Wednesday, May 27, 2015

Why, you stuck up, half-witted, scruffy-looking Nerf herder.

I'm here to let you know that there are potentially important events happening this winter. I'm also reflecting on the roles Star Wars has played in my life.

"Princess Leia taught me to be tough," my latest piece for the City Paper.

Tuesday, May 12, 2015

My brain

Smiley siblings!
Trey and I do an especially good at offering out-of-control happiness.
On Monday, my big-time medical team said, "Yep, your brain tumor is staying still.  Right on."

Right on!  That's exactly what I want!  Thank you, chemo.  Keep on, heathy brain cells.   Encourage the brain cells to stop moving, to fall asleep, to dissolve into a million pieces that will get washed away.

Here's Trey's celebration:

Trey is a dancing machine.
Trey is a dancing machine.
Trey is a dancing machine.
Trey is a dancing machine.
Trey is a dancing machine.
Trey is a dancing machine.
He is talented.

Friday, May 1, 2015

Maybelle = recognized and validated as a full human

Beautiful, right?  That was a beautiful photo.  I win!
This is Nativity School.  It's where Maybelle will be going to school this fall.  As a first grader.

I've been there several times to learn about their place and to see if the Nativity folks are interested about Maybelle.

  1. The first time I went to see the principal and to meet the woman who would be Maybelle's teacher.  They parked me in the first grade class for twenty minutes or so, so I could get a real sense of what that class is like.  The kids were doing their thing, answering lots of questions together and getting to write answers on the board.  Looked pretty good. Then the teacher and I went into the principal's office--Patti--and talked extensively about Maybelle's characteristics.   No matter what I said, they looked at each other knowingly:  "Oh, I remember that kid who walked on the roof for the first two weeks of class.  Maybelle's gonna be much easier to settle in."
  2. The second time was when they wanted Maybelle to meet them, and them to meet Maybelle.  She came to the school for four hours so that she could meet the kids who'd be in her first grade class, do more of the studying in first grade, and doing some kind of game/PE since it was raining.  Apparently Maybelle loved it.  Patti and the teachers talked with the kids ahead of time, letting them know that everybody's different, and Maybelle's not going to talk the way you do, and she'll be in a really different place."  The kids were eager to take part in meeting with and supporting Maybelle--so much so that the teachers had to get the kids from smothering Maybelle (a very good problem to have).  I wish Maybelle could tell me what they did that day--whatever it was, she was pleased.
  3. The third time I went there, which was today, I asked Patti whether Maybelle is going to be able to go to Nativity.  Will she be able to come?  Like, really come, not just "let's see"?  She smiled and said, "Yes!" as if she was a bit confused about why I was asking.  

"She's accepted?"

"She's accepted," Patti agreed, smiling.  "I thought I told you the last time."

"You told me it was 99.9 percent," I said.

"Well, she's definitely welcome."

I threw my arms in the air in a "woo hoo!", then covered my cheeks and mouth, like I needed to suck up and collect the overwhelming happiness I was feeling in this moment.

She's accepted.

I know that many of you read the letter I wrote to another Catholic school (and if you haven't, you might as well, because what I'm writing here is a response).  I thought we were in great shape when I visited, and I was happy when four of the teachers and their assistants spent four hours at ECDC.  I thought they were studying the most effective way to incorporate her into the school.  But I was wrong.  This Catholic school said that they can't meet Maybelle's needs.  They can't provide the right support or a successful educational experience.  They seemed to see her as a lot of work--more than they could do in the kindergarten or first grade rooms.

Meanwhile, there's Nativity School--which has less money, very few administrators, and no teaching assistant after kindergarten.  And they don't seem to worry.  They aren't concerned about Maybelle's needs because they feel that people in the world have all kinds of differences, and because we're in a place where we value everybody, having different people is a good thing.  Everything I know about inclusion, they already know.  I mean, really!  Cindi--inclusion goddess--and I went there today, but they were already all over what we'd hoped we could train her to do.  Patti said, "We know that one of the most important thing is for her to become a member of the community."  She said, "We expect all the kids to have big, challenging transitions at the beginning of the year.  It may take longer for Maybelle to do that, and we'll respond to that." She said, "We've had a student who sometimes needed to stretch in the back of the room, and that's fine."

Do you get this?  Do you get it?  Nativity School!  Even though I've got no God going on here, I'm grateful that Maybelle seems to have a perfect school that will allow her to be an inclusive person, to learn valuable skills, but more importantly to become a real person.

Here are Cindi and I after today's visit with Nativity:
Cindi and Alison
We love you, Nativity!  Also, we both look totally cute.

Friday, April 24, 2015

"People Like That Are the Only People Here: Canonical Babblings in Peed Onk," by Lorrie Moore

Last night and this morning, Elizabeth and I have been having a discussion via blog comments and email.

Here are our comments on Elizabeth's blog's post.  She wrote about things shifting in a good direction, and the fear this can generate (she's a fantastic writer--go read it right now then come back and read the rest of this post):

Alison:  Ah, Elizabeth--you're digging into this. It's scary to dig into hope. I may be uneasy (grouchy?) by the expectations that you're brave, wise, etc. But I know that this framework works for you (isn't it odd how we can find some similarities that emerge from our differences of opinion). 
Anyway, my tired brain gives you a hug. And I'm super glad to hear that you might have the possibility of hope. 
I like the idea of digging into hope. I'm not sure what you mean by the "uneasiness" or grouchy way you feel -- nor what framework you're referring to. Plea service elaborate, wise Teacher!

Alison: Rereading my comment, it sounds like I'm saying that I'm uneasy about YOU, and I apologize! I think what I'm saying here is that when people say I'm wise, part of me wants to say, "Akkkk! No, I'm just making my way through this the way any of you would! It's not my wisdom that's brought along a brain tumor to a wise person!" So I generally appreciate the warmth that's conveyed through…what…I'm not even sure. I guess I'm talking about some of the compliments as feeling distancing. If a friend touches my shoulder and makes the "This can really suck, can't it?" facial expression, that can feel really connected.
I am truly throwing this out there without even rereading.

Elizabeth gave a response via email:

Yup. THAT I understand and know exactly. My favorite is the old "I could never do what you do." It makes me feel incredibly isolated. My favorite ever short story is by Lorrie Moore -- "There Are No People Like That Here" in Birds of America. In it, she recounts the story of a woman whose baby is diagnosed with a cancerous tumor. The people who she most relates to, who help sustain her, are those who fully acknowledge the suckery of the situation. Who say "holy shit!" when they see the baby in the hospital crib after surgery, etc.

So she recommended the story (info in the subject line).  And I read it.  It's Friday at noon, and I felt a little guilty because this story shouldn't get in the way of the grading.  Which I wasn't doing anyway (please notice the blog/email conversation that was not the same thing as grading papers).  But I realized that our conversation and my reading do play a role into my research.  And that's not a joke.

So here's the quick response I would have written to Elizabeth.  I figured I might as well share it with you, too.

The story starts with the Baby's bleeding which almost immediately leads to the children's cancer institute, with rooms of families, or divorced fathers.  They're sitting there, being out of control, seeing some of their children being in the process of dying, seeing how vulnerable their bodies were.

The text is written in an explicit third person.  The child (called Baby) gets some description, but Mother, who's central to this story, and Husband (notice that he's not central here--not fully connected to Baby), are presented as voices and feelings, not as descriptions of their bodies or the sounds of their voices.  The doctors all have titles, too, as do all the folks who are living at the children's cancer location.  There they all are.

What does this mean, Elizabeth?  What does it mean to have such separateness?  To me, reading the story, it felt like I kept being pushed out.  I'd want to connect, but I'd be pushed:  this is Mother, not the beautiful/fat/activist/traditional/etc. person.  And her focus is her Baby.  Of course it is.  And as a reader, I'm being given some feedback from the person who's written this book, and who's occasionally asked questions and framed things to me specifically.

I end up feeling like I'm watching different pain and fear in a space where I'm not invited.  I'm looking at them.  Here's one thing:  "She is feeling relief and rage simultaneously:  there is a feeling of prayer and litigation in the air.  Yet essentially, she is grateful.  Isn't she?  She thinks she is.  And still, and still:  look at all the things you have to do to protect a child, a hospital merely an intensification of life's cruel obstacle course."  The simultaneous feelings…I can relate to that with my own health.  Life's a cruel obstacle course for all of us, though.  It's part of what it means to be a person in the world.

And another thing:  "'You've got to have a second child,' says a different friend on the phone, a friend from out of town.  "An heir and a spare.  That's what we did.  We had another child to ensure we wouldn't off ourselves if we lost our first."  She goes on to say that it's a rope she has planned.  This story relates to my world of talk.  I've had conversations about this issue with more than one friend.  A response to life's cruel obstacle course.

It's not a story with an easy ending.  There is an ending--things change at the end--but that doesn't matter to me.  What matters is watching the tools the Mother assembles:

[The Father says] "All of those nice people with their brave stories…Don't you feel consoled, knowing that we're all in the same boat, that we're all in this together?"
But who would want to be in this boat? the Mother thinks.  This boat is a nightmare boat.  Look where it goes:  to a silver-and-white room, where, just before your eyesight and hearing and your ability to touch or be touched disappear entirely, you must watch your child die.
Rope!  Bring on the rope.

Eizabeth, what do you think?

Sunday, April 19, 2015

How much I love "our new home"

(It's not a new home.  That's what Maybelle calls it since that's its name, according to what we called it in September 2013, when we moved in.)

Our house
Good morning, living room.  XOXO.

This is one of my favorite views: I'm sitting at the table (yes, woman, you're at the computer when you could be doing something appropriate with your life right now. I realize it's a ridiculous thing to think, but I do worry about lots of things that I might be doing that's wrong. But I digress.) It's early morning. I'm drinking coffee, and I look up and see this. Often this is an image including Maybelle, but I think she wasn't awake yet when I took this picture.

Our fuzzy couch that can be destroyed time and time again, because we have covering I can wash.  Her Girls all over the floor. Her tricycle that lives inside (it gets lots of outside time).  Her castle at the right.  Her bookshelf to the left, mine to the right (thank you, Claire and Larry).

Notice the details.  The art on the left of the that says "Feminist" (thank you, Eliza!).  Maybelle's steps that she's moved so that she can access the top of the bookshelf, where I've been putting things that need to be taken away from her.  There's an empty laundry basket.  There's an empty cereal bowl from the night before on Maybelle's special table (thank you, Lynne!).

I love our living room because it's beautiful with its colors and loads of framed photos of people I love (thank you, Eliza and Trey).  I love it because it's a mess and that's how I prefer to be (thank you, Mama).  I love it because it feels so welcoming (I've got to invite some people over).  It feels safe, comfortable--it feels like us, Maybelle and me.

Don't you think it's significant that some of my friends and family are super-stars who've helped to create our new home?

Hello, new home.  Maybelle and I are really happy to be here.

Tuesday, April 14, 2015

Show me what democracy looks like.

Activism is challenging.  What does it look like?  What forms can it take?  What kinds of risk am I open to?  Is there hope to move this hope forward, to continue trying to eradicate all forms of oppression that keep us from achieving our full humanity?