Let’s stop talking about Donald Trump’s mental illness (in defense of mental illness)

I’ve seen a lot of “Trump is mentally ill” articles and memes this election cycle. At first I found them entertaining, but then pretty quickly they set me to thinking.

In defense of my mentally ill daughter Jesse, let me just say these few things.

Suffering from mental illness doesn’t disqualify a person from holding a job with tremendous responsibility, not even the presidency.

Lacking self-awareness, avoiding treatment, having no control over your illness so that you hurt other people? Probably does, but in the same way that any human being, mentally ill or not, is generally required to behave in a responsible way.

Suffering from mental illness doesn’t turn a person into an unmitigated asshole. It can make a person appear to be so, but it usually isn’t true. Thanks to her Tourettic OCD and anxiety, Jesse blurts “the N word”, blurts inappropriate sexualized chatter, and says inappropriate things all the time; she often has trouble connecting with people in ordinary conversation; she has terrible mood swings and tantrums; she lashes out at her family regularly.

But she’s also a profoundly empathic, loving, thoughtful person who believes in justice and equal opportunity and charity and diversity and hope and love and all the other moral imperatives her parents have taught her.

When her OCD and anxiety don’t own her, she’s charming, supportive, and very bright. She’s curious about the world, and she asks questions with insight. She’s a model big sister, providing for her brother and entertaining him. She’s thoughtful with compliments to people who are mean to her. She forgives friends and family for shunning her or lashing out at her for behaviors arising out of her illness.

And here’s a thing.  She takes responsibility for herself (partly because we make her, but mostly because she just does). She doesn’t blame everyone around her. She apologizes, every single day, for the shit she pulls.

She is excluded from activity after activity when her behaviors are disruptive or offensive. It’s what happens when you’re not in control, and so we’re teaching her that she has to work hard to gain control. (With her family right by her side.)

She doesn’t think she’s so awesome and amazing that she’s entitled to entrench herself in bad ideas. In fact, she hates herself. (We’re working on that.)

She goes to therapy every week (sometimes unwillingly, but we’re there to prod her along). For a couple months last spring she was in therapy three hours a day, four days a week.  She’ll do it again starting this fall as she tools up for school. She’s preparing, fighting, learning. Changing and growing, and becoming increasingly self aware. (So am I.)

That’s what severe mental illness looks like to me. It doesn’t look at all like Donald Trump.

A significant mental illness is usually something you’re just born with. When it comes to judging a person, what’s relevant isn’t the illness — it’s what you do with yourself, with whatever talents and impediments nature imposed on you.

Indicting Donald Trump because he has a mental illness is a cheap play to the deeply entrenched social stigma that still attaches to mental illness, just as surely as the Donald played the race card on President Obama with that birther business. The person who pulls the mental illness card on the Donald is saying this: “Look, you and I already know he’s a jerk. He’s egocentric and narcissistic, he’s a megalomaniac, he’s ignorant and thoughtless and yadda yadda and all that, but it gets EVEN WORSE. This is all because…. he’s MENTALLY ILL!”

OH MY GOD, YOU MEAN HE’S NOT JUST AN ASSHOLE?? He’s mentally ill!! That’s so much worse!!!

But let’s be clear. Lots and lots of people suffer from mental illness and go right on about the business of being decent, well-adjusted, thoughtful human beings.

In other words, if you have a problem with Donald Trump, Hillary Clinton, or anyone else in this world, please consider talking about the things they do, the things they say, the way they carry themselves. You might consider exerting pressure on whoever it is you have an issue with, the way we exert pressure on Jesse to change, improve, apologize, and take responsibility. Or, barring that, to just go away. Votes can make that happen.

But please don’t play the crazy card anymore.  Please don’t throw my daughter into the same basket as Donald Trump. He is a uniquely awful person because he chooses to be, not because he’s a victim of mental illness.

OCD MASK

Twice a week at Rogers Hospital, Jesse joins the other kids in the OCD program for “experiential therapy” (the inevitable ET). I didn’t know what those two words together mean. It felt jingoistic. So I googled it and learned that it means doing activities that encourage the patient to identify and come to grips more indirectly with “hidden or subconscious issues.” Still felt jingoistic. I’m sure it’s more extensively thought out than I’m describing it, but basically the kids sit around and do stuff together — art, meditation, story telling, I don’t know, basket weaving.

Jesse’s first couple weeks, her behavior during ET was so outrageous that they booted her from it the third week. Our behavioral specialist (you got it, our BS) told me about the plan, and I remarked that this wasn’t going to go over well. Sure enough, when he told Jesse, she folded over in two and wailed, “OH GREAT I’M A FAILURE ALREADY!”

Excellent, excellent. ET in action, helping Jesse come to grips with all new levels of as-yet-unidentified self-loathing, with the  assistance of her trusty BS.

But she went back and has struggled on, week after week, yawping and interrupting through bouts of ET. A few weeks ago, the kids made “OCD masks.” They were each given a white paper mache mask to draw and color on, with instructions. Counterintuitively, the inside of the mask depicts how the child believes others perceive her. The outside of the mask depicts how the child perceives herself.

Jesse brought her mask home recently. Here’s the inside of Jesse’s mask:

IMG_2116.jpg

Jesse told me this is intended to show that others see her as “kind of crazy.” She doesn’t mean that in a pejorative way. She means something more along the lines of “kooky,” as in she likes to get goofy and silly, she likes to go a little crazy when she’s having fun, she’s got a lot of pent up energy. So she chose bold primary colors and sharp lines, to show that energy and craziness.

Here’s the outside of Jesse’s mask:

IMG_2115.jpg

I succeeded in not crying when I saw it; I saved those tears for later. I probably didn’t do such a good job of hiding how startled I was. We didn’t talk about it much. She pointed out that there’s a dragon at the top, on the forehead. “I think about dragons. A lot.” She told me she had explained to the other kids that she’s “kind of goth,” so that’s why she chose dark colors. That’s about as far as she was willing to go with me.

Tonight she came home from Rogers and it had been a pretty tough evening. She kicked the back of Anthony’s seat in the car several times on the drive home, and she spit on him during exposures. I was angry and depressed by that, and I gave her the what-for, including saying unnecessarily and cruelly that maybe she’s not ready to go on vacation to see her grandparents, a highly valued trip to the ocean which is coming up asap. She didn’t rage at me, which surprised me a little. She was calm, almost blank, as she picked up her mask and pointed at the outside. “This is how I feel right now, Mommy.”

You would think I would have followed the lead and engaged in a conversation. But no. Instead I said, I don’t care how you feel right now. I care how you act, because that’s what we’re working on, that’s what matters.

Needless to say, not long afterwards I felt like a terrible, horrible, no good, very bad mom.

Technically, I’m right. Cognitive behavior therapy, CBT, is mostly about changing behavior. For little kids especially, the cognitive aspect of this work is secondary. We don’t waste much energy on understanding why; we focus instead on changing how the kid acts, one exposure at a time. When the behavior changes, that circle of connection and causation — thought, feeling, behavior, thought, feeling, behavior — will start to change the why.

But I’m also wrong, and I’m ashamed. Tonight, when Jesse opened the door to tell me what her mask is trying to say, I shoved it closed on her.

I’m not sure why. Maybe I’m just worn out by a hellish year and almost two months of intensive therapy. Or maybe there’s a more hidden motivation. Maybe I’m not sure I can keep it together if Jesse puts into words the inchoate feelings her mask seems to express. I’m not sure I’m strong enough yet to be the unbending shoulder she needs to lean on as she faces those demons. They look awful. They look terrifying.They look so sad.

So I’ll just let this mask haunt me from the kitchen table for a while. Next time Jesse offers to open the door, I’ll try to let it open. She deserves that much.

 

Yay. It’s the last day of school. 

Today was the last day of school for my kids. I’m so happy I could cry. 

Hold on a minute. Just waiting for the tears to come. 

Waiting. 

Still waiting. 

Huh. Never mind. 

********

Jesse had the worst year ever.  it was undoubtedly a terrible horrible no good very bad school year. She didn’t even get to enjoy the simple pleasure of a half-day to close out the year — because every day of 4th grade has been a half day for her. 

When I picked Jesse up today, I also had to carry out two heavy boxes of her therapeutic materials. My biceps almost failed on the walk to the car. It was an apt reminder of how burdensome and challenging this year has been for our family. But we never gave up by pulling Jesse from school entirely, so I guess that’s something. 

I know I know, I’m channeling my Debbie Downer these days. Believe me, I’m well aware of it. I’ve lost my grumpy! How did it happen? How did I move from energetically grumpy to morose and self-pitying?  I need to find my way back to grumpy. 

I can’t believe I just said that. I’ve finally found a feeling worse than grumpy.  

Right, what? Oh, Jesse. Not only did she have a shitty school year, but she didn’t even get to enjoy a school-just-ended afternoon by settling down in a catatonic haze to enjoy marshmallows, ice cream, microwave taquitos, and a Sponge Bob marathon. Instead, it was right back to Rogers for another afternoon of therapy. 

Jesse is so exhausted from all this therapy. After working super hard to control herself at school in the mornings, she’s been passing out on the long drive to Rogers. It’s pretty cute. 


So this afternoon, instead of chilling out post-4th-grade, off we drove to Oconomowoc. I woke Jesse when we arrived, and in we marched to therapy. I displayed to her 3 x 5 cards on which I’ve carefully printed a variety of taboo words like


and


and invited her to resist really hard the urge to blurt those words. 

Good times. 

********

Nick, by contrast, had a spectacular year in kindergarten. He went through periods of shyness and he lacks academic self confidence, but he’s enthusiastic, cheerful, and hard-working (for a six-year-old). Plus he has fun with other kids. I can’t exaggerate how much of a relief this is, after Jesse’s rocky road through her wee years. 

Nick’s teacher says he is definitely ready for first grade. But I will admit: I don’t know what that means. 

Nick wrote this two-sided poem-like thing for Anthony a couple days ago:


If you happen to be having difficulty reading that for some reason, like if your adult intellect has been compromised by normal spelling and American English speech patterns, allow me to explain and interpret. 

In kindergarten, it’s all about phonemic spelling these days. Learn letter sounds, and then spell it like you say it. Nick is quite good at it. I’ll adjust a little on the letters to fix the reversals and mistakes; you just say what you read below, out loud, to sound like Nick:

“To dad, fu-womb Nick. Foe-st it wains, then it sews the sun. The wain-bow is made and the wain-bow is boo-de-fuh. 

“Oh-voe the mountain the wain-bow goes. Makes mow boo-de-fuh.”

I hope that makes things clearer. 

Meanwhile, I am to conclude that Nick is ready for first grade. Huh. 

Also next fall he starts speech therapy. 

********

That rainbow mountain poem will go up on our free art wall, which joins the kitchen area to the mudroom. 

I fancied fine art, made by local artists, in this beautiful open space. I came close. Our cracked post-renovation budget led me to hand a roll of scotch tape to the kids instead of browsing at local galleries. So… The artists are definitely extremely local, and then just replace “ine” with “ree” after the F. 

I admit though, I do like the child-populated art wall. The only troubling piece is this demented take on the Lorax:


That photo of Nick is larger than life-size, and what is with his bony forehead? I get the creeps when I walk too close to it. 

And I surmise that this is the kind of activity they do in kindergarten to get ready for first grade. 

Huh. Maybe Nick actually is ready. He certainly makes a formidable-looking advocate for the trees. 

*********

And of course, I went through the traditional parental entropy that accompanies the final weeks of school. Twice in the past week I simply forgot to make Nick’s lunch. Today, I offered him puffed Cheetos as his snack — a last-day-of-school treat, how awesome am I?

Nick actually balked, insisting on something more healthy. And I actually replied, “I’m not doing it. If you want a healthy snack, ask your dad.”

Anthony rummaged deep in high cupboards, well above my line of sight, and pulled a clif “Z bar” out of the kitchen’s apparent anus. I don’t even know what a Z bar is. Where did it come from, and when? My kids hate packaged bars. We didn’t deign to check for an expiration date. Anthony held it up on display, announcing in a firm and grim voice, “this is healthier.” He shoved it in Nick’s backpack without further ado. 

Then I promised Nick that, when I picked him up after school, I would bring his Kylo Ren light saber and a picnic lunch so he could play with friends on the playground. He’s wanted me to bring his light saber after school time and again all year, and I’ve never gotten around to it. I was determined to do right by him today. 

As it turned out, I didn’t have much of a picnic in me. I filled a water bottle and grabbed that blessed bag of cheese puffs. Done. In a final fail, I forgot the light saber on my way out the door. 

I’m still an awesome mom, because first I pretended I didn’t forget it, and then I pretended it didn’t matter (it did), and then I ignored Nick’s nattering and told him to go play. He’s an easy-going kid, so he swallowed his disappointment and seems to have forgiven me. I suffered no negative consequences at all for screwing this up for him. Hurray for me!

Now I can’t wait to spend a long summer with the kids, letting them down one way or another, hour after hour, day after day, and hoping to get away with it. Wish me luck.

gosh, intensive therapy for OCD and anxiety is fun

It’s been about a month since Jesse started going to Rogers Hospital’s intensive outpatient therapy program for children and adolescents with OCD and anxiety. Also known as IOP OCD CA. Or maybe it’s OCD IOP AC. OCD IOP CA? IOP OCD AC? AC OCD IOP? I’m not sure at this point; you’d have to go find an older post where I get it right. Small details like these don’t stay with me nowadays, because I’m practically catatonic by the end of each day.

Nick drew me recently — he sees to the heart of things, with the deep emotional insights a seven-year-old is still capable of having:

IMG_1899

Very accurate, except I’ve put on a lot of weight the last few weeks, and I don’t think I smile so much lately. I’m glad he drew me slim.

* * * * * * *

We’re at Rogers 12 hours a week, but one thing has become abundantly clear to us:  when a person has fallen into the clutches of a severe episode of anxiety or OCD, therapy never ends. You are literally always in the heart of therapy except when you’re asleep.

Everyone has skin in the game, from school staff to Jesse’s classmates to her family to random kids who step into her blast zone. Last Friday I overheard Nick explaining to a few kids on the playground that sometimes Jesse says inappropriate things. “Then we have to just ignore her and not get angry.” Jesse was in hearing range; she handled this accurate kid’s-eye-view really well. It is what it is.

Every waking moment requires vigilance of Jesse, a constant tracking of her thoughts, feelings and behaviors, as she struggles to understand when word blurts and obsessive thoughts come and go, and as she tries to identify the sensations in her body and mind that precede negative bursts — the premonitory feelings, to use the OCD/tic term of art.

Every waking moment requires parental vigilance as well, as we track and monitor our own behaviors, identify times when we could do a better job of cuing Jesse up so she can create successful moments, and fight with her to keep her going with therapeutic work.

It is utterly exhausting for Anthony and me as parents, and I can only imagine how much worse it is for Jesse.

* * * * * * *

Our basic therapeutic tools are a timer, a ban book, tracking sheets, something called a “STOP” sheet, coping cards, a competing response, and will power.

The STOP sheet is a really effective piece of the puzzle, despite the goofy kid with a bad haircut, a dorky crosswalk outfit, and… what are those, puffy socks in lieu of shoes?

stop sheet picture

This exercise forces the writer to separate feelings (and the body sensations that accompany them) from thoughts, and then to come up with positive alternative thoughts and forward-looking ideas. It’s surprisingly hard to separate feelings and thoughts. For instance, “I’m angry” and “you won’t let me…” get entwined in a child’s mind (and in many adults’ minds, I think). Separating them seems to be one of those tricky tricks of cognitive therapy that helps you work through whatever strong feelings are going on in your body, whether it’s depression, anxiety, full-on phobia, obsessive thoughts, or whatever.

The ban book is a little book where Jesse records how things are going with her banned behaviors (those pesky compulsions). She jots down hashmarks indicating whether she has “submitted” (S) to a compulsive urge  or “resisted” (R) it, and whether she has engaged her “competing response” (CR) to fight against urges. The goal is to make that “S” number small and the “R” number big. Barring that, at least you want to see a big CR number. Accountability is enforced at Rogers, where the kids in the program collect at the beginning of each day to share their numbers. Zoinks.

The timer and tracking sheets are very technical tools. Jesse does a series of exercises every day that take a total of about two to three hours, depending on whether she’s having  a good day. She does two-minute drills where she sits in a public place and mindfully holds her competing response in full — sits up straight with her ankles crossed, her hands clasped, and her lips clamped shut — while taking deep breaths and paying attention to how her body feels in its stillness. If she can’t keep it up for two minutes, she starts over. Sometimes it takes 15 or 20 minutes to get through one successful two-minute interval. (I dare you to try it – two minutes is a long time to sit in total stillness.)

She looks at coping cards which describe difficult situations, imagines herself in those situations, and then practices the skills she’ll use to cope and contain her behaviors.

She stares at taboo words and runs the timer while she fights the urge to blurt them; she stops the timer when the urge has passed.

She stares at photographs of kids with different skin hues and runs the timer while she fights the urge to say racist words and weird racial riffs, until the urge has passed.

For most of these exercises, she records the amount of time it takes for her to win, as well as her starting and ending anxiety levels. This creates a positive feedback loop and, hypothetically, some accountability and competitive desire to improve.

Sometimes Jesse is truly terrified when we begin these exercises, and sometimes she’s just royally pissed off. Who can blame her? She doesn’t want to see  images and words that’ll bring on her worst behaviors and give her panic attacks. She doesn’t want to sit in public places, full of anxiety and obsessive thoughts and an emotional certainty that she’ll fail. If we could turn the amount of energy she’s using during these exercises into fuel, she’d be able to send a rocket to Mars.

It’s hard to be the parents sitting next to her as well. On the one hand, we have to demand that she comply with this exercise regimen, that she fight. That’s a parenting issue, and it hurts. It hurts to force your child into a state of high anxiety on purpose, in order to develop the skills and strength to fight that very anxiety. On the other hand, we’re supposed to present a patient, blank, neutral face in response to compulsive behaviors, however outlandish or offensive they may be. Because we can’t parent away the mental illness; there’s no amount of discipline or punishment directed at the disease that will fix it.

This balancing act is impossible. Anthony and I fall down all the time. We’ve begun to use the “STOP” sheet approach to challenge our own feelings and thoughts, and to find a way to separate the two competing needs. I’m not sure it’s helping. I think we’ll just keep screwing it up until Jesse gets better, and she’ll have to just get over it someday.

* * * * * * *

That’s just the surface. I could go on and on and bore you even more than I have already. There are so many ways this approach to therapy sucks. It sucks sucks sucks in the same way PT after a knee replacement sucks. It’s just pain and suffering and a black hole sucking up all our free time and emotional energy.

But here’s the thing: I think it might be working. Jesse has probably smiled more in the last two weeks than she did from September to April. She’s peaceful in the morning when she wakes up. She’s able to play with Nick again. We actually drove somewhere as a family last weekend and she didn’t explode in the car. We’re starting to have fun together as a family again.

Sometimes, she actually doesn’t seem to hate herself.

Every once in a while I remind her that when she does these exercises from Rogers, she is literally re-wiring her brain. Neuroplasticity is this phenomenally empowering concept that helps explain how a person can be physically tired after doing a bunch of mind work. Jesse’s brain is in overtime, using up all sorts of proteins and nutrients and oxygen and whatever to change itself. It’s pretty exciting. To me, anyway. Jesse usually just glares at me when I go on about it.

Is Jesse able to go to school successfully and exercise control there? Of course not, not yet anyway. But she’s working toward that goal, and we have new and more effective tools to bring with us into fifth grade so that she can get a stronger start.

Does she have friends? Of course not, not really. It’s been hard for her to connect with people past all the intrusive thoughts and fears that crowd her mind. No playdate or birthday party invites for my little girl. Her same-grade friends dried up and moved on long ago, with no explanation to her or me. So it goes with mental illness. But does it seem to be killing her? Not right now, at least on the surface of things. Her classmates have sustained her with kindness and tolerance in the classroom; we’ll take it and be thankful for what there is.

And that’s where we’re at after a month of intensive outpatient therapy. I think maybe life doesn’t suck as badly as it did. The entire curve has shifted. The bad days aren’t as bad as they used to be; and the good days are better than they were.  I hold onto that these days, when Jesse’s compulsions burst out of her like an exploding septic tank. It’ll do.

 

 

 

Ten things that must be better than therapy

This outpatient therapy Jesse is going through sucks. It hits her right where she hurts the most, and it’s a raw, exhausting, emotion-provoking process. I think it’s the emotional equivalent of what a burn victim survives — dead skin and hardened scabs painfully scrubbed and peeled off to expose fresh raw skin, day after awful day, and a mirror waiting to haunt you as you try to re-discover what’s beautiful under the scar tissue. There is no escaping it if Jesse wants to get better.

Also it takes us out of commission from 2 to 7 pm every Monday through Thursday, when you consider the nearly-hour-long commute each way to the clinic. So I really don’t get to spend any quality time on those four days with my little Nick, who is a delightful, easy-going little guy who serves as an important pick-me-up in my life.

Suuuuuucks.

Sure, I’m already seeing glimmers of hope for Jesse with each new day — some baby steps toward control over the obsessions and compulsions, passing moments of relaxation and happiness, a re-engagement with some simple pleasures in life. Like digging for worms to feed the robins nesting in our front yard. Jesse did that by herself yesterday evening when we got home from the clinic. It was a sweet and peaceful thing to see, something I’ve missed with a deep ache.

Still. I can think of a lot of things that probably would be more fun than therapy right now. Like…

1. Working out or going to tae kwon do classes.

2. Cooking fresh meals that contain actual fresh vegetables.

3. Going on a five-hour hike someplace beautiful, without bringing a timer, a motor activity box, or a submit/resist/competing response log.

4.  Going to an art museum. Without children.

5.  Doing all the home improvement tasks I’d been putting off – a couple tables to plane and refinish, some drawers and shelves to build into 5 closets, all the interior wood trim to varnish, some re-leveling and tile to lay on the front porch, a 3-foot-tall retaining wall to build in the back yard. You know. Little things.

6. Washing my family’s underwear by hand.

7. Going to a local chiropractor with the lowest possible rating on Angie’s List for an adjustment.

8. Beating myself senseless with large sticks from the back yard.

9. Eating a bowl of Japanese beetle larvae raw.

10. Cleaning the men’s toilets at all McDonald’s locations in Milwaukee.

Just sayin’…

 

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 securities 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 musthide 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.

IMG_1896

It is named, inexplicably, Ricket.

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 call bullshit on it.

It took my breath away.

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 call bullshit 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.

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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

 

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.