Tuesday, July 15, 2014


This summer I'm loving to cook.  It's delicious, and it allows me to be experimental in safe ways.  I mean, really, I haven't found a way for cherries, butter, and flour to be that much of a disaster (unless they catch on fire, I guess, which hasn't happened).

I've shared my cooking with you--the fact that I'm making pies now, and desserty things that use up random things in the house:  buttermilk pie, apple coffee cake.
Cherry pie. Probably my favorite.  Delicious dessert
AND breakfast.

Apple coffee cake.  I should have given
one of them to the neighbors.

Peach cobbler--an ideal dessert for summer in the South,
when peaches are beyond delicious.  But this version
was only acceptable--didn't blow my mind.

I do love desserts, and I've begun adding non-sweet foods to my cooking repertoire.  Organic food is growing outside my office this summer, like it's done every summer.  But this summer, instead of just walking by, I'm getting on my hands and knees every day and gathering tomatoes, blackberries, and Japanese eggplants.  And lo and behold, I'm eating them!  I've had tomatoes as part of my dinner almost every night.  The one time the blackberry bush was actually productive, I got about a cup of blackberries, so I made a blackberry cobbler (I found a recipe for 6 people and made it into a recipe for one).  It was fantastic.
Do you see this?  I picked these! With my hands!
I even picked Japanese eggplants--the eggplant bush is covered with them.  Probably 20 eggplants growing there.  So I did a little online investigation, and I found a recipe that said to sprinkle them with salt, let the liquid drain out of them, slather them with garlic, olive oil, and lemon juice, and then bake them.  Turned out great.

Maybelle's started helping me--in very limited ways, but helping.  She gets up on her stool and adds chunks of butter to the flour for the pie crust.  With my hands guiding hers, she pours milk into cobbler topping.  She has no interest in eating any of this food, but she watches it in the oven and happily announces its presence when it's cooked.  "Pizza!", she often says, but she'll switch to its actual name when I coach her.

It's comforting.  Sometimes there are stressful things happening in my life.  Things I have no control over.  So this summer I've discovered that cooking is something I do have control over.  So I keep doing it.

Tuesday, July 1, 2014

Glenn McConnell is now CofC's president

He supports the Confederacy.  And as of today, he's
 CofC's new president.  We're going to have to wait and
see what this means.
Glenn McConnell takes office today as the president of the College of Charleston.  I don't think there will be any sort of ceremony--he'll just show up at work and stroll into what used to be George Benson's space.  I assume he'll offer a pleasant good morning to folks who are there.  Perhaps he'll make some phone calls.  He'll talk to the media.  He might stroll around, take a look at the orientation events that are happening.

He'll almost certainly do other things.  As president, he'll have the power to change peoples' jobs, move people around, lay them off.  This isn't because McConnell is some sort of monster--it's simply what happens when you have a new president.

I'm troubled by McConnell, as readers of this blog and of the City Paper know.  Indeed, on March 22, when McConnell was offered the job, I said we were going to hell in a handbasket.  I'm concerned about the evidence he's provided that he's homophobic.  I don't deny that claim, but since he's now actually president, we have the opportunity to find out what he'll actually do.

I have a column coming out tomorrow in the City Paper, so I don't need to repeat the information I'm grappling with there.  What I'll say now is, today's the day.  Pay attention.

Friday, June 27, 2014

The Turnip

On Monday I bought my car.  I wrote a funny column about it for The City Paper, but my more...intense thoughts were on this blog.  I'll have more about intense thoughts in the next few days, but for now, I want to let you know some new facts about the car.

1.  I drove it to Greensboro, NC, over the last two days.  Yes, I drove most of the time!  I discovered that my interstate skills hadn't disappeared at all.  I was perfectly capable of changing lanes, using cruise control, slamming my foot on the brake if need be.  As I drove, I had some of the freedom thoughts I wrote about before:  I considered how difficult it would be to put Maybelle into her carseat with her Haley and head off to Greensboro again to visit both my brothers.  Could I do it solo?  I think so!  We might spend a couple of summer weekends with the North Carolina Piepmeier Miller cohort.

2.  When I first wrote about the car, Erica brilliantly named it The Eggplant.  Totally appropriate:  the car is an eggplanty purple, and it's almost completely rounded, no corners.  Plus, I enjoy eggplants. Who doesn't love eggplant parmigiana?

Then Trey met the car, a car about which he'd been a little...skeptical.  He found it acceptable.  And because he has a sort of odd, perfect sense of humor, he started calling The Turnip.  You know, because it's not at all like a turnip.

But it turns out that the car actually prefers that name.  The Turnip captures its personality.  It feels it's more appropriate.  So that's its name now.  As I drove back to Charleston, I offered it several pats on the dashboard and said, "Good job, Turnip."

Wednesday, June 25, 2014

I have a car! The personal reflections, with pictures

OMG!  This is my car!  (This is really how I felt.)
I suggest that you read my City Paper column, which is funny and far less personal.  Then read this post if you want more of my own reflections about my life.

As of Monday, I have a car.  I can drive, and I have a car.  

I'm having an interesting set of feelings emerging from this.  I'm excited to be able to drive.  I'm excited to have a car, one that's safe and reliable--and these feeling aren't surprising to me.  I keep forgetting what I can do with a car, and that's been a sort of repeating delight.  For instance, Maybelle had a dentist appointment on Tuesday.  On Monday I thought, "Shit!  I haven't scheduled anybody to take us there!"  Then I realized, "Oh, I have a car!  I can take us there!"  She was invited to a birthday party in Mount Pleasant on Saturday.  The thought of making phone calls to find who we might ride with made my energy level begin to sink.  Then I realized, "Oh, I have a car!  I can take us there!"  Even on a smaller level, Monday I thought, "Shit!  I'm going to have to bike to the grocery store!  Will I have time for that?"  Then I realized, "Oh, I have a car!  I can take myself there!" This is happening again and again, and every time I realize that my expectations get to shift, I'm thrilled.
"Mama's car," says Maybelle happily.

But one feeling I'm having is surprising me, and at a different level:  driving Maybelle to dance class on Tuesday afternoon, I realized that we can go anywhere.  I could put gas in the car, and she and I could take off right then for Tennessee, to spend more time with my parents.  We could go anywhere.  The sense of freedom that swept through me at that moment was not something I'd expected.  Yes, a car is incredibly convenient--but this feeling was far more than that.  It was elation, openness, like I was able to breathe more easily.  I realized that the last three years have been more frightening to me, more constraining, than I'd let myself realize.  

For the first year that I couldn't drive, Walter would take me and Maybelle anywhere we needed to go.  For the next two years, Trey was available at any time.  I could call him from school at 4:30 and say, "It's raining! Can you come take me and Maybelle home?", and he'd say, "I'm on my way."  I'd say, "I need to go to my therapist this week," and he'd say, "When? I'll put it in my calendar." Then Trey moved to North Carolina.  And that event, among others, allowed me to start experiencing the reality of being a person who can't drive.  Not being able to drive dramatically affected my life.  

I'm a person with a brain tumor, and because of the brain tumor, I have seizures.  This is a pretty common phenomenon:  when something messes with your brain, you often start experiencing electrical reactions that cause seizures.  In fact, it's a big seizure that allowed us to learn about my brain tumor to begin with.  I've had seizures ever since then, and they became large enough--tonic clonic--that I was no longer safe to drive.  My neurologist helped me adjust my medications, then adjust them again, and then again.  He was successful:  my last big seizure was April 9, 2013.  So now I'm allowed--legally, and with my neurologist's endorsement--to drive again.

Driving a car doesn't make me think that I don't have a brain tumor.  It hasn't allowed me to trick myself into thinking I'm a person who doesn't have seizures--and who might never have big ones again.  I'm a person with a disability.  I'm a person who has seizures, and a brain tumor.  This is something I'm grappling with and that I know I'll be writing more about.  

So this is what I think might be happening:  I couldn't (can't?) recognize my disabilities.  And as a partial result of that, I haven't been able to recognize my fears, my limitations, when I'm in the midst of them.  For the last three years I often felt anxious, sad, exhausted being a person who can't do many, many things without the help and support of friends.  But I didn't know the depth of those feelings.

Right now the feelings are diminished, and the sense of lightness this brings to my body--like I'm full of oxygen, I'm shining through every pore--is allowing me something new.  At some level I'm afraid that this won't last--now that I know what it means, it will be so painful to lose it.  But there's no way to know, so I'm trying to be in the present moment.

As I said in the City Paper column, Hello, ugly car.  Welcome to the family.

Saturday, June 21, 2014

Big fun in Cookeville, TN

Editor's note:  This is probably a post that only friends and family will want to read.  It's all upbeat and adorable, but there's nothing political here.

This is our last full day in Tennessee, vacationing with Nonnie and Poppi, and we've had a great time.  Here are some of the highlights:

Showing off for Nonnie and Poppi
Maybelle scootering with her grandparents.

Maybelle making Nonnie share her chair
Maybelle is in charge of the household.  Every chair is hers,
and she forces my parents to move or to share.  (This was
Maybelle being generous, letting my mom do some computer

Tickling is one of my dad's gifts.
My dad is truly gifted with the power to tickle anybody
who's ticklish.  No one else can tickle Maybelle the way
my dad can.  She loves it.
And now videos!

Heading off into the wilderness on her scooter June 17, 2014 from Maybelle on Vimeo.

Here's the first moment I realized Maybelle is competent with the scooter my parents bought her.  This video might make you sick to your stomach because it's so shaky, but she's impressive as she heads out away from me.

Scootering in the fountain from Maybelle on Vimeo.

Mom had the excellent idea to encourage Maybelle to scooter in the fountain so that she wouldn't scald her feet on the incredibly hot pavement.

Ah, Cookeville. I had the thought that I might do some work while I was here--and I've done a bit--but it's been far more valuable to hang with Maybelle and my parents.

Friday, June 20, 2014

Chris Korey and I, super-famous at the Personal Genetics Education Project

April 2013, Chris Korey and I went to a meeting of the Personal Genetics Education Project (the GETed Conference), related to the Genetics, Environments, Traits Conference.  This was a really interesting meeting for me, in part because I was the only person there asking the group to think about prenatal testing not as a scientific success but as something emerging from and contributing to troubling cultural narratives about people with Down syndrome.

If you want to remember what my experience was like, here are the two posts I wrote:
Chris is an excellent travel companion (as well as an excellent geneticist), and our work at these meetings helped us make great plans for our Genes, Genomes, and Human Diversity class that we taught spring semester 2014.

Since I'm sure you want to see how fantastic Chris and I are together (I'm not kidding), here are some videos they finally released!  Chris and I agreed to be interviewed, and in the interview we're talking about our research perspectives and how they relate to each other.  I'm interested in what students from the Genes, Genomes, and Human Diversity class have to say, because I strongly suspect these interviews are a good representation of what we were like team-teaching the course.

Aren't we great? Don't you want us to get our own TV show?

Wednesday, June 18, 2014

The writing process

Why this cover?  I don't know, but
the book is damned good.
I do a lot of writing these days.  Academic writing, blog writing, column writing.  Just today my latest Charleston City Paper column was published, "Forgive Me If I've Fallen in Love with Romance Novels" (I have, in fact, fallen in love with them, and you should read the article for the quotes from the novels, if nothing else).

What I'm discovering is that the book I'm trying to write is really challenging.  The book doesn't have a title yet, but it's about prenatal testing, reproductive decision-making, and Down syndrome.  It's under contract with NYU Press, and they're fantastic (as is my editor--she edited Girl Zines, and she's absolutely great to work with).

The subject matter of the book isn't challenging to me.  I have so much to say about it--I've become the kind of person who could talk about these ideas for 30 minutes if someone asks me one question.  I've been fortunate to have hours of conversations with people whose experiences relate to the topic, and their stories have challenged my assumptions, made me think in different ways, validated some of my experiences, and helped me connect with people who are now friends.  Good stuff.

What's challenging for me is a clear, coherent focus.  The conversations, among other aspects of my research, have made things complex.  Complexity, as we all know, is a crucial element of critical thinking and of provocative, substantive writing.

What I want to do is be complex and also focused.  This is in part because I want this book to be more mainstream than academic.  This means it can't deal with 1000 separate topics.  Academic books can do this (which is one reason that they're generally only read by people with PhDs), but mainstream books need to have a complexity that circulates around one focus, maybe one story.

Yesterday I was talking with a group of feminist scholars and writers about this book.  They asked what I want it to do.  Here's a version of what I said:
We're in a huge transition moment for Down syndrome and intellectual disabilities:  250 colleges nationwide have inclusive college programs.  And at the same time, non-invasive prenatal testing is becoming more affordable and more common when women are pregnant, which will almost certainly lead to more abortions of fetuses with Down syndrome.  Thoughtful people recognize this, but I want this book to encourage readers to move beyond cognitive understanding of reproductive decision-making and have more of an emotional experience of the decisions women have made, and of what it means to be a person in the world who has Down syndrome.
The group said, "That's a mainstream book."

So I want to write a book that bridges the academic and the mainstream.  I want to write a book that isn't so much making an academic argument as it is inviting readers to experience meaningful stories--my own and those of the people I interviewed.  These stories will be making a larger point.  I don't have experience doing this.

The group suggested that I blog about the process of creating this book.  Maybe writing these blog posts will give me some clarity.  Maybe you all will have questions and feedback that will push my thinking.

Sadly, I don't think there will be any material in the book that describes sucking a citadel, or anything hard pressed against someone's inner thighs.