Yule log

I made a Yule log. Why, you ask? Because cake, whipped cream, chocolate frosting. 

By making all of it look like a dying plant, I make it Paleo. 

I baked a thin chocolate cake. As instructed, I rolled it in a powdered-sugar-coated dish towel to cool. I made a whipped cream filling, with a bit of insty-vanilla pudding thrown in to make it more sturdy. I made a thinnish chocolate frosting. 

I have no photos of these separate pieces because I was covered in muck and desperately cleaning up after myself so the kitchen wouldn’t look like a health hazard. 

So then I unrolled the cake when it was cool. I’m not sure what was supposed to happen. Was it supposed to remain of one piece?

That was not my reality. In fact, the cake fractured. It looked like the surface of a melting glacier, or a sere sandless desert, or the skin on my heels after a long winter. A bunch of crumbling strips of cake. 

But I’m industrious and simple minded. So I blithely spread the whipped cream stuff on the strips and tried to reform the cake strips into a roll. I thought I’d be able to roll it up and strip off the towel easily, like I was making a giant chocolate-cake-whipped-cream sushi roll. But I guess I didn’t sprinkle enough powdered sugar on the towel. I had to work very hard to get the cake separated from the towel. It was a brutal affair. 

But I managed. I cajoled and mauled that cake into a roll. I smashed it all together with my strong, firm hands. Then I slathered it in chocolate frosting. 

I didn’t make enough frosting. I didn’t know the log would be so huge. Still, I did the best I could. I just smeared it on until it was all gone. The ends and the bottom parts near the plate were bare. I figured it just made it more realistic, like a tree rotting in the woods.  I scraped the frosting with a fork to mimic tree bark, and then for authenticity I sprinkled it all with powdered sugar for snow. 

It is a giant pile of smooshed together chocolate cake, pudding-ish whipped cream, and chocolate frosting. 

Kinda pretty: 


Okay, no. That’s just the magic of a distant cheap shot on my phone. Up close and person? It looks like I dropped it:


Not for company.

 But in my mouth, it tastes fine, just fine. Nom nom nom nom. 

Gifts

In a year of relentless negativity and and awful political developments and terrible suffering in places like Afghanistan and Syria, a celebratory holiday season feels like a non sequitor. Look at all that’s gone wrong this year — an ugly divisiveness that permeates our culture, wars and strife and growing xenophobia around the world, the rise in a foul noise of white nationalist racism, the ascendancy of a madman to the presidency despite his firm rejection by a majority of voters, my daughter’s own terrible struggles with physical and mental health issues, my husband’s miserable year of gout attacks, months of ongoing sickness in our house since August, my mom falling and breaking her leg just a couple weeks ago.

What’s there to celebrate?

Still, I can’t help but see gifts all around me this time of year, because I’m looking for them. We are a family that celebrates a secular Christmas, regaling our children with shamelessly excessive Christmas lighting and decorations and shamelessly abundant gift-giving and shameless overeating. But we all know that the greatest gifts aren’t the money in our pockets or the trinkets lining our walls; they’re the little things that stick in our craws.

* * * * *

A classmate joins Jesse for school lunch regularly, even though she still eats separately in a quiet room in the school offices. I’m pretty sure he’d often rather be in the cafeteria with other friends, but he eats with Jesse day after day with few exceptions. I don’t know why he does it, friendship or love or kindness or decency; but I know it’s a lifeline for Jesse.

Then another classmate unexpectedly joined Jesse for lunch last week. I asked Jesse how that came to pass. She replied that this little girl had asked to eat lunch with Jesse, “because her mom told her I might be lonely so she should do that.” As Jesse told me this, a smile burst onto her face and she skipped around the room joyfully for a few seconds. It almost ripped a sob out of me.

(I controlled myself then but now I can’t, so give me a minute here while I deal with this dirt in my eye.)

* * * * *

There’s a smallish group of parents I share time with on the elementary school playground now and then, after school lets out. It began as just an easygoing collection of parents who share a simple value — kids should have time to play — and it has evolved into what I believe are true friendships among the parents as well as the kids.

This year, I had a lot of need for child care. Nick needed a place to go as I carted Jesse around to doctor’s appointments and intensive outpatient treatment at the mental health hospital. My merry band of after-school friends stepped in. There was always a safe place for Nick, someplace where he knew he matters as much as Jesse. There still is.

And sometimes folks will even let me have their kids over. Bonus.

* * * * *

We went to a new psychiatrist this fall for Jesse, a doctor who has a very intense interest in whether auto-immune conditions are the root causes of mental illness. I went along with her suggestion that we do a ton of bloodwork to explore these issues, though I have tremendous skepticism. The science is still out.

I’m sure this doctor gets a heavy dose of grief from the medical community for her intensity, but she just keeps soldiering on and learning as much as she can. That bloodwork she ordered may or may not have exposed some ongoing auto-immune issues, but it did identify Lyme disease. And I have to say, since Jesse was treated for that, stuff has been getting better. A lot better. Maybe Jesse has had untreated Lyme disease for a really, really long time. Out of all the doctors and experts we’ve seen in all the gin joints in the greater Milwaukee area, this one psychiatrist’s fishing expedition found a really important treatable problem in Jesse.

* * * * *

A couple weekends ago, we went to a colleague’s party in the evening, kids in tow.  There was plenty of food, but almost nothing for Jesse because of her egg allergy.  The cookies all contained eggs. There were deviled eggs. There were dips with unknown ingredients. There was a giant chocolate cake and she couldn’t have one bite of it. Jesse handled it as graciously as she could, but it was a pretty pitiful little girl who walked out of that house at the end of the evening.

Last week a playground dad told me he wanted to make egg-free holiday cookies for us. I thought that was really nice, and it passed through my mind that this would be a good antidote to the party. I told Jesse he would be making egg-free cookies for us, and once again she skipped around a bit as a happy grin exploded onto her face. Then she stopped suddenly and stared at me, a puzzled look on her face. “Why?”

I didn’t know quite how to answer that. Because love and friendship and kindness and inclusion? I don’t know what motivates people. When I got the dish of cookies, I was startled to see that this friend had made four different types of egg-free cookies. Anthony and I shook our heads and picked dust out of our eyes. That’s a whole lot of love and friendship and kindness and inclusion. (Also, the cookies were delicious. Bonus.)

* * * * *

Jesse has been having some really great days at school. On one of the first of these days, about a month ago, her teacher gave her a little pendant. It’s a little piece of rough-beaten metal, and engraved on it is this: “brave is beautiful.”

Jesse told me that she almost cried when her teacher gave it to her, and she didn’t know why. I think I know why, but I didn’t say anything as I brushed those bits of dirt out of my eyes.

* * * * *

In this down year, I have been picked up and dusted off again and again by friend and family and stranger and colleague. I can’t tell all the stories without being a bore. As I rifle through the memories, I can only reach one conclusion: people don’t suck as bad as I think they do. If we could just keep giving each other simple gifts, maybe together we can hold onto enough humanity to keep going, and we can build that humanity into a wall of courage, and we can take that wall and push it up against all the ugliness that’s trying to rip our world apart.

 

 

this is what well-managed Tourettic OCD looks like (I think)

I’m hustling around the kitchen doing weekday morning things. Coffee, tea, toast, meds, cereal, sausages, tortillas, yogurt, chopped peaches and oranges, leftover taco fixings, balogna, cookies, snacks, and so on.

In the midst of my personal hubbub, Jesse says something.

“I pulled down my pants in the hallway yesterday.”

Oh.

No need to stop doing what I’m doing; we know this is a tic, maybe based in obsessions and maybe not, but it doesn’t really matter.  “Did you feel good about yourself afterwards?”

“No.”

“Were you embarrassed?”

“Not really. There was no one around.”

“How did you feel?”

“Relieved.”

“Would you have done it if anyone was around?”

“No.”

“What would you have done instead?”

“Controlled it.”

Awesome kid, I think. I mention something about all of this showing really good judgment and really good choices.

That’s right: I tell my daughter she made a good choice by pulling down her pants in an empty hallway at school.

Then we chat about how this is pretty much the same issue as picking your nose in public.

* * * * *

There was a whole lot of shit going down in that little conversation.

One, it was a rare example of me actually getting it right as a parent (I think). My heart didn’t flinch or cringe when Jesse brought it up, and I think I didn’t over-react. I didn’t feel sad or angry or unhappy. It felt like simple information-sharing. I remembered that Jesse was telling me about it because she needed to share, not because she was rubbing it in my face. I asked questions instead of nattering.

Two, Jesse was articulating very clearly what it feels like to vent a tic or compulsion (I think): RELIEF. I use a lot of analogies to explain it, depending on my audience. Like holding in a fart or a burp that’s just busting to come out, or even worse, like holding in the loosie-goosies when you’re standing in a long line at the store. Like needing to stretch that crippling cramp in your thigh. Like trying not to cough when you really have to. Like not crying out in pain when someone closes a door on your finger. Like not blinking. Like holding vomit in. You can do it for a while, but in the end the only relief is through release. You gotta let that fart out eventually, whether it’s a silent-deadly or a Wagnerian ripper.

Three, Jesse was describing in miniature a healthy balance between control and relief (I think). A little person with tics and obsessions can’t always control them. It’s just too much. So she has to let them out sometimes, or else she’ll be swallowed alive by the effort at control, and the obsession will fill every fiber of her body right down to the sub-cellular level, and then there’s just no hope. The only question is whether the release happens in a safe place  and in a safe way. Jesse made that happen yesterday, all on her own.

* * * * *

Shortly after our little chat, Jesse left for school. I didn’t send her off with a hortatory, finger-wagging lecture about self-control and competing responses. I am so sick of that shit right now. Instead, I sent her to school with a kiss on her forehead and a Christmas cookie in her hand. She was grinning, and I can’t wait to see her when I pick her up this afternoon.

Maybe she’ll pull down her pants today again; maybe she won’t. Maybe she’ll make it to a safe place; maybe she won’t. But I know she’s trying, because she told me so and I actually listened. That’s pretty outstanding for an eleven-year-old kid and her fifty-year-old mama (I think).

 

 

The IEP meeting didn’t suck

I attended Jesse’s IEP (“Individualized Education Plan”) meeting yesterday. It was such a great way to start the week. Who doesn’t look forward to an IEP meeting on a Monday morning?

Jesse qualifies for an IEP and special ed intervention because of “emotional and behavioral disturbances,” or EBD. It’s a cruel set of words, a sorry label to bear in order to get necessary support, a vicious artifact of the continuing stigma attaching to mental health issues.

I can’t imagine describing someone with a physical disability these days as having, say,  “mobility disturbances.” How about “intellectual disturbances”? “Attentional disturbances”?

But as far as I can tell, it’s the label we have to attach to Jesse in order for her to qualify for assistance through the special ed system.

What Jesse does have, before we reach for the EBD label, is some specific — albeit broad — mental health challenges. Generalized anxiety, probably depression, OCD, Tourette’s or tics.

We have to call them mental illnesses, because that’s how the DSM describes them. I would love it if we could label at least the OCD or the Tourette’s a developmental disability. It seems to be a lot easier to get support when you have a “disability” than when you have a “mental illness.” I’ve been whining about this for a while now, and I admit I’m getting tired of myself, but let me get it off my chest again. Jesse’s disorders have a lot in common with autism and ADHD — stuff like disinhibited behavior or impulsivity, social miscuing, getting stuck, obsessive thinking, repetitive behaviors — and it’s not a newsflash that there’s a lot of co-morbidity.  But two are called developmental disabilities and two are called mental illnesses. A DD is a better passport to services than a mental illness, so Jesse didn’t hit the right jackpot.

Instead of saying EBD is how Jesse qualifies for support, I would rather say almost anything else. I would rather see a category called “pain in the ass (PITA).” I would rather see a category called “belongs to Crazy Nation (not otherwise specified) (BCN-NOS).” (I would pronounce it “bacon nose.”)  I would rather see a category called “drives us crazy (DUC).” I would rather see a category called “jaw-dropping inappropriate behaviors (J-DIBs).” I would rather see a category called “what the hell happened to you?? (WHY).”

Jesse has had anxiety and OCD since she was a wee little thing, but it’s only when she fell off  the cliff behaviorally that she qualified for an IEP (or at least, before we thought about getting her one). That’s lame. EBD my ass.

* * * * *

I’ve gone off the rails here. I’m supposed to be talking about Jesse’s IEP meeting. Right. So this year I did something I’ve never done before. I filled out a “positive student profile.”

This whole “positive” thing is not something that comes naturally to me, and I’ve always found it strange to plan on going into an IEP meeting with the mindset of talking about how awesome the child is. The only reason we’re there is because the child is not so awesome, right? Because there’s something not going right, something that’s messed up, some failure or flaw that’s making the child so unsuccessful at school that she needs intervention. In that context, what’s the point of talking about all the good things that don’t require intervention? It feels like hot air.

In other words, I’ve been an incredible stinker in IEP meetings.

But I finally gave in and wrote a positive profile. It was so hard. The questions on the form I decided to use were so broad and banal. Who is Jesse?  What are her strengths? What are her greatest challenges? What are our hopes and dreams for her?

It was like walking into a bad interview.

But I gritted my teeth and  got to writing. As I wrote, I noticed that these human questions — so different from medical inquiries — were driving my language in a different direction. It wasn’t just semantics. I found myself thinking  about Jesse not as a diseased child, laboring under the behavioral challenges of mental illness, but as any other little person trying to make her way through life.  I found myself spending very few words on the disorders giving rise to her IEP needs.

With Jesse’s input and guidance, I wrote this in response to the question, “Who is Jesse?”

Jesse is a typical kid who wants friendships and connection. She wants to be part of the community and experiences her classmates share. At the same time, Jesse is profoundly independent. She is exactly who she is, and she isn’t inclined to change her interests, her looks, or her behaviors just to please others and fit in. We love that independent spirit.

Jesse has always been full of curiosity and a deep sense of wonder about the world. She loves to be outdoors — to feel mud between her toes, dirt under her fingernails, sea salt in her hair, and snow drops on her nose. She has always loved the wind. Even as a newborn, she would lift her face to a gale wind and close her eyes in pure delight. This simple delight in natural experiences has never changed; Jesse learns through real sensory experiences. She learns best through application — not just by rote or in a book, but experientially through observation and contact.

Jesse sees herself as an explorer, an artist, a writer, and an earth scientist. She likes to be silly and to make other children laugh. She is a thoughtful and kind big sister, who has always shared her life, her time, and all her stuff with her little brother, with an open heart and few regrets.

I set it aside and came back to it later in the day. It felt like a goofy puff piece, a sophomoric and one-dimensional description of my complex child. But I realized too that I was setting the stage for a conversation with Jesse’s team at school — a conversation that should start with who she is and what she needs to inspire her, not a conversation about the educational establishment’s needs. And frankly, I kind of liked this vision of Jesse. She’s a pretty cool kid.

Maybe the positive student profile wasn’t such a stupid exercise after all.

When I got to the question about Jesse’s greatest challenges, I gave her carte blanche to identify them for herself. She didn’t hesitate, so it was pretty clear to me that she’s been thinking about this a lot. One, she wants to be able to eat lunch in the cafeteria with the other kids. Two, she doesn’t want to need help anymore; instead she wants to be the helper.

It occurred to me that this was a sea change in our conversation. For more than a year, our big-ticket goals have been almost exclusively about symptoms of her mental illness — reducing tics and submission to obsessive thinking, controlling her body and mouth, feeling and expressing less anxiety. These changes in behavior certainly matter, but they had swallowed us alive and become an end in themselves, without reference to the general quality of Jesse’s life.

But Jesse’s articulation of her challenges reflected her basic human needs for inclusion and community. She nailed it. Eating lunch in the cafeteria is something Jesse has never done. The clamor, the social complexities, the yelling cafeteria monitors, Jesse’s fear that she’ll screw up behaviorally, and her terrible phobia about having contact with eggs and dying (real and severe allergy, but exaggerated fear) — it’s a lot for her to deal with. But she’s missing out on one of the only communal moments in a school day, which is not a small thing, and it would do her much good to be able to join her peers for a meal every day. And replacing her own neediness with someone else’s was an extraordinary proposition, one that left me with tingles. My child is telling me she’s ready to be the boss of herself, and built into her idea is the profound insight that she can do that best by supporting others.

I told my brother Mark about Jesse’s wishes. His reaction was harsh. “She doesn’t eat lunch with her classmates??” I felt defensive and I explained that it’s been her choice all along. Sort of. Anyway, after I stopped sputtering about it, Mark pointed out the basic truth of Jesse’s goals. “Jesse wants to make friends,” he remarked. “That’s great!”

The last question on the positive student profile asked about “our dreams” for Jesse in the short and long terms. Uuuugh, such a horrifying question. But I went at it anyway. I felt like a sledge hammer:

In the short term, we would simply like Jesse to be able to attend school full time without being overwhelmed by anxiety and tics and self-loathing. We believe that when this happens, she will blossom into academic achievement and social success.

In the long term, we envision Jesse pursuing an independent, brave life. She values her ability to stand up for herself and others, and she dreams of eventually finding a job where she can help people and animals. While these are the simpler dreams of a child, we hear her saying in a broader sense that she dreams of being a champion and advocate for those who cannot speak for themselves. We believe her own experiences in facing the challenges created by her invisible disabilities will empower her in this journey, if we let them.

So dopey. Sooo not cynical. Sooooo optimistic.

Sooooooooo not me.

Except it kind of is, I guess. I do believe every word of that. I’m just not used to saying it out loud.

* * * * *

Being a very pulled together parent, I finished writing this positive student profile thing the night before the IEP meeting and emailed it out to Jesse’s team at school. A little late. I brought a copy to the meeting the next day with a photo of Jesse attached, just like the form told me to do. (See? I can be compliant sometimes.) I picked this photo, because Jesse is outdoors and happy and sassy:

IMG_2218.JPG

Jesse liked the pic, but she was startled as she looked at this sun-kissed face. “Where have all my freckles gone??”

 

You live in Wisconsin, my friend. There are few freckles to be had in winter, and even less vitamin D.

Writing the profile flipped everything in my mind as I went into the IEP meeting. I didn’t walk in with the question, “How do we fix things?” Instead, I found myself thinking a whole different set of questions, in which Jesse was the client, not the victim nor yet the criminal. How do we serve Jesse’s interests? How do we maximize her experience? How do we accommodate her needs?

I had planned for some debate and possible conflict. Is what you’re proposing meant to serve Jesse’s needs or institutional needs? Can we stop calling Jesse non-compliant and defiant? Because those are kind of dirty words in the disability community. Is what you’re proposing respecting Jesse’s dignity and humanity?

I was prepared to advocate loudly for Jesse on these issues, but I didn’t need to go there. It turned out, Jesse’s team was already there with me. It  turns out that, as soon as I started whining about the over-therapying of her world last month, everyone made the U-turn with us. I got the feeling they were as relieved as me to stop using the stinking timer, stop demanding regimented responses, and start letting Jesse move about the world by herself, without an aide sticking to her six.

At our last team meeting, there had been much discussion of Jesse’s non-compliance and defiance. This was the same time when she was bottoming out at the tic clinic, and I had mentioned then to everyone that we might be taking her to a new therapist to explore the oppositional issues. In yesterday’s meeting, I admitted we hadn’t followed expert advice after all; in fact, we had backed off therapy completely. I said, somewhat pointedly, that we had decided to be non-compliant.

Jesse’s teacher smiled, winked at me, and gave me a thumbs up.

And it was all easy street from there. I learned that Jesse’s behavior is improving steadily, along with her mood. Our discussion revolved around the successful venture of giving Jesse back her dignity and her power to choose. Yes, we talked tangentially about her tics and emotions, and how best to manage them, but it wasn’t a bitter pill. It was just one part of her story.

Everyone is excited for Jesse. She is demonstrating real behavioral change. Maybe things won’t suck so bad for her in the months ahead.

The teachers on Jesse’s team — every one of them a warm, rich-hearted woman — looked optimistic and energized. They seemed well-pleased that they had been able to get rid of the weird interventions proposed by Rogers hospital; or perhaps more accurately, they were well-pleased that I had stopped insisting they use those interventions. Eek. They were back in command, doing what they already know how to do, which is to offer children in their care kindness and dignity.

I realized, as I looked around the room at that happy team, that it hasn’t just been Jesse regaining some of her dignity during the past month.

I grossed my mama up

I’m sitting on the sofa with Nick before school. I’m an amazing mom, so he’s reading a chapter book to me while a late Beethoven string quartet plays quietly in the background. There are no pictures in the book; I like to encourage him to use his imagination. To improve his sensory balance and help keep his voice moist, he’s sucking on a homemade rosemary-lavendar lozenge, and he has a glass of lemon-vinegar water nearby to sip at. I’ve dabbed some homemade essential oils behind his ears as well, which I made from harvested and dried black-eyed susans, echinacea, and wild leeks that grow in our yard.

As I listen to Nick read, I’m knitting a brushed organic cotton baby blanket in an open lace pattern while slowly flipping through a large print collection of French impressionists on my lap. In moments like these, we practice mindful breathing and good posture, so I’m in the lotus position. That print collection fits perfectly in my lap.

?

HAHAHAHAHAHA.

I don’t think so.

* * * * *

I’m sitting on the sofa with Nick before school. He’s playing a battling game on his iPad. I’m checking emails and browsing Facebook on my phone. We are slouched down so low that our spines are shaped like the underside of a Viking boat, and our heads are bent forward at the neck at ninety-degree angles. I’m doing coffee bongs.

I look over at Nick and think to myself how cute he looks, so I mutter, “I love you, Nick.”

Nick looks back at me and snickers.

“Mommy, I have something to tell you that is really, really gross.”

I don’t speak. I feel anxiety right at the roots of my abdomen. I’m not sure I want him to continue.

“Do you want to hear it, mommy?”

“Not really.”

“Okay, so when I was playing in the snow at school — this is so gross!”

He giggles for a few moments while I wait.

“I picked up some snow… And there was GOOSE POOP IN IT!  Isn’t that so gross? Don’t you think that’s totally gross?”

I do. I think that is totally gross. All I can articulate, however, is this: “Uuuuuuugh.”

I’m thinking hard about the gloves I’ve been touching repeatedly this snowy weekend.  The gloves that have played with goose poop.

“So then I said, ‘AAAAGH’ and I dropped it! And then I wiped my gloves off and kept playing. Does that gross you up, mommy?”

I finally find speech. “Yes Nick, that really grosses me out. That is so totally gross. It’s disgusting.” I make a gross-out face. I’m not faking.

Nick is suddenly cheerful and extremely giggly. He starts bopping in place, his head swaying back and forth like a hippy as he chants melodically, “I grossed my mommy up, I grossed my mommy up, I grossed my mommy up…”

I listen for a few minutes before stepping in. I speak clearly and didactically, because I have a job to do as Nick’s mom. “We don’t say gross mommy up, Nick. We say ‘gross mommy OUT.‘”

Nick nods cheerfully and ignores me. But at least we’ve started the day out right with a lesson in proper use of idiomatic speech.

I’m an amazing mom.

Grumpy truths I told myself today. 

Sometimes you have to tell it to yourself straight, and these random thoughts crossed my mind today:

I will never figure out how to use the f*#%ing telescope we got Jesse for her birthday six months ago. At least, not if I keep relying on the hopelessly terrible instructions that came with it. 

I have no idea what to get the kids for Christmas. They’re so worn out by all the shit of this consumer age that they’re refusing to write Santa a letter demanding anything. Nick says, “let him decide.” I say, “why do you think Santa is a man?”

I am seriously middle-aged. There’s just no amount of fitness or weight loss that’ll make me pass for a young-ish hottie ever again. It’s “pretty old hottie” at best, from here on out. But I think I still need to fight for that, because I think rating women based on their youthfulness and physical beauty may be part of the first omnibus moral legislative plan proposed by the P-elect-OTUS. 

I think Jesse has figured out Santa is a fiction created by her parents lying to her on and on, one lie after another, for her entire life. I think if I tell her now that Santa Claus is “real” (I would qualify the meaning of that word in my mind like Bill Clinton qualified the meaning of “is”), she will react to me exactly the same way Trump is reacting to evidence that Russia played our elections like a cheap violin (“I don’t believe it”), and this will cause a cascading disaster of cognitive dissonance and self-loathing that will render me useless. 

Jesse’s mental health issues aren’t caused by Lyme disease, gluten, or vaccines. Or by my lies about Santa. But all these things probably don’t help. 

Donald Trump will be our next president for four or eight years. Noooo, there won’t be a re-vote, my optimistic friends. Noooo, the electoral college won’t flip, my delusional friends. And noooooo, the Republican congress won’t impeach him, my living-a-waking-dream friends. 

All of Trump’s cabinet picks will be approved by the Senate. We are fantasizing if we think petitions and letters and phone calls will make a difference. Three million votes didn’t make a difference. Why would three million phone calls?

A single political party that does not have the support of a majority of Americans nationwide now holds literally all majority power at the federal level, and is gerrymandering its way into the same sort of thing at the state level. Its presidential candidate won the election but lost the vote by almost 3 million voters. Still, this party is claiming a mandate to pursue positions on significant human rights and other policy issues that are not supported by a majority of Americans, and it clearly has no intention of pursuing any sort of conciliation. 

But people keep telling me I live in a representative democracy. 

I don’t believe it. 

grumpy about growing up

My mom fell a couple days ago and broke her femur, up near the socket into the hip. Yesterday she had surgery to fix the bone up, something ornate involving pins. I was thankful it didn’t need to be a full hip replacement, but I’m very worried about how recovery will go. I live thousands of miles away, and there’s very little I can do except show up for a few days and give my brother Mark — he lives close by and will be Mom’s primary caregiver during recovery — a brief break. It’ll be little more than a symbolic gesture.

A friend of mine was telling me about her dad’s heart issues which came up earlier this week – something about his heart rate dropping too low while he was driving so he passed out and got in a one-car accident. No one was hurt except him.

Another friend’s mom has some respiratory and cardiac issues, and she was so very sick last week that there were some distant question marks.

My step-dad had a stroke last year, and Mom broke her hip (the other one).

My in-laws have had a hip replacement, a shattered shoulder, shoulder surgeries.

I could go on and on with the anecdotes. Body parts don’t hold up as well when you get older, even in the face of a very healthy life.

At fifty, my peers and I are facing the ending days of our surviving parents lives (and never mind that some of our parents have died already). It’s just one thing after another as we bring it in to the finish line.  And as my mother gets older, I find that my reaction to her suffering has moved away from a child’s fears — will mommy live? — toward more parental feelings.

After Mom fell earlier this week, it was hours before Mark learned what had happened and called 911. It ripped my heart apart to think of her suffering like that, her femur broken to pieces right at the pelvis. I wanted to be there to comfort her, hold her hands in mine, cradle her head in my arms as she suffered, say sweet nothings to ease her fears. I want to be there when she comes home from the hospital to make her the right soups and healthful, restorative foods. I want to help her bathe and feel pretty. I want to dote on her and meet her every need. And I guess I just want to be with her a bit more, before she leaves me forever. Which I hope won’t be any time soon.

But here I am in Wisconsin with my own children to raise, and there she is in California, trying to get through her own sunset with dignity and grace. I know she wouldn’t want to replace her grandchildren in filling my time with neediness. I know she doesn’t want me to drop everything and run to her. So I’ll just sit here for a while doing nothing (except hassling Mark hourly to demand updates on how Mom’s feeling), and if all goes well, I’ll visit next month and help out a bit.

We all just do the best we can, and that’s the best we can do, eh?

I renewed my auto registration four months late. Whatever.

This year I needed to pass an emissions test to renew my car registration. My re-registration month is July, but I didn’t manage to get into a testing location during that month. There were question marks in my mind about whether I would pass. I drive a 2003 VW station wagon, and it’s lemony – though I would describe it at this point as a beater, not a junker. It’s at 120,000-odd miles and still going strong, but it’s fussy and needs love.

Anyway, I wanted to take it to the shop before I did the emissions test, but things happened and I kept forgetting, and the months passed. A couple weeks ago, the car started coughing and farting, and so I finally took it in for a tuneup. It needed a new exhaust hose and a few other things, and an oil change and new filters. Also a front headlight had been out for quite a while.

So I got all that stuff fixed up, and today I finally made it to the emissions testing location.

Which is to say, for 4.5 months I was driving around all over the place with an expired registration and a broken headlight. Also my car is filthy. It’s keyed and banged up, dinged by a thousand times by the moms and kids who are the primary denizens of my early-childhood world. The trunk, well-visible to the outside world, is filled with a disheveled pile of reusable bags. I am the bag lady. There’s barely room to put anything in the rear because of the bags. Either that, or the pile is hiding something underneath, something nefarious and illegal.

I pulled in for the emissions test today, at a rapid-oil-change business near my home. Three very professional men were staffing the business, and they happened to be black. Unlike Tomi Lahren, I see race, because it is on the face of people, so I noticed they were black. On the other hand, it wouldn’t normally be a significant data point to me in this setting. But the way black men are sometimes treated during traffic stops has been heavy on my mind for the last 4.5 months.  During which I was never once pulled over. So today I took more notice of it than usual.

As I waited for the emissions test results, I wondered if these well-mannered, professional, pleasant men had any particular thoughts when they saw someone like me come in — a mostly white-looking (though perhaps they would spot my ethnicity), middle-aged woman, driving around with a long-expired registration, having obviously paid no price for it except a ten-dollar late fee.

Do they look at me and shake their heads, thinking “white privilege in action”?  Are they indifferent? Do they feel angry?

I don’t know. I only know that I would deserve that.

Because I got away with it. I was never pulled over. No police car ever tailed me suspiciously. I never felt unsafe. I mean, I didn’t want to pay a ticket, so I worried about that. And I worried how Jesse might react, what with her anxiety, if I was pulled over with her in the car.  But I never worried that I would be shot or arrested or humiliated or killed because of my expired registration.

And I admit, I was in no hurry to renew the registration or get that headlight fixed. It was a little bit of a personal social experiment. I kept waiting and waiting as the months passed, to be pulled over. Didn’t I deserve to be? Would a cop ever bother to run the plates on a station wagon piloted by my pudgy cheeks, fair skin, and graying very straight hair?  After I parked somewhere, would a cop ever wander over innocently to look in the window of my filthy car, full of bags hiding who-kn0ws-what, and find an excuse to search it?

Apparently not.

job opportunity

I pick Jesse up from school. She’s tired, so tired, so utterly fatigued, like she is every day for now. Recovering from Lyme disease and pneumonia is going to take a long, long time.

She sits quietly in the back seat during the 5-minute drive home. I eye her from the rear view window, gauging whether she’s depressed or just tired. We chat about lunch, which has always been a difficult time for her. She’s still too afraid to eat in the cafeteria with everyone. Noise, food allergy dangers, tic dangers. But also it saddens her deeply to have to eat in the office by herself. She’s allowed (required?) to ask a classmate to join her, but according to Jesse, mostly they say no (one actually said to her, “no thanks, I want to eat with my friends”). So that’s kind of humiliating. There are a couple peeps who will eat with her; but even there, she says that once in a while they forget and head off to the cafeteria. So on days like those, if an adult isn’t available to join her, Jesse sits in a room by herself and eats.

I try to imagine what that feels like when you’re eleven.

But I don’t want to impose my feelings on her, and I don’t want to talk about lunch too much and make too big a deal of it. As we turn onto our own street, a thought percolates up out of nowhere. “Jesse, would you like it if I go back to work?”

She thinks about it a second, her eyebrows raised. “Yeah, that would be great.” She sounds awfully chirpy about it.

That makes me feel surprisingly chirpy too. “I could start looking for something right now then. Maybe it would be good if I work. But then you and Nick would have to go to after-school care, because I wouldn’t be able to pick you up. And you’d have to help more around the house.”

“Well… I think you should get a job, but maybe not for a couple years. Like when I’m in high school and Nick’s in middle school. Or when Nick is in high school too.”

We’ve pulled into our driveway. Jesse drags herself out of the car and is starting to grin. “Actually, it would be even better if you wait until we’re in college.”

I see where this is headed.

I’m an underachiever

I’m participating in something called “Partners in Policymaking.” It’s a training program, and I can’t describe it any better than it describes itself: “Wisconsin Partners in Policymaking is a six-session advocacy and systems change training program designed to develop a group of future leaders across the state, who are able to work with legislators and communities on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life.”

Um, okay. I guess I’ll try to be a future leader <she says sheepishly>. It seems like a tall order for an under-achieving dropout like me. But I’m fifty years old, so maybe it’s finally time to make something of my life. I’ve got some big ideas on stuff I’d like to accomplish in this arena; but as Anthony says, “we’ll see.”

He means, I always have big ideas. It’s a question of whether I follow through.

Our first assignment for the Partners training was to learn and write a page about a disability leader. I chose Judi Chamberlin from the list we were given, because she was an advocate on the mental health front. This is the battle Jesse faces in the years ahead. I did some research, read about Judi’s life and work… And then felt even more like an underachiever.

Being an underachiever, I figure I can double dip — not only have I written my assignment for the Partners training, but it can double as today’s post. So here’s what I wrote (with some personal annotations in brackets). Just about every paragraph begins with “Ms. Chamberlin,” but I’m not sure how to fix that. This is, after all, about her. May this brief and shallow outline of Judi Chamberlin’s life inspire you, as my research about her activism has inspired me:

In 1966 [the year I was born!] Judy Chamberlin, then in her early 20’s, voluntarily checked into a psychiatric facility for severe depression. After several voluntary hospitalizations, she was diagnosed with schizophrenia and confined against her will for five months. She quickly learned that she had no legal rights as a psychiatric patient, and she witnessed many abuses. [When we checked Jesse in to Rogers hospital for intensive out-patient therapy, we were required to sign a ton of documents, including one that gave Rogers the authority to hospitalize Jesse without parental consent if they deemed it appropriate, and to medicate her without parental consent if she was so hospitalized! In 2016! A condition of outpatient treatment! Imagine! At the time, we signed it. I still don’t know why. We should have said no. Anyway, back to Judi:]

After Ms. Chamberlin was discharged, she moved for a time to Canada, where she observed people with mental illness participating in a self-directed care model, using funds provided by the government. When she returned to the United States, she joined the still-developing psychiatric patients rights movement and became a fearless, passionate advocate for self-determination, working to end human rights violations within the mental health system and to create survivor-based, non-coercive treatment and support systems.

Ms. Chamberlin was a founder of the Ruby Rogers Advocacy and Drop-In Centers — self-help centers staffed by former psychiatric patients. She was a founder of the National Empowerment Center, also run by and for survivors in pursuit of recovery, empowerment, and hope. Ms. Chamberlin was a leading influence in the Mad Pride movement, which seeks to reclaim terms like “mad” and “psycho” from mis-use. [So I’m not alone in wanting to own these words — I’m still partial to “Crazy Nation.”] In the 1990’s, Ms. Chamberlin joined the board of MindFreedom International, a coalition of grassroots organizations advocating to end human rights violations against and coercive treatment of psychiatric patients, including forced hospitalization and medication, restraints, seclusion, and electro-shock therapy. From 2001-2004, Ms. Chamberlin served as co-chair of the World Network of Users and Survivors of Psychiatry.

Ms. Chamberlin wrote a great deal during her decades of activism. In 1978, she published “On Our Own: Patient-Controlled Alternatives to the Mental Health System.” In it, she spoke of the importance of self-determination and self-direction in treatment. The book has become a seminal text in the development of the survivor movement. Among other things, Ms. Chamberlin coined the term “mentalism,” to describe discrimination and oppression of individuals because of a real or perceived mental trait or condition. She challenged the negative assumptions faced by psychiatric survivors — incompetence, helplessness, unpredictability, and violence — and the patterns of treatment arising out of these assumptions. [The term hasn’t come into general use. Some things I read suggest it’s been crowded out by the idea of “stigma.” But stigma is about societal attitudes, while I think Chamberlin was trying to get at something more institutionalized with her use of the term.]

Ms. Chamberlin participated in drafting the National Council on Disability’s federal report, “From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves.” Published in 2000, the report focused on the continuing plight of psychiatric consumers. The cover letter from the NCD captured a fundamental ideal underlying Ms. Chamberlin’s lifetime of work: “We look forward to the day when the label of psychiatric disability has no more effect on people’s rights than does the existence of any other disability label. Until that day, NCD believes that people with psychiatric disabilities will remain among the most underprivileged and disadvantaged of American citizens.” [This is really intense food for thought. I need to ponder for a long time.]

Ms. Chamberlin never stopped being an advocate. Even her journey to death provided her with opportunities to continue her activism for self-determination. She became a staunch advocate for the patient-centered model of hospice care; and she herself died at home with the aid of hospice care, surrounded by friends.

[I hope I can go out in style like that too. Way to bring it in strong, Ms. Chamberlin.]