Look for the helpers

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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??

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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.

spring cleaning

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Around this time last year we started pulling up wall-to-wall carpet in our bedrooms and trashing our house. Not long after, we fell into the bottomless pit of home renovations: the walls of our house came crumbling down, and my daughter’s emotional wellness was shattered like thin glass in a tornado.

The renovation journey was painful. The carpentry sub, who made a good first impression, eventually turned that into a permanently very bad impression. It took most of the fun out of things and made me not want to think about it too much (which is why I still owe you a final update on the project, dear reader). The labors we took on to make up for the carpenter’s alleged overruns, along with the work we had always planned to do ourselves, overwhelmed us. By the time we were done with our part, some time in late December or early January, my hands had been practically flayed. I’m hoping that someday many of the nerves will re-grow back down to my fingertips. In the mean time, if you need a pan taken out of a hot oven and don’t have a mitt, give me a call. I can probably bare-hand it with nary a squeak.

Even with the bulk of the renovation completed, I still labor under the crushing and currently-uninspiring weight of our tiny-things punch list. Which is to say, I am doing nothing. Nuuh. Thing. The house is still a mess as we try to figure out where we want to put stuff away. Our practical furniture is trashed and needs to be re-upholstered. We need to do a lot of touch-up painting and wood finishing (I claim to be waiting for warmer weather). I need to build some shelves and drawers in new closets so we can store things efficiently. We don’t have bed frames or window coverings. And I can’t find my sewing needles — the pin cushion is simply missing. Where did it go? I’ve been hunting for a tiny wormhole in the basement, but so far no luck.

Add to this the downward spiral of Jesse’s mental condition, and the times are right for me to sink into annoying and useless bouts of self-pity. More on all that in the days ahead. Meanwhile:

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We all have our crosses to bear. Or at least, smallish lake-tossed tree stumps.

* * * * * * *

The important thing right now is this: spring is hitting Wisconsin, bringing with it many opportunities for shallow life metaphors masquerading as deep insights, moral allegories that boot you nothing, and falsely optimistic ideation. Spring limps into town around here: one day it’s 60 degrees, the next day it’s below freezing. Wisconsin Spring has a mood disorder. Look, let me show you:

March 23. Christmas roses opening first blooms. Snow-free.IMG_1497.jpg

March 25, two days later. Snow. Sledding. Snowman.IMG_1616.jpg

March 28, three days gone. Snow gone. No coat. Feels like early spring.IMG_1521.JPG

April 2nd. Snow storm.IMG_1544.JPG

April 3, ONE DAY has passed. Snow gone. Confused males still present.IMG_1549.JPG

April 8. Christmas roses now inundated in… snow.IMG_1610.jpg

April 16. Shorts and tees. 85 degrees. Sunscreen. Carnival rides.IMG_1678.jpg

Sorry. I’m misleading you. That last picture was taken after we fled to California.

* * * * * * *

As the snow melts, we typically see signs of winter’s death, even as life digs out anew.  I find that I look for the dead things now, though I don’t rightly know why. No doubt something to do with endings and new beginnings and other inspiring or depressing metaphors, take your pick.

We found this lonely little skull along a hike a few weeks ago, during one of the first warm spells. We’re not sure what kind of animal it was. The molars suggest a plant eater, but the longer jaw might be suggestive of an omnivore, the kids argued.IMG_1548IMG_1547

And we came across this wee critter. Mole? Vole? Don’t know. Dead? Definitely.

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It looked fresh, but we couldn’t be sure. It might simply have been frozen under a bunch of snow until the night before.

* * * * * * *

We’ve spent the last few weeks weeding and clearing things out in the yard. The garlic mustard is having a banner year. We never had time to weed last spring and summer — a really critical and ongoing task when you don’t spray pesticides and herbicides — so it looked like our woods have been carpet-bombed with that blasted plant. Getting it out of a half acre of woods was as bad as knitting a XXL Irish fisherman’s sweater. It’s enough to make you search on Amazon for flame throwers.

Still, our overlooked gardens didn’t seem to mind their abandonment.

The hellebores don’t give one flying shit if we take care of them. They bloom profusely, spread seed like rabbits spread poop pellets, and ask only that I cut away dead leaves in the spring so that they can look prettier when those flowers poke up.

Look at what those snow-bound Christmas roses look like now.IMG_1800

This patch of hellebores was nothing more than 3-inch tall seedlings just a couple years ago.

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I never get tired of these little beauties.IMG_1504IMG_1561

The siberian squill has gone bonkers in the woods, creating a blue haze that confuses my eye.

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Even our Virginia bluebells are thriving. A few years ago, I was out weeding before they bloomed, and I concluded they were a weed. Anthony stopped me after about 20 vigorous minutes, but I had already decimated the naturalized population. This year they’re making a comeback on their own.IMG_1807

Our daffodils are lasting a long time this year, and even these broad purple leafed thingies, whose names I can never remember, are coming in steady and strong.

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Our newest front garden, still young and changeable as we fill in gaps, helps the house look like something out of the Hobbit at the right moments. The magnolia this year has glowing white blooms, and even the youngest hellebores have made a good show.

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Bleeding hearts we thought were dead had simply moved themselves a foot or two up the loose rock retaining wall, sprouting unexpectedly in new spots. Still alive, just migrating. I wonder where they think they’re going?

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Behind the little blue/white volunteer flowers that remain unnamed to me, you can make out the browning leaves and tiny green flowerets of two mature hellebores foetidus, aka “stinking bear’s foot.”  These friends are the children of a pricey specimen that died some years ago. I was sad but let it go and decided the climate must not be right. A couple years after it kicked the bucket, I found two tiny familiar-looking seedlings along the dirt path. I couldn’t believe it. I moved them to a warm spot on a whim and, miraculously, they survived to become these messy beauties.

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Our garden is full of volunteers, like these little young hellebores in the foreground of this shot, which have seeded themselves along our rock walls. I don’t really want them there, but I don’t have the heart to move them. They’ve worked so hard all on their own, and even made pretty flowers for us. They’ve earned the right to stay. Namaste, I say to them, as I bow with respect.IMG_1816

The only real eyesore in our backyard is the zone around where the construction work happened, including a lot of digging for the new foundation. It’s just a ton of fill dirt.

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But even here, if you set your eye to something other than bare wood, bad dirt, dead rocks, and exposed insulation foam, you see life finding a way out.IMG_1813IMG_1814.jpg

And while all these early spring blooms light things up, out front next to our decrepit front light pole, the butterfly garden and raspberry patch await the warmer months.IMG_1796.jpg

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Spring gardening is the best kind of spring cleaning. Weeding, digging up garbage, staring at a pretty plant here that made it, rooting around for evidence of a well-loved plant there that didn’t make it, wandering in the woods wondering what little surprises I might find to transplant somewhere I can enjoy them better, anticipating what will come up in the days ahead — it all leaves me blank and happy for a time, filled with small wonders and empty of the worries that stalk my days. In those moments, I understand better what Jesse’s doing when she heads out into our woods and wanders around slowly, staring up into the trees and down around her feet. She’s discovering a small peace.

You’re probably waiting for me to say something meaningful and metaphorical about how gardening and nature is like parenting, and plants are like kids, and pests and weeds are like mental illness, and the sun is like hope, and blah blah blah.

Nope. I just wanted to show off our gardens, which need no anthropomorphizing to be meaningful. Make your own metaphors if you must; and if you must, you may as well do it in a garden.

 

 

 

and here we go

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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.

Christmas Eve Blues

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I wake up this morning early with a little tremor in my brain. It’s Christmas Eve and there’s a lot to do. 

I duck out of the house as soon as I wake up, without even a cup of coffee. I head to Whole Foods to get food for Christmas Day and the weekend. I’m alone so this is AWESOME. 

I start by getting some eggs from the breakfast bar. Eggs are among my favorite foods, but Jesse’s allergy means a strictly egg-free house. So I sneak them whenever I can. Today’s Whole Foods eggs are, unfortunately, rubbery. Don’t I deserve tasty eggs today? Is that too much to ask?  Bah. 

I get everything I need, and I even bump into a couple mommy buddies and chit-chat a little. But I can’t really enjoy the conversations as much as I’d like. In the back of my mind I’m counting the hours I have (OCD style, over and over again) to accomplish everything on the menu today, and I’m subtracting the minutes I’m losing as I indulge in pleasant conversations with people I wish I could actually spend some relaxing time with. Bah. 

From Whole Foods, I drive to Michaels to pick up art supplies for Nick’s gift and some stocking stuffers. Nothing I want is on sale. There are sale signs everywhere. Everything in Michaels is on sale today except for the fourteen items I buy. Bah. 

While I’m in Michaels, Jesse calls me to ask if we’re going to finally get our outdoor lights up today. Otherwise Santa won’t find our home. I ask her to put Daddy on the phone. I ask Anthony if we can get the lights up. “We’ll have to see,” he answers grimly, “we’re cleaning the house right now.” Bah. 

I feel completely grinched and also I feel a familiar incoherent rage seething up inside me. By the time I get home, it’s a roiling little sun burning in my head. I don’t even remember much about what goes down, but it climaxes in me yelling at Anthony about being grinched. Even as I blow, Jesse and Nick begin mocking me, silently mimicking my gesticulations and jawing. I don’t look at them because apparently I’m enjoying my wrath and I don’t want to laugh. Instead I march into the bathroom as I holler about how Anthony never-ever-ever apologizes to me for anything. EVER. By now everyone knows I’m a ridiculous human being. My raging sun fizzles out as I hear Jesse and Anthony  laughing at me while I pee. 

Bah. 

Everyone makes nice after that, and much kissing and snuggling ensues. I head out again with Nick to shop for gifts for Jesse and Dad. He already knows what he wants to get them. First stop, Trader Joes. Nick wants to get Anthony the GIANT bar of chocolate, mommy it’s GIANT and the biggest chocolate ever and I know daddy will love it and maybe he will share it with me.

We go to Toys R Us next for a little robot Nick wants to get Jesse. As we walk through the parking lot, Nick orders me to STOP. He’s spotted a huge flock of seagulls on the wing. He watches them, frozen and mesmerized, for a good two minutes. I’m patient, because I’m enthralled by my child, who gives wild seagulls priority over a toy store. 

We finally walk into the shop. We find what Nick wants in two minutes and then spend 25 minutes waiting in line, next to all the little candy products. Mixed in with them innocuously are some small Advil containers. I point them out to Nick. “Why do you think they sell medicine here for grownups who are having headaches?”

Nick doesn’t even have to think. He starts to fondle the candy choices. “Because of this, mommy.  Can I have this? Can I have that? What’s this? What’s this? What’s this? Can I have this?” 

Clever boy. 

We turn on the radio as we drive home. “Feliz navidad” is playing and I start to bellow along. Nick speaks plaintively from the back seat. “Mommy please stop. Can we turn off this song?”

“Why? You don’t like it?”

“Nooo… I just don’t want to think about you dying right now.”

?

“Nick, what are you talking about? It’s a Christmas song!”

“Then why does he keep singing ‘at least mommy died’?” 

When we get home, Anthony has finished setting up our outside lights before taking off with Jesse for some more shopping. My eyeballs turn into pink puffy hearts. It’s a zero-bah moment. 

Nick starts watching Pocahontas II, which I can’t possibly understand, but then I remember the bike shop closes early and we have to go get Jesse’s ninja bike. Nick grumbles his own “BAH” but comes along anyway. We rush home to hide the bike and he settles back into his movie. 

Life moves smoothly from there, and even Jesse’s occasional penis moments don’t ruin things. I make a cranberry walnut quick bread, and Korean spicy chicken stew for dinner. The kids seem remarkably calm as the evening winds down. But then suddenly and inexplicably, Nick comes to realize that Santa is coming TONIGHT, not tomorrow, and he goes berserk.

We heat up mince pies for the ‘rents and Santa, hang the stockings, and try to watch White Christmas. As Rosemary Clooney and her sister sing their duet, the kids embellish with random comments and a variety of wiggling and fussing. 

But no matter. It’s Christmas Eve, so it’s time to celebrate the gift of children — of my children. 

 
    
They remind me to care about the future of our world; they bind me to the magic of childhood; they teach me how important silliness is to a healthy soul; they love without limit. 

So here’s my Christmas wish for me and you: may your day be merry and joyful, with unrelenting giving and the laughter of children (no worries if you don’t have any with you — laugh like a child and that counts).  May you have the opportunity to eat way too much food. And may your heart be bah-free for 24 hours. 

Or at least 12. Don’t tax yourself too much. It’s the holidays. 

Grumpy about the construction project (F#**ing trim)

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I’m installing trim today. A lot of wood is stained and sliced via the table saw to the correct widths. All I have to do right now is cut side casings to length and nail them in place.

It took me over an hour to install just three pieces today. The first piece went in easy. The second piece, I cut wrong. Too short. A wasted plank. I got it right on the second try. The third piece, I needed to notch out some wood on the trim to make space for the little thingy that the doorknob latch thingy goes into. I think you know what I’m talking about, right?

This would not be necessary if we were using standard trim, but no, we’re making it ourselves to meet our own personal ego specs. In order to do this, we had to buy one of those worksite table saws. All my life I’ve wanted a table saw, except for right now. I don’t want a table saw right now because I’ve used a lot of cutting power tools recently and, frankly, they frighten me. We got the table saw anyway, and I actually used it, despite the story our babysitter told us about some man who cut off the tips of all his fingers on a table saw min her parents’ basement.

We ripped plank after plank over the weekend. During most of the work, I was filled with a steely mix of terror and courage which kept my hands from shaking too much. I took many deep breaths, which helped keep the panicky feeling at bay.

“Steely” might be an exaggeration. Maybe a softer metal alloy is a better metaphor.

On the up side, the way I felt at the end of each day — emotionally and physically exhausted despite very little physically demanding labor — was a good reminder of what Jesse feels like most days because of her anxiety. She really is steely. Raw fear will wipe you out.

Anyway, the notch: first I tried the router because it already had this little chamfer bit in the chuck. (I just like saying “chuck” and “chamfer bit” in the same sentence. There’s a little chamfer bit in my router chuck, baby, you wanna stop by?) That didn’t really work despite a lot of fiddling and testing, so then I got out the good old hammer and chisel and had at it. Success, though it looks like a beaver sharpened its teeth on our casing now. Then I installed that bloody piece of wood but I forgot to stain the now-bare wood that was exposed by the notching, so I had to grab a little rag and try to shove some stain in there in the little space between the casing and that little doorknob latch thingy.

Don’t tell Anthony; maybe he won’t notice.

Things got a little better after these initial pains, so I’m working along smoothly now, except I got hungry so I’m eating lunch as I type this.

So far I’ve used the miter saw, nail gun and pancake compressor, and router. I’ll probably have to throw one or more power sanders into the mix at some point, and that will just complete me.

Done eating. Back to work.

 

staybandoning in place

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I’ve been doing a lot of stuff for the past 37 days and apparently none of it involves writing a blog post. Which sucks for me personally, because it’s so therapeutic, but does allow me to take care of real things going on around me. Like family visits, Thanksgiving, a Christmas tree, finishing construction on the house…

Shit like that. 

Nick keeps telling me, “mommy, I need some more love.” But honestly, a new iPad game or Dunkin’ Donuts treats seem to be perfectly adequate substitutes for him. 

Jesse glumly told me today that I’ve abandoned our family Christmas traditions this year. She added that I need to get some exercise and lose weight. She looked at me hopefully as she said these things, but I couldn’t muster the rise she was looking for. 

Both kids are obviously resigned to getting no real attention from me these days. 

Other people talk about enjoying staycations–and holy crap, thank you autocorrect for changing that word to “stagnation”! Autocorrect is in sync with my head tonight for a change. 

Staycations really are a stagnant notion in my opinion. I can’t imagine much that would be more oppressive in my blissful domestic life than staying home with my kids for an extended time, recreating… At home… Like we always do. 

I can top the staycation. I’ve embraced a new stay idea, which I call staybandonment. I have staybandoned my kids for the past six months as I deal with our home renovation. I’m here in the home with them, but they are totally reliant on their own devices and I’m useless to them. And also they’re stuck here, because I’m too busy working here to take them anywhere.

I guess I should feel guilty, but today I’m choosing not to because Jesse said something really unexpected to me. “Mommy,” she announced cheerfully out of the blue, “today has been a great day!” 

I can’t remember the last time my down, anxious, OCD-addled, self-loathing child was so upbeat.  

And as for Nick, well, he’s Nick and he’s resilient. Daddy took him out to dinner and played with him, and his cup seemed well-filled as he fell asleep in my arms tonight, his eyes drifting shut peacefully as I kissed his sweet forehead. 

Well then. Carry on, my little staybandoned spawn. Keep up the good work. 

I’ll take the heroes, please

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A couple days a week, I take Jesse out of school for two hours in the middle of the day so she can breath freely and regather herself, as she continues to push her way through the roadblocks erected by OCD.  Today I took her to Whole Foods for lunch. As we noshed on our pizza and sushi, the TV in the eating area was running some talk show on Fox. I have no idea what it was called, but it was four makeup-clad women with pushed-up boobs blathering away with a great deal of energy. Thankfully, we couldn’t hear the audio, but subtitles were running.

Needless to say, in our Roku-based, ad-free, streaming world, my kids and I are almost never subjected to this sort of torture. Jesse stared unblinking at the screen for a while, and slowly her mouth stopped chewing. Then she turned to look at me, a little puzzled and incredulous.

“What are they doing?”

I didn’t quite know what to say. “Talking. It’s called a talk show.”

“What do they talk about?”

Uh… “Stuff. I dunno.”

“Why?”

Uh… “Because I guess people think it’s fun to listen to them talk about stuff.”

A numb silence descended on us for a moment. Jesse started eating again and watched the screen. “Who are they?”

Uh… “People who want to be famous.”

“Are they famous?”

“I don’t know. I guess so.”

I thought about it a moment. “What do you think would make a person famous, Jesse?”

My little monster/angel thought about it. “Maybe… a hero. Heroes should be famous.”

My heart started humming. I looked at my sweet thing. “What other kind of people do you think might get famous?”

“Someone who rescues animals and people.”

My heart started dancing. “Who else?”

“An inventor. Someone who invents amazing things. Like medicines that save people.”

Rainbows appeared and rays of sunlight shined on my soul. “Who else?”

“Someone who discovers a new species, now that would make you famous!”

I tried not to cry as my eyes gazed at the beautiful face of my child, my first-born, my mirror, no longer distracted by the garbage flowing through the television screen in my peripheral vision.

I couldn’t even voice my cynicism as I pondered how wrong she is about fame. I didn’t have the heart to tell her.

But she shouldn’t be wrong.

Let’s stop vilifying and glorifying the sick, psychotic, desperate people who revel in killing, taking, judging, condemning. Let’s stop worshiping at the altar of the weapons they use to do it. Let’s stop giving so much air time to people who want to be heard just because they want to be heard, but who don’t give a shit about the message they deliver. Let’s put alleged physical beauty where it belongs in the pantheon of things that matter. Like lower, much much lower on the scale of things.

Let’s find the heroes, the rescuers, the healers, the inventors, the seekers. Let’s celebrate them. Let’s fill the airwaves with 24-hour coverage about them and make them famous. Maybe our lost souls will look to them and find a better way out of the darkness. Maybe we can use the power of all that untapped goodness to start making some changes around here.

 

 

 

grumpy about the construction project (dreams)

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I haven’t posted recently about the construction project, or about anything for that matter. I haven’t had a day off in weeks and my body is weary, but my hands have taken the worst beating. My fingers are arthritic from all the manual labors, and the skin on my fingertips is flayed and cracked from tiling (mark my words, cutting and laying glass mosaics is bitter work). So typing literally hurts.

In addition to random tasks like trimming kitchen cabinets and cleaning up debris and feeding my children (most of the time), I’ve been doing a lot of tiling recently. If I ever tell you I plan to lay 200 square feet of two-by-six-inch subway tile on walls, in a brick pattern, slap me silly and then institutionalize me, because I’ve done it twice now and it’s as endless and insane a task as knitting a sweater for the Statue of Liberty.  If I ever tell you I want to lay glass mosaics that are “paper fronted” instead of “mesh backed,” go on and slap me silly again. I have been tormented by our beautiful, miserable tile choices.

Here’s the good news. We have a kitchen again. Our plumbing and electrical work is almost done. I have pictures. But I’ll tell you about all that later. Right now I need to tell you about the dream I had last night:

I live in a cave system, along with other people who appear to be part of my village. Heavy rains are falling. I peer out a hole in the cave in which I’m sheltering, and I watch the torrential waters fall. Suddenly I know a giant tidal wave is coming! It races at me and breaks through the hole in the cave! But it isn’t water. It’s a mass of tiny green mosaic tiles cresting in a wave over me. It crashes down and crushes me. I wonder if I’ll die from the weight of it, if I’ll suffocate under it. But I manage to push my way up through it and catch air.

I wake up in a cold sweat.

And that’s how the construction project is going.

 

It’s okay to talk about mental illness

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I wish it was as okay to talk about Jesse’s OCD as it is to talk about someone else’s autism or ADHD or Down Syndrome or physical disability. I wish teachers didn’t look at me like I’m CRAZY when I broach the idea of speaking with students about OCD and how it affects Jesse. The strangeness of true OCD is still too much for people. It speaks to stigma.

Jesse stood up suddenly in the middle of a silent math class last month and screamed out that she wanted to have sex with all the boys in there. Then she singled out two boys and invited them to have sex with her. She couldn’t stop herself. The teacher sent her to the principal’s office and she was promptly suspended for a day. They made Jesse sit alone in the principal’s office for two hours, her heart filled with humiliation and anxiety and the continuing obsessive thoughts. Then the principal called me and pleasantly informed me of what happened and of the suspension, about five minutes before I picked Jesse up at the end of the day.

I had just met with the principal, the school psychologist, the school counselor and Jesse’s teacher four days earlier, because Jesse had been blurting penis talk. We discussed OCD. We discussed the lack of volition behind these behaviors. Everyone nodded and said yes, yes, let’s try this and let’s try that. And then they did none of it and then they suspended her. During the pleasant call regarding the suspension, the principal informed me that they would never expel Jesse. No no no. They would use progressive discipline and eventually, if things didn’t improve, they would “suspend her in place.” That means Jesse would spend her school days in a room by herself, learning alone.

I remember laughing when the principal told me that, but not in a happy way. I remarked, “If you do that, why would I send Jesse to school?”

Because it is definitional stigma — the total shunning of an individual.

Well, let’s be more specific. Of a small child suffering from a severe bout of mental illness.

I don’t think for a moment that the principal was being thoughtless, intentionally unkind, or a strict disciplinarian. She’s actually a delightful, warm, caring person who seems to want to do right by Jesse. After the suspension, I sent quite a long letter to her and other people at the school, laying out some ideas for how to modify Jesse’s school day and give her some therapeutic tools to help her cope. The principal has been responsive and accommodating, open-heartedly embracing all of my suggestions. So I conclude that silence in our culture has left her ignorant — as I have been — about what OCD does to a person, and how utterly useless the usual disciplinary tool bag is.

Of course Jesse shouldn’t be saying sexually provocative things in fourth grade classrooms — or anywhere for that matter. Although here’s an aside. How exactly can we judge her when our world is overflowing with sexually promiscuous images and porn? And let’s stop blaming the internet. A simple trip to the grocery store can fill a kid’s head with hyper-sexualized images as she waits in line staring at magazine covers. And why should we judge Jesse more harshly than the fourth grader who comes to school flipping her hips in a short skirt, making goo-goo eyes at boys, wearing make-up, and being an excluding mean girl on the playground? They’re both thinking about sex — Jesse’s just being more direct about it.

Okay… way, way more direct.

But those are just a couple of the endless hypocrisies Jesse is grappling with as she takes in the world through her anxiety-addled eyes.

Last year a person I know vented to me about a girl in her kids’ school with Down Syndrome who had a habit of going around and touching other kids’ butts. This person felt that the girl didn’t belong in the classroom with other kids because of that one behavior. She was really upset that the girl’s parents had lobbied for accommodations and even sued the school to ensure that their daughter would be integrated into regular classrooms with assistance, instead of being shunted into a special ed room.

I was more upset by the speaker’s attitude than by the story. I didn’t understand her vitriol over this situation. I was with the parents. I approved of their advocacy and I think they were right. (I’m glad I felt that way, because now it’s my own Jesse engaging in disruptive, inappropriate behaviors.)

Lost my train of thought there… Right, so that’s what I was getting at: of course Jesse shouldn’t be asking boys to have sex or talking about penises at all odd hours at school. But disappearing her isn’t the answer. Understanding and helping her is.

And that’s why I want to talk about OCD, openly and without shame. I want to wear a giant poster board shirt and stand around on street corners. “MY CHILD IS AWESOME AND SHE HAS OCD.” Or maybe… “MY DAUGHTER HAS OCD. IT SUCKS. SHE DOESN’T.” I want Jesse to talk about it. I want her to own it and be grumpy about it and laugh at it. I never, ever want her to be ashamed of it, and I will disappear anything and anyone in her life who asks her to feel that way.

How could I possibly feel ashamed of Jesse for suffering from a mental illness? It’s not like it’s her fault. The only shame I feel is that, before I understood what was going on with her, I felt ashamed — because I thought she was just being a volitional jackass. I was wrong.

Instead of shame, these days I feel a profound compassion for my little girl, whose brain is full of horrifying, anxiety-driven images of misunderstood sexuality and violence, against her will and despite her best efforts. I wish you could see her at the end of most school days — the sunken and exhausted dark circles under her green eyes, her head hanging in shame, a feeling of failure leaking from her pores like an oozing pus. I wish you could hear her when she tells me that she doesn’t want other kids to laugh at her anymore. I wish you could see her deep, blank sadness over missing school activity after school activity because she can’t manage it.

And I wish you could see how much courage it takes for her to drag herself out of bed every weekday morning and prepare herself for five hours of Herculean struggles to achieve self-control. She rarely balks. She is an extraordinary child who is persevering through some truly horrible shit.

So I wish you wouldn’t shun her, dear world. I wish you would give her a break, and maybe even a hand.

I wish it was as okay for her to have OCD as it is for kids to have learning disabilities these days.