug, grumpy, maladjusted human being who ignores social cues, I think all this input would be teaching me that I must seek privacy, that I must hide my family’s dirty little crazy secrets. Tell me about your cancer and your broken bones and your diabetes and your heart disease, but don’t lay your brain problems on me. That’s just… ew.

 * * * * * * *

Jesse has been on shortened days all year at school, but it’s even more truncated now that she’s in this intense OCD/anxiety outpatient program. She only goes to school from 8 to 11, plus she missed almost a full week of school for our intro week at Rogers. Not to mention that she’s been pretty wack-a-doodles all year long. A few weeks ago I started to think Jesse’s classmates might deserve to to be offered a little insight.

I suggested gently to Jesse one day that I could speak with her class about her diagnoses and what’s going on, kind of educate them a little. Jesse didn’t hesitate. “Yeah, that would be great,” she nodded. “They already know about all my inappropriate behaviors, because they see them all the time.”

Good point. Jesse appears to be following my lead in letting it all hang out. I love this girl.

 * * * * * * *

Despite the battle-ax I carry about openness, I was surprised to find that a concrete plan to talk with Jesse’s classmates about her disease unsettled me. I didn’t want to tell them what’s wrong with her. Still, we scheduled the visit for this morning and I crossed yet another little bridge in Jesse’s mental health journey.

I procrastinated vigorously and waited until last night to start preparing. I guess I thought I’d be able to google up something. Surely, some English speaker somewhere on Earth must have done a little presentation to kids about OCD and generalized anxiety, and posted it up on the web for a bum like me to plagiarize.

But no.

Maybe my bad attitude made my search mojo go wrong. In any case, I eventually had to come up with my own little outline and get on with business.

I walked into Jesse’s classroom this morning feeling anxious and fussy, even though I know this particular group of kids pretty well. I visit every couple weeks to do an “Art for Youth” presentation/project with them, and I’ve been on a few field trips. We’re pals, and they’re great about engaging with me and speaking up.

I won’t give you too many nitty gritties about what I blabbed about, but I guess I should record the big strokes.

I likened mental illnesses to other diseases of the body. We used diabetes as the analog. It’s a lifelong condition; kids have a harder time staying in control than more experienced adults; and over time you learn with diligence and hard work how to manage it and stay healthy.

We talked about what anxiety feels like. The kids did a great job of cataloging the ways it makes your body and brain feel really bad. And then I asked them to imagine feeling like that every day, all the time.

I showed the kids Jesse’s drawing of what her anxiety looks like:

IMG_1895

Yes, his name is Shock Lord. He’s a boy. Shock Lord’s arms are made of lightning, and his hair is a cloud filled with lightning. He is Shock Lord because he SHOCKS Jesse all the time. Jesse has explained to me (and I told the kids) that his eyes have been cursed to see things wrong. If he sees a small hill to climb, he thinks it’s a dangerous mountain. If he sees someone walking toward Jesse whom he doesn’t recognize, he thinks the person has knives and guns and wants to kill her. I explained how these fears can fill Jesse’s mind and blind her to what’s going on around her, so that she might appear to ignore a smile and a friendly hello from a friend.

I started seeing light bulbs go on.

We talked about what it means to suffer from Jesse’s style of obsessive thinking — to believe that the intrusive negative thoughts that percolate into your mind, unbidden, are significant and prove that you’re a terrible person. I likened the obsessive process to being trapped in a small cage with a giant TV on one wall, blaring at maximum volume on a station that only shows you things that scare you the most. You don’t have a remote control and you can’t close your eyes.

More light bulbs.

We talked about what compulsions are like — the feeling Jesse experiences, as if heavy rocks are pressing on her heart, and it doesn’t stop unless she lets out the blurted words or engages in the inappropriate behaviors. I showed them her drawing of the compulsive piece of her personality.

It is named, inexplicably, Ricket.

IMG_1896

Ricket is a dog-like creature and sister to Shock Lord. She was misled by a Sith-like character long ago (coincidentally, on Jesse’s birthday) into believing that the things she makes Jesse do are good for people, or maybe will protect Jesse. The claw over her head grabs taboo words and behaviors from around her. Ricket’s brain cavity grew into that large wiggly square shape to absorb the claw. Ricket’s pincer tail holds the blurted words to throw them out into the world.

Huh.

The kids soaked it in. Totally fascinated. Light bulbs left and right.

We talked about what Jesse’s inappropriate behaviors and offensive word blurts “mean.” I said they don’t have a moral meaning — she’s not trying to hurt you or offend you. In fact, she’s ashamed of the behavior; she hates herself for it. So what her behaviors mean is simply this: she is suffering from a mental illness that grownups still haven’t figured out how to treat effectively.

We talked about treatment. Medication to help with the anxiety, along with relaxation and cognitive interventions. I explained how exposure therapy works for the OCD — making her hear and see things that make her anxious, and then making her control her behaviors. I showed them what her competing response looks like. They were shocked, a little freaked out that we would do this to her. I explained habituation. They remained skeptical and expressed an almost protective instinct toward Jesse.

We talked about what the kids could do to help Jesse. This was easy, because they already do it. Most of these kids model great behavior. They’re kind and patient. They encourage Jesse to keep trying. They ignore her when she acts up. They never forget that she’s an ordinary kid under there, just like them.

And in the course of this boring tittle-tattle, these extraordinary human beings (nurtured and led by an extraordinary teacher) became bathed in shining haloes as their comments and questions came at me.

* * * * * * *

Many of their questions reflected a deep compassion, bordering on fear, for Jesse. Will she always have to feel like this? Can her OCD ever go away? Can she get rid of it? One little girl wept.

Some kids seemed to just want her to be in school more. One little fellow repeated back to me her schedule at Rogers, which goes Monday through Thursday. “What does she do on Friday?” he wanted to know. “I hope she’ll be at school,” I answered.

Several kids wisely focused on her anxiety levels. A conversation developed naturally about when she’s least anxious — when she’s drawing, everyone agreed, or playing basketball. They wanted to know what helps her. I was blown away by the practical implications of this — they were searching for ways to guide her.

Stories were shared about Jesse being bullied on the playground. It took me aback, because Jesse doesn’t tell about that stuff. Some kids from another class were kicking and pushing her away one day. Some kids said no to her. A group of boys teased her and asked her to chase them, then made fun of her. Jesse’s own classmates regaled me with stories about how they stood up for her and invited her to play with them. They told me that their teacher taught them their class is a family, so they stick together and they stick up for each other. I made my hands into a heart shape and mimed it beating on the left side of my chest. I couldn’t speak words or I would have cried.

Even now I have no words. You had to be sitting among these little people. The humanity, the compassion, the practical comprehension that overtook them when they were given the chance to understand why Jesse is the way she is right now — it was something glorious and profound.

At the end of our chat, Jesse joined us. She walked in shyly and sat on my lap, and she took questions from the class.

Which in itself is an extraordinary feat. Courage! I would have fallen over in a swoon if she wasn’t squashing my legs with her bony bottom.

The kids peppered her with questions, wise and silly, gentle and diplomatic. Do you like Ricket? Who do you like better, Ricket or Shock Lord? What’s your anxiety level right now? What things do you like to do that help your anxiety be lower?

Interspersed with the questions were the helping hands. Jesse, don’t let Shock Lord tell you bad things, said one sweet boy who spoke with a quiet sense of urgency. Don’t listen to him. A little girl spoke up. I’ll always play with you at recess, Jesse. If anyone says no to you or teases you, you can always find me. A boy chimed in. You can play basketball with me any time, Jesse. I’ll always say yes. The kids started riffing about Jesse’s drawing. They planned a drawing contest between her and another kid.

Finally, the teacher said we could take one last question. Jesse called on a friend whose hand was raised high. “Um, can I give you a hug now, Jesse?”

The class got up and it looked like Jesse would be swarmed. The teacher interceded and lined them up before they crushed her, and Jesse stood at the head of the line. One by one, hug after hug, these beautiful little people passed their love and acceptance to Jesse. It was so much that even Jesse — bastion of self-loathing, fortress of misery and cynicism — couldn’t find a way to cry foul on it.

It took my breath away.

 

 

Look for the helpers

I go to a Rogers Hospital facility four days a week, so it goes without saying that I think of Mr. Rogers all the time now.

?

No no no, it does not go without saying. It’s simply not true. BUT, as my Nick would say dramatically before digging into a story that I’m sure he finds really interesting — in a sort of New Jersey twang that Anthony has taught him, somewhere between stereotyped 70’s mobster and Donald Trump — Lemme  tell ya something.

Friday evening my friend Robin came over with her two boys, twins who were born within a week of Nick. They’re leaving town soon, so we have to fit ten years’ worth of twice-a-year playdates into about 6 weeks. It was just going to be a quick get together, but she blew in with her delightful mom, a rotisserie chicken, a pizza to throw in the oven, and a box of chopped fruit. Also champagne and chilled wine.

I knew exactly what she was doing; she knows we’re suffering. She also has a bag full of detritus to deal with in her own life, but she came here and filled my cup pretty well.

At Rogers, they want the parents of kids in the program to talk about our own needs with each other. And I’m surprised to report that I’m resistant. I don’t really want to talk about it with those parents. We have very different personalities on the face of things, and I’m not sure these hard-core Wisconsinites (Packers gear, every day) will appreciate my TMI attitude and somewhat bawdy sense of humor about our situation and about Jesse’s behaviors.

But Robin pointed out something I don’t really think about, which is simply this: because of my ridiculously open attitude, I have a tremendous amount of emotional support. My family may suffer, but we rarely do it alone. These other parents, however, may be more normal. That is to say, they may feel ashamed and alienated, perhaps even within the scope of their own families. They may not have anyone to really share their suffering with, and they may have a lot of reservations about opening up and receiving support. So talking about it in therapy is important.

That hadn’t occurred to me, big-mouthed and grumpy recipient of much love, support, and encouragement. And so Mr. Rogers comes to mind (even though it hasn’t been a wonderful day in my neighborhood for some time now). We’ve all heard the story. When he was a boy and saw scary stuff on the news, his mom put it in perspective for him:

“My mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of disaster, I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers — so many caring people in this world.”

My family’s travails are hardly newsworthy. Still, even in this infinitesimal space we occupy in the universe, in the teeny tiny disaster that constitutes my family’s current life, there are the helpers all around us.

* * * * * * *

My brother Mark has a wickedly cynical and comic insight into human nature. I can always count on him to make me laugh and cry at the same time. We had a typical far-ranging chat a few days ago, as Jesse and I were driving back from a tough afternoon session at Rogers. Mark regaled me with classic takedowns of a couple members of our family, and I remarked, “I would love to hear how you make fun of me when I’m not in the room.”

Mark answered promptly, “No, we don’t make fun of you. We just worry about you.”

I was a bit taken aback. “You worry about me? Why would you worry about me?”

There was a short pause before he answered, deadpan. “We just worry that Jesse’s sucking the life out of you.”

Mark and I burst out laughing. It was a raucous, bittersweet shared laugh, with much rueful head-shaking. Mark was making it funny, but I also knew he meant it. It was his poetic, comic way of saying, Carla, your family wants you to be well, we want you to take care of yourself. You matter.

Helper.

* * * * * * *

Jesse missed almost a full week of school a couple weeks ago, because we were going to Rogers daily for our initial work-up and orientation. The Friday of that week was her birthday.

Her behavior had been even more off-the-wall than usual before she stopped hitting school. Just nuts. She has disrupted her class frequently and daily this school year with bizarre behaviors and word blurts. She has caused a lot of trouble. These kids know there’s something wrong with her. In fact she’s told them, honestly and frankly, about what she struggles with.

When she returned on the following Monday, a pack of handmade birthday cards from her classmates was waiting for her. She pulled them out of her backpack slowly and deliciously when I picked her up. I could sense her disbelief. She read them to me one by one as we drove home. I was in tears by the fourth card.

We love you! Stay strong and positive! You are one of the best people ever! I hope you have an amazing birthday! I hope you come back soon! You are the dearest friend. You are nice and caring! I hope you have a fantastic day when we get to see you again. The best girl in the world.

Helpers.

* * * * * * *

Jesse and Nick attended the nature preschool operated by the local Audubon center. Jesse was a very challenging little preschooler, but somehow we built strong bonds with a few of the teachers there, amazing women who opened doors in my heart as a parent and allowed me to see Jesse in many different ways than what came naturally to me.

One of these teachers shares a birthday with Jesse. Last summer, after hearing about some of Jesse’s struggles, she reached out and took Jesse for a hike and filled her cup. Just last week she touched base to share love and hope — eight years after she became Jesse’s teacher. Another preschool teacher sent me a note last week as well, full of love and empathy, and reminders of how precious and unique a child Jesse is.

I was reduced to tears, though the feelings welling up were inchoate. Somewhere in the range of gratitude, awe, and relief. I don’t know what I ever did to deserve this kind of support, but I know what Jesse did. She has always walked with her curious eyes wide open, engaged and conscious — which may explain why life terrifies her so much.

But anyway, preschool teachers? Maximum helpers, Mr. Rogers style.

* * * * * * *

Anthony’s colleagues, our friends and acquaintances, Facebook friends, distant family, even total strangers who happen to read my blog posts. Everywhere we turn, there’s someone with an encouraging word — you’re making the right choices, don’t give up, Jesse is amazing — or an offer of practical help, like the family that took Nick home from school at the last minute so I could get Jesse to therapy one day. Life savers. My old college mate Jeanne, who declares that she’s the crappiest friend ever — totally wrong, because I’m the crappiest friend ever — sent me a loving and hope-filled note out of the blue. Mates from around the world chuck my figurative shoulder and lend me an emotional hand day by day. Cup-fillers all.

Just as important are the people who break with stigma to tell me about their own and their children’s struggles with mental illness, their own journeys to wellness, their own reliance on meds and therapy to survive. These aren’t celebrities who get airtime out of their disclosures; they’re just incredibly decent folk who want to help alleviate my family’s distress. I’ve heard from total strangers and I’ve heard from friends I never would have guessed have survived mental illness. The wall of silence makes us feel alone, but it’s a paper wall. Anyone who walks through it is a helper.

* * * * * * *

The problem for people dealing with mental illness is that there’s no news coverage telling Mr. Rogers’ helpers that we have a need. We have only our own voices. When I started writing about this stuff, I thought I was just getting it off my chest. But I’ve since realized that I’m also crying out for help. I’m making my own newsreel, because I don’t have the strength to survive Jesse’s mental illness in silence, by myself. I need to laugh and cry and share and laugh some more about it all, and I need to teach Jesse to do the same. The only alternative is emotional death.

So here’s today’s two cents from Carla, if you’re reading this and you’re suffering: ask for help; then look for the helpers. They are everywhere.

But not in a creepy way.

They’ll come through for you and yours, and they will lift you up. They’re listening, watching, waiting to catch you when you fall. You just have to let them know you need them… and then don’t be too proud to accept what the helpers offer.

I know what you’re reading here is weirdly positive and maudlin for this grumpy girl. Don’t get me wrong. I still think people suck. Humanity is full of blood-sucking not-helpers who get off on others’ suffering and failure.

For instance, there’s the person who overheard me at a party telling someone about Jesse’s OCD and our move to more intensive treatment. She interjected to tell me about a neighbor who’s child has struggled with “that same problem” since childhood, and now she’s in her twenties and it’s been AWFUL. Shakes head to accentuate miserable failed life.

Note to self: not a helper.

So yes, I still think people suck.

But also they don’t.

 

 

OMG CBT AND HRT FOR OCD, WTF??

We have begun intensive therapy in earnest for Jesse’s anxiety and OCD at an outpatient facility of the Rogers hospital system (which formerly would have been known as a mental institution, yeah?). In other words, Jesse has agreed (loosely) to allow us to stick her repeatedly with an emotional cattle prod.

Monday through Thursday, we leave home around 2:00 to travel to Oconomowoc, where we work hard from 3 to 6; we get home around 7 pm. It’s a really long evening, and it screws with our home life and extracurriculars immensely, but so it goes.

I like saying “Oconomowoc” frequently during the drive out. It’s not “AWK-oh-no-MO-awk.” It’s not “OH-ko-NO-mo-wok.” It’s Oh-CAW-numu-WOK,” which does indeed roll off the tongue sensibly once you get used to it.

What? you say I’m engaging in avoidance? No no, I just love Wisconsin names. Waukesha. Sheboygan. Wauwatosa. Kinnickinnic. Winnebago. Manitowoc. Menominee. On and on. What’s not to love? Don’t you love these names too? Do you think it’s okay that I’m talking about this?

What? You say I’m reassurance seeking? Stop, just stop. I think you’re being just a little bit overbearing and anxious about this whole conversation.

What? You say I’m projecting?? Now you’re really upsetting me. STFU.

What? Now you’re calling me infantile and hostile?

… You’re probably right.

* * * * * * *

Last week, Anthony, Jesse and I drove to Oconomowoc and met with the social worker on Jesse’s team for three hours on each of three consecutive days. We had lovely chats in which we went over as many of Jesse’s obsessions and compulsive behaviors as we could think of, as well as all of her expressions of anxiety and hostility. We filled out a host of forms and questionnaires. We were introduced to rudimentary ideas about cognitive behavior therapy, the main tool in the non-pharmaceutical fight against OCD and anxiety disorders. We catalogued all of Jesse behaviors and made a “hierarchy,” from most challenging to least, so we could pick the right ones to start her re-training with.

I challenge any grown up to begin therapy for mental illness like most children have to do it — sit in a room you’ve never  been in before and listen to the people you love and rely on most in the world, the people who know you best and with whom you’ve shared your deepest secrets, disclose just about everything that makes you suck to a total stranger.

Not surprisingly, Jesse was really pissed off.

* * * * * * *

In addition to the obvious extreme anxiety from which she suffers, Jesse seems to be somewhere in a shared zone between OCD and Tourette’s, and maybe her behaviors serve some attention-seeking motives as well. She’s a little messy, as most people are.

Jesse’s tics or compulsive behaviors, or whatever you want to call them, can be extreme: mostly they have to do with all things taboo.  Last summer and fall, issues of sexuality intruded most heavily in her mind and led to word blurts about sex and weird inappropriate physical behaviors. She also threw in a healthy, salty mix of something akin to George Carlin’s seven dirty words.

Then she evolved.

Some time in winter, she read a book at school in which one of the characters used the word “nigger.” Jesse brought the word home and we had intense conversations about the history of slavery and apartheid and inequality in America and the nature of the word, and about the many reasons why we never, ever use the word or say the word, except in some academic sense. She became obsessed with issues of racism and  and white supremacy. Now she blurts the word “nigger”, as well as other bigoted epithets, in all the wrong places and at all the wrong times.

I’m being a little facetious, of course. There’s never a right time or place for that word. As my brother Mark remarked, it’s on the top 5 list of worst words in America. Maybe even number 1. Totally, completely taboo, a word dripping in political and social sin, an evil word.

So of course, it calls to Jesse like a horrific siren song. It fills her head and pops out like a bursting boil, having no moral meaning in her usage except that it’s taboo, serving no purpose that we can discern except to fill her with shock and self-loathing.

This blurting occurs despite the fact that Jesse’s school has a significant minority population, despite the fact that many of her best buddies at school are black, despite the fact that her own mother is half Korean. There’s a really strange disconnect here. It makes no sense.

You can imagine the amount of aggressively negative and punitive feedback Jesse got from Anthony and me when this version of her taboo-blurting developed. We were loud, judgment, and frankly, ugly. We couldn’t bear it.

And still it took us months to realize that our current parenting skills and once-a-week talk therapy are simply inadequate to the task of addressing this problem.

* * * * * * *

Enter Rogers and a whole new bag of acronyms to teach us a whole new bag of tricks. Jesse is now admitted to the intensive outpatient OCD/anxiety program for children and adolescents, known affectionately as IOP OCD AC. The treatment approach for her will rely mainly on the cognitive behavior therapy approach, CBT, as well as a related theoretical model called habit reversal therapy, HRT. Both approaches bring to mind how one might train a dog, only maybe more sophisticated. At its most basic, the patient works on developing self-awareness regarding what triggers bring on negative behaviors, and then engages a “competing response” (the inevitable “CR”) to help block the tics and compulsions.

This sounds easy. It’s not.

Jesse describes the urges she experiences as overpowering. She reports that she tries all the time to control them, and  she simply can’t. She’s a failure, moment to moment. She experiences the urges not as a tingling or a funny feeling, like some OCD patients do. Rather she says it feels like big rocks are pressing on her heart and it’ll explode if she doesn’t follow through on the compulsion. There’s no hint of malingering or make-believe when Jesse finds her way to sharing these little details. There’s just the reality of her suffering.

* * * * * * *

Every day, rain or shine, fun or no, Jesse has to do two basic things as part of her treatment at the IOP OCD AC.

One, Jesse journals her negative compulsive behaviors (with a large assist from adults for now), with the goals of increasing self awareness and tracking progress. We have a wee notebook, and on each page there are three columns: “S” for submit, “R” for resist, and “CR” for competing response. If Jesse gives in to an urge, hashmark under the S; if she fights it off, hashmark under R. Either way, if she engages her competing response (pursing her lips tightly and clasping her hands together), hashmark under CR.

Again, it sounds pretty straightforward, but it’s actually excruciating when tics and compulsions are occurring every few minutes. Writer’s cramp ensues. Also for the first couple days, we weren’t using hashmarks. We were instructed to write down the descriptions of the behaviors. Can you picture how that went? Jesse resists an urge to say the word “ass.” She writes it down under R: “didn’t say ass.” She has effectively come through on her compulsion in a different form, so now she feels an even stronger desire to blurt it and she can’t fight it off.

Fail. We moved quickly to hashmarks.

Two, Jesse does exposure exercises, which basically go like this. She sits down with a timer and engages her competing response. Then I hit her with the cattle prod by presenting her with a trigger that heightens her anxiety. Right now we’re working on a lower-anxiety trigger. Basically, I stare into her eyes and bark something like, “DON’T SAY THE WORD FART. AND DON’T REPLACE IT WITH ANY OTHER WORDS OR BEHAVIORS. FART FART.” And she has  to sit there with her lips clamped, fighting the urge to blurt. She’s supposed to ride the wave of anxiety until it weakens to a place where she experiences it as “low” — until she habituates — or until she gives in. Stop the timer, record the result.

Eventually, we hope, we’ll move to more critical triggers. Show her a photo of two people kissing romantically. She fights back the compulsion to say sexual things or engage in sexual behaviors, through pure will power. Show her a photo of a black face, or of a scene from the deep south in the 60’s, maybe of cops attacking civil rights protestors. She fights back the compulsion to spew racist trash talk.

A strange torture all around.

* * * * * * *

I honestly don’t know how Jesse is hanging on. But she’s this amazing little beast, feral and beautiful and desperate.

On day one at Rogers last week, Jesse told the social worker that her behaviors don’t bother her at all. I pushed back. “Really, Jesse? None if it makes you feel bad?” Nope, she answered. It doesn’t bother me at all. On day two, the social worker wrote down some basic emotion words. Bad. Sad. Angry. Ashamed. Frustrated. She asked Jesse to circle the word that described how she feels about her behavior. Jesse hid her face, resting her cheek on her left forearm. Her scrawny little right hand reached out with a pencil and surreptitiously circled the word “ashamed.”

I felt big rocks pressing on my heart and I thought it might explode.

I don’t want Jesse to be ashamed anymore. It’s time for her to accept that the beast inside her doesn’t define her, any more than cancer or diabetes or MS define a person. Yes, her OCD and anxiety are part of who she is and always will be. Yes, the intrusive thoughts reflect something about her brain. But it’s time for her to comprehend that all the nasty, offensive stuff she does isn’t driven by a moral compass. It’s driven by a disease in her brain.

And the deeper, harsher truth is that it’s time for me to accept and comprehend these things as well. I’m working on it, day by day.

and here we go

I haven’t posted anything since Christmas eve. Just a few days ago I started writing something about spring and plants and some stupid shit, but today I’ve set that vapid nonsense aside for real life. This morning, we finally took the leap and agreed to admit Jesse to an outpatient treatment program for OCD and anxiety, at a local hospital that specializes in treating mental health disorders and illnesses.

I started out wanting to find some sort of support group for kids with OCD and extreme anxiety, to supplement the weekly private therapy sessions we already go to. It turns out, such a support group doesn’t exist in this area. There is, however, a local hospital system, called Rogers, that treats OCD. I spied them out on the internet and learned they have some outpatient programs for kids, and it got me to wondering. It didn’t take long for Anthony and me to acknowledge that the past 12 months have been the worst year of Jesse’s still-short life and our much longer lives. Every day is a struggle, in one way or another. She remains largely friendless, alienated, miserable. Lately she has developed a physical affect, her behaviors increasingly erratic, her eyes dark with misery and fear, her mind distracted almost completely and almost always by whatever lurks inside her. Every single weekday I wonder if I should bother to send her to school. As parents, Anthony and I are emotionally exhausted.

I was shopping at Whole Foods when the Rogers intake person called me back for the initial screening interview, to collect information to determine whether Jesse was a good fit for their program. I tucked my half-full shopping cart near the checkout lanes and sat at the bar in the hip eating area, staring out the store’s front windows. I answered question after question, trying not to cry too obviously or talk too loudly. We went through the laundry list. Does she have issues with cleanliness? Does she have obsessive thoughts about sex? Violence? Religion? Harming people? Is she cruel to animals? What percentage of her time do you think she has obsessive thoughts? What percentage of her time does she engage in compulsive behaviors? Is she afraid of school? Does she have panic attacks? Does she have temper tantrums? Does she try to hurt herself? On a scale of 0 to 10, 0 being totally functional and 10 being non-functional, where would you put her?

Is she ever happy?

The answer to this last one was so simple, and it required no explanatory clauses. “No.”

Clarity shaped itself around my answers. My child isn’t falling apart anymore: she has already gone to pieces. She can’t pull herself back together. Neither can I.

I waited anxiously for several days to hear back from Rogers. The doctors apparently looked at the screening interview notes and made some decisions. I got the call from the admissions lady today, informing me that they thought Jesse would be a good fit and they could get her in right away.

I promptly fell to pieces. Heaving, bellowing sobs unexpectedly took me from toes to shoulders. The nice lady was still talking. I spoke as clearly as I could through the convulsions. “Can you just wait a second? I just started crying and I can’t make out what you’re saying. I’m gonna try to take some deep breaths, give me a second.”

It was pretty clear this wasn’t the first time she had a parent fall apart at this moment in the conversation.

And so off we go on a new path in the journey. Three days this week, Anthony and I will accompany Jesse to 3-hour sessions with hospital staff to go over her situation and make a plan. Starting next week, she goes 4 days a week for 3 hours a day to a small group of kids and adolescents, for probably 8 to 12 weeks. A parent always has to be present. The commute is 45 minutes each way. The telephone lady remarked that she knew what a hassle it would be for us. I replied that it couldn’t be any worse than what we already endure at home every day.

I’ll try not to think about all the ways Nick is going to be overlooked in this process.  He’s 6 years old and well-adjusted, and I think he’ll be glad to see some improvement in Jesse’s behaviors. We’ll make it up to him somehow.

When my call with the Rogers person ended today, the sobs came barreling back. I laid my head on the desk and wept, and wept, and wept. I almost vomited. I hyperventilated. I smeared blue ink all over my face as I wiped away my tears with my calloused fists, because the only pen I could find to write with when I was taking notes on the phone was one of the kids’ goddam washable crayola markers in baby blue, and that stuff just gets everywhere.

I eventually took a deep breath and called my dear friend Erin. I was supposed to help her with a  tile job in her house tomorrow. Erin has known Jesse since she was three. “Hey Erin. I can’t help you tomorrow, I have something better I have to do.” There was silence from the other end of the line. “I have to take Jesse to a mental institution instead.”

Erin broke into peals of affectionate laughter. It was exactly what I needed to hear. And then she talked me down as I continued to shed tears.

I know this isn’t my “fault.” I know, rationally, that I’m not to blame. But my emotions aren’t there yet. Not only do I feel guilty for letting Jesse down and waiting too long to go this route, but I also worry about being too much of a martyr about it. I find myself trying to put Jesse’s suffering into perspective. Mental illness looks like nothing, really. I can easily say to myself that she’s better off than this person or that person — she doesn’t have cystic fibrosis, cancer, epilepsy, MS, physical disabilities, deformities, muscle weaknesses, intellectual disabilities, or any missing parts anywhere on her body.

But I know that’s a lie. Mental illness looks like suffering. It looks like self-loathing, self-injury, suicide. It looks like life cut short and lived hollow and imprisoned. Untreated, I know that’s what it’ll be for Jesse.

So we’re in. I’ll continue to let you know how it’s going when I can.

grumpy about inspiring inspirational inspirations

Thank goodness all the hubbub of New Year’s resolutions has finally died down. The worst thing about the New Year celebration is the vague inspirational one-liners that float ’round the web as people make implausible resolutions. That fluff is always present, but it surges hard for a couple weeks in January, pushing itself into my consciousness like a properly aimed gust of wind bringing me the foul, pestilential stench of an out-of-sight port-a-potty from down the street. I should just plug my nose and go on about my business, but I can’t stop myself from sniffing, spurred on by the unanswered question in my mind: does this shit really help anybody?

This year I spent way too much time on Facebook, scrolling through screen after screen of upbeat one-liners pasted onto images of cute animals and back-lit tree-scapes. And sometimes psychedelic images, which is even better. I eventually managed to get a handle on my dry-heaving and hari-kari-miming, and then I remembered that Marci Shimoff inspired me to own my grumpy by trying to fill my soul with chicken shit so that I could be happy for no reason.

Sorry, slip of the tongue — it was chicken soup she was selling, wasn’t it. Catchy.

Anyway, Marci’s an uber-master of irritating and meaningless one-liners.”Plug into presence.” “Forget the coffee, try a morning cup of connection.” “Feel your feelings.”

Just… Bite me. There’s an inspiring one-liner for you.

It is hard to top Marci’s mastery of the vacuous uplifting quote, but that’s not stopping humanity from trying. Here are some of the lines that crossed my path this year and got my grumpy aura glowing wildly.

Wait. An apologetic before I continue: I know what’s coming is going to sound and seem hostile and, well… It is. Sometimes I have a lot of hostility toward peeps who pour on the random upbeat, positive, can-do crap. I’m too cynical for that. I can’t look at the miseries of life and say, gee, this isn’t so bad, it’s all in my head, blah blah blah. I guess that helps some people. Not me. I’d rather look at the fire I’m walking through and scream “THIS SUUUUUCKS” and come out the other side thankful to be alive, relieved my burns aren’t so bad (i.e., I’m not dead), and grateful if there’s anyone there to help me. See? I’m optimistic and upbeat. I just want my upbeat a certain way. Reality-based and very specific.

Right, so here’s my grumpy list of useless inspiring inspirational inspirations:

ACCEPT YOURSELF. (flowers and sunrises)

But what if I’m an asshole? I don’t think I should accept that at all. In fact, I think the root of change is exactly the opposite of acceptance. DON’T accept yourself. Maybe forgive yourself for being an asshole, and then stop being an asshole by whatever means are available to you — therapy, self-flagellation, confession, meditation, charitable work, whatever it takes.

I get it. Don’t beat yourself up for those extra pounds, don’t look in the mirror and hate on yourself, and so on. But if that’s what the one-liner is getting at, then it should say so. “Accept the things about yourself that are acceptable.”

Dr. Abrams, Jesse’s therapist, has this incredible approach to her self-loathing. When she tells him she’s hating on herself for something she’s done, he typically answers, “Well why don’t you change the things that are making you dislike yourself?” Aha, and duh, and why didn’t I think of that. You want to make a new year’s resolution that matters? Don’t accept yourself. Identify the ways you suck, and then try to fix them.

LIVE, LAUGH, LOVE. (rainbows and trees)

I have an admission to make. I bought a box at Michaels that said these three words on the cover, even though this alliterative word string drives me crazy. In my defense, I bought the box because it was on super-sale and just the right size I needed for some Christmas ornaments and it wasn’t a totally hideous color. Otherwise, honestly. Please don’t ever tell me to live, laugh, love and expect me to be moved in any way. I DO live. I’m doing it RIGHT NOW. Still doing it.

Still. Living.

Miraculously, living just happens to us while we’re alive.

If you mean to tell me to live a certain way, to experience life more fully or something like that, then say so. Jeez. Why be so cryptic?

As for laughing and loving — well, shit, that’s a pretty big directive. If a person is having trouble laughing and loving, there might be some significant problems going on, like maybe her life sucks, or maybe she’s depressed or has some issues. Maybe she isn’t well served by a superficial directive that says, in essence, go stop sucking.

But I guess it’s not as inspiring to put this quote on a picture of a sunrise. “If you’re unhappy and lonely, and you have trouble connecting to people, seek help. Therapy is a good option.”

MAKE IT GREAT.

Make WHAT great, asshole? I know, I know, whatever I’m doing. Well what if I’m taking a dump, or wiping my 5-year-old son’s ass after he takes a dump? Do I really need to make that great? Can’t I just survive it and move on?

I INSPIRE.

I followed a silly-looking link one day to a website whose tag line was “I inspire.” Wow. You INSPIRE? That’s hubris. And very broad. The person who wrote that inspired me to leave his website immediately.

I’ll tell you what inspires me. When people DO inspirational things. Yes, MLK Jr said many inspiring things, but they would have been empty tripe if he hadn’t acted. He inspires me by virtue of what he did, not because he told me he’s going to inspire me. I have a friend who just ran her first marathon and she’s almost 50. I’m inspired. And she didn’t even tell me she was inspiring me. Oh wait. She wasn’t trying to inspire me, in her own mind. She was just running a marathon! Still totally inspiring.

And now I’ve written and said that word enough times that it looks and sounds funny. Inspire. Inspired. Inspiring. Inspiration.

LIVE EACH DAY LIKE IT WAS YOUR LAST.

Worst. Advice. Ever. As Anthony-the-economist put it, this advice tells you to discount the future by exactly 100%. That’s just stupid.

If I lived each day like it was my last, I would never do any of the following things. Wash clothes or dishes. Clean the house. Take my kids to school or the dentist. Make healthy meals. Take a shower. Read a book. Exercise. Take my blood pressure meds. Care about anything. Instead I’d spend every day fighting off bitter, angry tears over my imminent demise. I’d cling desperately to my children (I’m talking physically) until they got freaked out and ran away from me. I would live a raw, insane existence.

Come to think of it, sometimes I do live like this. Huh.

(Extended awkward moment of silence while I think about what the hell I’m doing with my life.)

I’m back. Sorry about that. Anyway, I beg you, DO NOT live each day like it was your last, even if this inspiring phrase and the beautiful sunset photo accompanying it come through your Facebook feed. I don’t think it’ll turn out well.

MAKE A DIFFERENCE.

Awww, come ON. This stupid one-liner was in a list of things you allegedly need to do before you turn 50, or something like that. It’s just empty nonsense. Adolf Hitler, Osama bin Laden, Charles Manson and Timothy McVeigh made a difference.

You want me to make a difference? Point me in the right direction. I’d rather make NO difference than an evil, life-destroying difference. Incomplete advice like this might just create the next Darth Vader.

DONE IS THE ENGINE OF MORE.

Uuuuuugh. My head just flopped backwards at a 90-degree angle. My tongue fell out of my mouth. And nooo, it’s not because of the margarita I’m drinking. Here’s all I need to say to the person who tells me “Done is the engine of more”:  fuck you.

TRUTHS ABOUT SUFFERING.

This isn’t a one-liner but an inspire-you list someone posted to Facebook, so I’m going a little off-message — but bear with me. A fellow named Jeff Foster apparently wrote some “truths” about suffering. He says things like this. “Circumstances cannot make us suffer… You could probably boil all of your suffering down to this: ‘I want to control this moment but I cannot.'”

Yeah. Tell that to victims of violence, of torture, of war, of famine, of cancer, of all manner of disasters and vicious diseases. I bet most of them disagree.

This guy also talks about “innocent energy clouds.” Oooooh (eyebrows up). I’m crossing the street when I see Jeff Foster walking down the sidewalk toward me, because otherwise I will want to sock him square in the face and tell him this. Jeff, my friend, you are a complete asshole and a thoughtless lout. Circumstances CAN make us suffer, even when we know we can’t control the shit that’s happening. I have a neighbor whose young son was in the ICU for days with whole-body staph-like infections. There were question marks. It was horrible and scary, and those circumstances made her family suffer. I have a friend suffering from a brutal auto-immune skin condition that makes him experience pain like a burn victim, and the treatments have been awful and it’s all very difficult. His suffering is circumstantial and REAL. Even if he accepts that he can’t control the moment, he will continue to suffer until his condition is brought under control.

Can these folks survive what’s going on with grace and acceptance? Of course, and they are. But not with platitudes and false one-liners. They are struggling, fighting to find a path that brings light and hope into their lives. I love them for it. I love them for sharing their suffering and their needs and their journeys, without faking like they’re okie-dokie.

I mean, I get it. If you’re talking to first-worlders who bitch and moan about their opulent lives without having any real trouble to speak of — say, first-worlders who are, I don’t know, grumpy for no reason — then making the point that we, I mean, they shouldn’t be “suffering” is great, because really, we have it good. And I guess it doesn’t work to paste the following one-liner over a picture of a happy polar bear mommy rolling in a snowy bank with her two cubs: “Get over it. Your life doesn’t suck.”

* * * * *

I understand that I’m probably outside the mainstream. Some people need these one-liners to cope with tough moments. But it doesn’t work for me. If you want to inspire this grumpy girl, you’ll need to get really specific and really plain-spoken. Like this:

Have you looked in the mirror lately? (motivation) Get a haircut.  (inspirational directive)

You smell bad. (motivation) Go take a shower right now. (inspirational directive) (Anthony uses this one on me regularly. It works every time – I go straight to the shower.)

You don’t help other people enough. Go volunteer some time for a charitable cause.

You’re really grumpy.  But it’s okay, I still like you. (See? I told you I was an optimist.)

* * * *

Now that I’ve gotten all that off my chest, I’m realizing what a downer I am. I need to change. I need to see myself a new way. I will imagine a different me. This year, I’m going to start over. Because every day is a new day. Every day is the beginning of the rest of my life. And I have the power. I am the master of my feelings. Love can lift me up. Acceptance can bring me closer to happiness. I can make a difference. I just need to smile a little more, because everyone smiles in the same language.

farts and therapy go well together

This afternoon I took Jesse in for her weekly meeting with her psychologist, Dr. Abrams. In the past few sessions she’s crossed over to a new level of engagement with him. When I leave her alone with him in the office she doesn’t have a fit anymore, and it seems like they’re able to have more constructive conversations about things that are going on.

Dr. Abrams seems to have embraced a sort of uber-positive approach with Jesse. Recognizing how critical she is of herself, he finds every opportunity to highlight and praise encounters and behaviors she can feel good about, no matter how small. He says things like, “I’m proud of you but I’m not surprised, because I know you can do it.” I think he’s also modeling for me, to gently remind me to keep my eye on the up side of things. Jesse usually leaves his office acting and apparently feeling a lot better. This evening as we walked out to the car, she announced, “I think I’m a caring person, aren’t I.” She was very matter-of-fact, but this is no small statement for her. Most days she tells me the very opposite about herself at least a couple times, like a litany, “I’m a horrible bad person and I do everything wrong and I ruin everything and you hate me.” I’ve heard it so much that I don’t even feel all that bad anymore; it’s just how Jesse is. Hearing her acknowledge the alternative truth? That’s a rare something.

I can see why today’s meeting helped her feel better. At the end of a session, Dr. Abrams fills me in on anything he thinks is important for me to know, usually no more than brushstrokes about topics that were on Jesse’s mind. Today Dr. Abrams let me know that Jesse told him Anthony has very smelly gas. I readily acknowledged this fact of life. Dr. Abrams looked a little skeptical or worried as he added, “she says sometimes daddy farts ON her?”

My mouth opened before I could stop it. Oh yeah we do! In my world, if you’ve got one loaded at the right moment, you weaponize that fart. It’s a very effective way to get even and to get some alone time. I even demonstrated my delivery method (though no ammo was available) on Nick, who was peacefully playing with an electronic device. Nick took no notice, but Dr. Abrams’ facial expression had me mildly concerned, so I asked him, don’t you fart on your kids? “Actually, no. I don’t.”

Mmmm. I anticipate that this will at least help Dr. Abrams have a better sense of the conditions in which Jesse is growing up. Maybe just being able to tell someone that her daddy farts on her is enough to improve Jesse’s outlook. I know that venting always makes me feel better, regardless of which end it’s from.