Ducks

The surgery is one week from today.

I'm responding in part by trying to get everything organized now, while I have memory and intellect, while I have predictable energy levels and schedule.  I've made lists:  what we should pack, what our friends should pack for Maybelle when she comes up, what Maybelle's schedule will be while we're gone, the contact information of every person she'll interact with.  I've written down all my usernames and passwords so that Biffle will have them in case I'm out of it.  I've gotten in touch with all of Maybelle's therapists.  I've finished my annual evaluation early, I've put together a panel for the National Women's Studies Association Conference, I've had conversations with the interim director of Women's and Gender Studies and with my dean.  We're shopping this weekend so that the house is well stocked for the friends who are staying with Maybelle.

Biffle pointed out today that this may be the hardest part of the process for me.  I love a task, and at this point, there's not much I can do beyond getting my personal and professional lives ready for my temporary absence.  My therapist observed that I’m going to be experiencing complete dependency on my neurosurgeon—as he put it, my “intelligence and hard work won’t make a bit of difference during the surgery itself.”  So I'm compensating by putting my organizational skills to work wherever I can.  Can't hurt, and it might help.


This is a coping mechanism, of course, because right now--one week away--it's very easy to think about hard things.  Big things.  To worry.  Let's just say I've been thinking about Maybelle a lot.  So instead of letting myself dwell on worst case scenarios and terrible fears that seem far too possible, I'm getting all my ducks in a row.

Because y'all haven't heard from me in a few days

All is well in Brain Tumor Land.  I have no updates from that front but wanted to share a weird encounter we had at the Children's Museum on Sunday.  It was a packed day in the toddler room--kids everywhere.  Maybelle was in a glorious mood, smiling at other kids, trying to steal the rolly ladybug from a little girl, patting her hand in and out of the sunshine to see the shadows.  She did two things she hasn't done before:  crawled through a tunnel (the first time she had to go reeeeeeally slowly, but thereafter she was pretty quick), and voluntarily slid down a slide (again and again and again and again).

The weird encounter:  at one point, a woman turned to Biffle and said, "Don't worry about her size.  When my little one was seven months old, she weighed about 20 pounds.  Then she got taller and didn't gain much weight, so by the time she was two she was normal on the growth charts."

It was a confusing thing to say, and Biffle and I weren't sure how to respond.  Biffle told the woman that Maybelle's actually older than that and is a little small for her age, and then the woman mumbled something incomprehensible and started talking to another mom.  I can see how the woman assumed Maybelle was seven months old, rather than seventeen:  she has only one visible tooth, she doesn't walk yet, and her spoken language is incomprehensible to folks who don't know her.  And yet, it was a bit of a bummer.  I feel sometimes like we should make a little shirt for Maybelle--it would be the companion to the bumper stickers on our cars and would say "I have more chromosomes than you do."  That might at least invite meaningful conversation.

And, because you may not have enough cuteness in your day today, here is the seventeen-month-old herself:

Surgery date

A friend reminded me recently that I haven't let Baxter Sez readers know about the date of the surgery.  It's going to be Feb. 12.  We'll be in the Durham area from Feb. 11 through probably Feb. 19.  Now I feel the voice of my internalized father warning, "You don't tell people when you're going to be out of town!  They might rob the house!"--so please be aware that people will be in our house the whole time we're gone.

Reconstructing Motherhood and Disability

I thoroughly enjoyed Reconstructing Motherhood and Disability in the Age of "Perfect" Babies, by Gail Heidi Landsman.  My response to it was similar to my response to Rayna Rapp’s Testing Women, Testing the Fetus:  The Social Impact of Amniocentesis in America, a book published ten years ago that examines women’s experiences and understandings of prenatal testing:  I was fascinated both personally and professionally.  I felt myself reflected in many of the quotes from interviewees, and I also found myself talking back to some of the women being interviewed, wanting them to see things differently.  I read both as a scholar and as the mother of a child with Down syndrome.  Both Landsman and Rapp are anthropologists, which makes me wonder if I have some as-yet undiscovered anthropological itch.

Landsman interviewed women who were mothers of children with disabilities; she interviewed them fairly shortly after the diagnosis, and then a year later.  Her findings were really interesting, and her interpretation of the interviews struck me as sensitive, nuanced, respectful, and revealing.  She herself is the mother of a daughter with a disability, which seems clearly to have aided her scholarship.  And, indeed, this is one of her points that I found most compelling:  she suggests that “what mothers of disabled children have come to know can be used to further our understanding of humanity and to promote the expression and experience of full lives for all people” (173).  She presents these mothers as theorists, not as victims or as “special mothers chosen for these special children”—familiar models in public discourse—but as knowledge producers.  Through their intimate, loving relationships with their children, these mothers have developed a critical stance on mainstream culture.

She doesn’t just unequivocally celebrate the mothers she interviews.  She notes that many of the mothers’ actions are aligned with a medicalized perspective on disability, one that views the disability as something separate from the actual child, and that proposes that the problem is with the child, not with the larger society.  With great sympathy and her own personal reflections, she questions the idea of “the cure” and some mothers’ desire to fix their children, or to change their children so that the children are as much as possible aligned with mainstream cultural norms and expectations.  Those in disability studies and the disability rights movement argue that the goal should be to change the culture itself, not to change the “faulty” individual.  They challenge the very notion of the faulty individual and argue—very convincingly—that disability is culturally constructed, and that much of the suffering attendant on disability is societally created.  But Landsman notes that even as they utilize parts of the medical paradigm, most of the mothers also challenge it.  And many of them come to embrace a potentially radical perspective, one not out of line with disability rights activism:

[A] number of mothers in the study describe a personal transformation in terms not only of rejecting the binary of normal/abnormal, but of embracing the very qualities in their child that are labeled by society as abnormal.  The child’s impairment is in this interpretation not relegated exclusively to a biology separate from the self, but rather is understood as integral to the child and infused with meaning. (207)

Furthermore, she argues that these mothers are reinventing motherhood as they go, that they’re offering new ways of understanding dependence and interdependence and that they’re developing new models for making visible the value of their children.  She also examines some of the ways that feminist discourse hasn’t taken these women, or their children, into account.  She offers a brief but revealing discussion of prenatal testing and abortion.  She shows the ways that her interviewees are challenging and changing the pliable notion of personhood—who counts as a full or “real” person and why.

On the whole, this is an excellent book, a must read for any medical personnel who deal with parents of children with disabilities, and of interest to anyone who’s studying motherhood or disability.  And for anyone who’s both a scholar and a parent of a child with a disability, I think you’ll find this hard to put down.

More on my conversation with my neurosurgeon

Another topic of conversation that came up with my neurosurgeon the other day was the surgery itself.  It'll take 4-6 hours, and I will be awake for most of it.  My NS will be mapping my brain by probing around and asking me questions.  Yes, that's right:  while he's operating on my brain, I'll be having to talk and answer questions so that he knows what to take out and what not to take out.  This is, of course, a very, very good idea, and I'm all for him not taking out important things.  But still--quite disturbing.

I asked, "Will I remember it?"

He said, "Of course!"

Then I asked, "Will I be given any valium, or anything to relax me, to make sure I don't freak out?"

He said, "No.  We don't want to give you anything that might interfere with the mapping."

"So I'll be wide awake, with nothing to relax me.  What's to keep me from freaking out?"

"You won't freak out."

"I don't know--that sounds pretty freaky!"

He was absolutely confident.  "You won't freak out."

"How do you know?"

"You aren't one of the first 500 people I've done this procedure on.  You won't freak out."

You know, he sounded so sure of this, that I almost believe him.  We'll find out--since I'll remember it all, I'll have some good stories to tell when it's all over.

My neurosurgeon

I'm beginning to characterize my neurosurgeon as a lovable curmudgeon.  He is absolutely one of the best in the world at what he does, and he's quite personable and very professional (although my friend Eliza worries about his mo hygiene--when did we start calling mustaches "mo"s, and am I the only one who didn't know this?).  When we met him in person, he let me know that he's one of the faculty advisors to the Duke women's basketball team.  I told him that we would still have used him if he'd been a horrific sexist, but that it was certainly nice that he's not.

Last night I was on the phone with him, and I got a much clearer sense of his lovable curmudgeonly side.  I was asking a bunch of different questions, from whether I'd have any personality changes (no) to how to get my FMLA form filled out.  When I asked how many hours a day I could expect to sleep in the weeks after the surgery, and how long I'd need live-in help, he said, in an exasperated but not unfriendly way, "Why do people always ask these questions?  'How long is the surgery going to take?' 'Are you going to shave all my hair off?'  These things don't matter!  All that matters is what we talked about when I saw you, the long-term effects of the surgery."

I was a little taken aback, but I answered, "Well, people want to know these kinds of details because they're grounding.  There's a lot to take in, and that little information can be really helpful."  I can't remember, but I wouldn't be surprised if he gave a mildly disgusted "Humph."

Does he really not know why patients might want to know these things?  He's a great neurosurgeon, but he might benefit from a tiny bit of training from somebody like Anthony Robbins.

How to write song lyrics...

Remember the Mountain Bed

by Woody Guthrie

do you still sing of the mountain bed we made of limbs and leaves:
do you still sigh there near the sky where the holly berry bleeds:
you laughed as i covered you over with leaves, face, breast, hips and thighs.
you smiled when i said the leaves were just the color of your eyes.

rosin smells and turpentine smells from eucalyptus and pine
bitter tastes of twigs we chewed where tangled woodvines twine
trees held us in on all four sides so thick we could not see
i could not see any wrong in you, and you saw none in me.

your arm was brown against the ground, your cheeks part of the sky.
as your fingers played with grassy moss, and limber you did lie:
your stomach moved beneath your shirt and your knees were in the air
your feet played games with mountain roots, as you lay thinking there.

below us the trees grew clumps of trees, raised families of trees, and they
as proud as we tossed their heads in the wind and flung good seeds away:
the sun was hot and the sun was bright down in the valley below
where people starved and hungry for life so empty come and go.

there in the shade and hid from the sun we freed our minds and learned.
our greatest reason for being here, our bodies moved and burned
there on our mountain bed of leaves we learned life’s reason why
the people laugh and love and dream, they fight, they hate to die.

the smell of your hair i know is still there, if most of our leaves are blown,
our words still ring in the brush and the trees were singing seeds are sown
your shape and form is dim, but plain, there on our mountain bed
i see my life was brightest where you laughed and laid your head...

i learned the reason why man must work and how to dream big dreams,
to conquer time and space and fight the rivers and the seas
i stand here filled with my emptiness now and look at city and land
and i know why farms and cities are built by hot, warm, nervous hands.

i crossed many states just to stand here now, my face all hot with tears,
i crossed city, and valley, desert, and stream, to bring my body here:
my history and future blaze bright in me and all my joy and pain
go through my head on our mountain bed where i smell your hair again.

all this day long i linger here and on in through the night
my greeds, desires, my cravings, hopes, my dreams inside me fight:
my loneliness healed my emptiness filled, i walk above all pain
back to the breast of my woman and child to scatter my seeds again