The holiday isn't simply shit-laden. It's also got some support and laughter, too.

Celebrating life, friendship, and donuts, my Christmas Eve column for the City Paper.

Holiday

I'm in a weird emotional space currently, so I was very tempted to title this post "Holiday shit."  But I don't know that I want to write about holiday shit.  Do I?  I don't think so.  In general things are very good.  It's just that the shit emerges and hangs around every day--not always, but some.

Ah, shit.

So here are some holiday pictures.

Maybelle and Nonni playing at the Cookeville children's museum.  Such a
small, sweet, effective place for Maybelle to play.  She loves it, and it's four
blocks away from my parents' house. 

Rudolph and her back-up reindeer.  I made these at the children's museum.
Maybelle isn't a fan of this kind of creativity.  She runs around the place
playing instruments, grocery shopping, and having her girls run the train.

This great jump land.  Maybelle loved it.

And finally, two pictures related to me:

Peanut butter and honey sandwich, eggnog drink.  Excellent holiday lunch.

Latte, Christmas cookie, and my reading for spring
semester in a quiet coffee shop.

Ho ho ho.

Rape article

I've written about it before, and I'll do it again.  Our campus, our college, and our cities do such a nightmarish approach to rape and sexual assault that most victims don't report, particularly since these systems often interpret this victim as lying, being ridiculous, or asking for it.

My latest City Paper column:  Rape victims shouldn't report their assaults to campus police

The perfect child

Today I read a piece by my friend Amy Julia Becker.  She writes about her life, and about her daughter, Penny, who has Down syndrome.  She writes in political, religious, and personal ways.  An excellent writer and resource.

The article triggered some thoughts in me.  I'm not in any way saying that Amy Julia said something inappropriate--not at all!  Instead, I'm thinking about my reactions.  It can be so easy to see a child with Down syndrome as just as good as.

As I read about Penny becoming a serious contender for her third grade class, I thought, "Whoa, great spelling and reading, Penny!"  Then a few minutes later, walking across campus, I realized that another thought was bubbling up:  "She's 8.  She can spell all kinds of words.  Maybelle's 6, and she can be almost impossible to understand, not to mention to spell.  She'll never win the spelling contest.  I have to work on this!"

We all know what an important member of the food group
frosting is.  I'm proud to say that Maybelle and I loved it.

I have to work on this!  I should bring her home from school early so that we can study math!  I'm not effective enough as a mother!

And the next level:

She's not acceptable as a person with Down syndrome unless she's impressive!  What kind of person will she be if she and I don't work hard enough?

This, of course, is a kind of guilt-ridden series of thoughts that I would have had anyway--it's not exclusively because Maybelle has Down syndrome.  My mother has assured me many times that my freaking-out-motherhood is pretty normal, and I believe her.

But I know that having Down syndrome does make Maybelle's life complicated in certain ways, and it's easy for me to fall into the trap that says things are only okay if she's slow, but ultimately they same as every other.  She's just slow.  But she'll get there.

Fortunately yesterday and today I saw my good friend Cindi May, who happens to be a national expert on best-practices for including kids with intellectual disabilities in the school system.  She's amazing, and she told me several things that stuck with me:

• Maybelle's not supposed to meet the academic standards of kids her age.  Ever.  She's going to fall behind her peers in lots of ways.  And that's fine.  What matters is that she has the skills that will help her to be functional:  an ability to connect with other people, to behave, to pay attention, to interact with her peers, to communicate as best she can.  Of course she's supposed to get as much as she can from her school work, but that's not ultimately not the point.
• And schools need to know that this isn't the point.  Recently a couple of people told me that Maybelle would need to do kindergarten again because she hasn't gotten all her kindergarten stuff this year.  Cindi said, "If we believed that, then she'd be in kindergarten for the rest of her life.  She's not going to learn what typical kids learn in kindergarten.  And if professionals believe that she's so slow that she shouldn't be with her peers, she'll be pulled out into special ed."
• "It doesn't matter who she is or how much she fits our models of school expectations.  What matters is that she learn to be a person in the world, and her peers learn it, too.  She has to be included in her classes."

You got it, Cindi.  She always says thing to me that resonate, make me hopeful, make me ready to keep fighting.  And she loves Maybelle for the person Maybelle is.  They sing together, laugh together.  Cindi's tough with her.  Her whole family both adores Maybelle and is happy to set boundaries for her. They recognize Maybelle as a six year old kid.

As I was thinking about this, I started thinking about a part of my book, the book I'm working on.  Is it fair to put a few of those paragraphs here?  I guess I will:

          But I’ve begun to move beyond this initial framing.  I’m questioning, challenging the notion that everything is fine because Maybelle’s differences are merely delays.  The point isn’t that Maybelle is as smart as typical folks.  The point isn’t that she’ll eventually be that smart, or close to it, if we wait long enough and work hard enough.  The point isn’t that she has other qualities that “make up for” her intellectual disability.  What would that even mean?
          The point is that she’s a valuable human being, just as she is.  Everything is fine because she’s a person in the world.  I don’t want to make her fit into existing systems—I want her to help challenge and change those systems.  “Normal” is not the goal.  Maybelle may never do certain things our culture defines as “normal” and therefore acceptable.  She may never write, because fine motor skills are incredibly difficult for her.  Even at five, she hates holding a marker and will only make vertical lines and circles on the paper.  She’s an impressive reader, at this point more literate than many of her classmates, but this is in large part because people with Down syndrome are often visual learners.  It doesn’t mean in some simplistic way that Maybelle is “smarter.”  Will she ever talk clearly?  Will she ever understand mathematics enough to pay for things?  Will she ever be able to drive?  I don’t know.
          And yet I argue that she’s a full and valuable person, an identity that I initiated as her mother.  But Maybelle’s full personhood doesn’t stop with me or with my family.  Full, valued personhood demands broader societal recognition.  It demands recognition at the practical level:  Maybelle and many other people must have schools and other kinds of support, like occupational therapy and accessible housing, available to them.  More importantly, this recognition must also take place at the ideological level, in the ways we evaluate human identity.

So many of my valuable friends and colleagues have made this point:  George Estreich, Rachel Adams, Michael Berube (do you have a better website than this, Michael?).  Ian Brown has addressed the issue.   Nancy and Bridget Brown.  I know there are so many more…I can't list them all (even Elizabeth, Kate, Lisa, and Meriah). I'm not alone in this, and it really helps.

So let me end with another quote from my book:

George says that Laura isn’t qualitatively different from any children.  He writes, “Anything can happen.  We do what we would do if they had the same number of chromosomes:  we try to prepare them for the future we don’t know.”  When Maybelle was born, I didn’t know about the “perfect child.”  As she became a human being in my world, things became different.  I try to prepare her for the future, and it became clear to me that preparation has nothing to do with being the perfect kid.  I began the process of releasing my hidden beliefs about childhood and parenthood. It’s about loving who we have.  Recognizing that the world is full of diversity, and inviting diverse people to the table.

Re-entering the larger world

I've been going to campus almost every day for the last two weeks.  I've been making myself a presence--something that's been scary to me and an important recognition for other people.  I look different.  It often takes colleagues a double-take when they see me.  And then they're welcoming, asking me how I am.

LH mercy they are so good. I want to go eat some
right now.

This week one colleague/friend held a welcome back drop-in at her house. The house was full of wonderful people and freaking delicious food, plate after plate.  Like my efforts to go on campus, this event was another way for me to connect to my colleagues and friends.

As I put away tart after tart from Sugar, folks would tell me that it's clear that I have more energy now than I had earlier in the fall.  For instance, in October I did a big interview as part of becoming a full professor.  Colleagues who were part of that process said that I did a great job, but that they could tell how I tired I was, and how I was having to push myself.  I went home and fell asleep after that interview.

I'm no longer that person.  I haven't taken a nap in a couple of weeks.  A couple of weeks!  I've been working effectively on plans for next semester's classes.  I'm reading things related to chapter 6 in my book.  I'm planning a couple of additional interviews for the book.  I've been connecting to my friends more effectively.

I'm feeling more and more like myself.

I'm sorry you can't see my shirt.  A flow-y t-shirt that my mom and I bought
on sale, for like $12.  But you can see MY EARRINGS!  I'm trying
all kinds of new things!  Probably haven't worn any for 8 years.

And sometimes I'm an exploratory self.  For instance, last night Brian and I went to a holiday party that CofC has been holding forever and forever, but I've never gone.  Just didn't seem like my style.  One collegue calls it "the prom," and when I heard that, I recognized that I've never gone to a prom.  The prom wasn't for the funky high school kids.  When my senior year prom rolled around, I found it far more important to try to drag my boyfriend away from his girlfriend, an entirely inappropriate, desperate, mean series of efforts.  Hurray, prom night! (Sarcasm.)

So at age almost-42, I tried it again.

Not bad!  I had a total of two bites of food because I just kept talking and talking, to former grad students, colleagues, folks I know only vaguely, and Maybelle's beloved ECDC teacher.

Here's how the conversations went:

"Alison, how are you?"

"I'm doing much better.  I'm grateful to be back at school, and getting ready for next week's classes."

"You look great!  Your hair looks great!"

This was a moment when I needed to decide how much information they wanted.  With a couple of people, I had them check out how quickly my hair has grown on my neck--you can see the amount of hair that's responded to being shaved.  A lot of hair.  And you can compare it to the hair on the left side of my head and it's growing, but very slowly.  I'm not sure if that's what they wanted.

"And how's Maybelle?"

This is another point where I didn't know what to share--do they want the real story ("She's had a challenging several months.  All kinds of changes.  Fighting with my mom because that was the only predictable/safe place.  Etc.") or the normal one ("She's great!)?

And then it was sort of surprising to hear from almost every person, "I read your blog, so I've been keeping up with how you're doing."  One person said, "I read the article from The City Paper, and I never cry, but that article made me cry so much."

Oh.  Well, maybe they all wanted the in-depth interview.  Or maybe they just want to touch base with me since they know a million things have happened since they've been reading.  That made me realize that I haven't been able to do much blogging in previous months.  But I'm feeling better now, so I can blog.

I'm so glad I got to see so many of you, to have so many hugs.  I'm glad to be back on campus, to have a seat at my desk, to snuggling into the Starbucks chair as a space to read.

Here I am!

Yep, once again it's SJH

Slightly different visual image I've used
from SJH in previous years.

It's already 4pm in Cookeville, TN.  We've eaten round one of our turkey and gravy.  We've made a big bowl of whipped cream, and our three pies are on the table, waiting for us.

And my family said, "Aren't you supposed to write something for that person you write about on Thanksgiving?"

Yes!  So here I am, sharing the importance of a woman who was one of the most powerful people in the 19th c.  She was an editor, writer, etc, and although she had troubling characteristics like a lot of her cohort (white privilege, anybody?), she also tried to make the world around her better.  Her name is Sarah Josepha Hale.

There are loads of powerful and culturally significant things I could tell you about SJH.  Every Thanksgiving I bring her to the blog because she's the one who made Thanksgiving a national holiday, and it's time for another nod to this woman.

For 25 years, she wrote letters to the Presidents.  She was like, "July 4 is a great holiday, but it's the only one we've got.  You know that it would help our national unity if we had one more holiday, at a different time of year, that has symbolic connection to the founding of our country and all that."  She said, "You know that everybody loves turkey, and people need an excuse to eat a ridiculous amount of pie.  So come on."

Because she was the editor of Godey's Ladies Book, a magazine that was so famous that it makes famous things today look puny by comparison, people paid some attention to her.  And in 1863, Abraham Lincoln said, "That SJH has a good idea.  This Civil War's got everybody down, and pumpkin consumption is on the decline.  The sweet potato lobby has been pushing for more support.  So what the hell:  let's make Thanksgiving a national holiday, on the fourth Thursday of November every year."

And here we are:  we're celebrating Thanksgiving, but most of us don't consider that this is a holiday someone's been lobbying on for more than two decades.  We need to acknowledge the efforts of Sarah Josepha Hale.  Many of us now have the day off (not, of course, employees at gas stations or Walmart).  We have unbelievably good food--in my case, two of my favorite foods.

And most importantly, we have the opportunity to reflect on what our highest priorities are.  What happened this year?  Who are the people who've provided support for us, or who we've been able to support?  Are there moments that will be part of our memories forever?  What matters most in November 2014?

New haircut that is FANTASTIC

I'm making some serious progress with chapter 6 in my book.  I'm having this sense of here I am.  Satisfying.  Satisfying.

I'm working on a column for the City Paper, a column that will--wait for it--deal with something other than brain tumors and radiation!  It will deal with political issues, one that's quite impressive and one that allows me one of my favorite kinds of writing:  I'll get to be outraged.

But I'm not going to give you excerpts.  Instead, I want you to see the haircut updates I had done yesterday.  This seems to be hair that requires no attention.  I woke up this morning, patted my head, and there you go:  done.  Plus, this hair isn't at all girlish.  It doesn't have the "I'm a really sweet middle-class mom."  Instead, my hair says other things.  "How's it going ?" (that would be my hair not being dramatic), "Is she a woman?", and my favorite, texted to me by a friend:  "Baller."

This picture is fine.  But the next one is better.

You can't see it in this picture, but Maybelle has lost a tooth! More on that later.

The last post I've written since Oct. 12. Mostly pictures.

Getting through the motherfucking radiation has been a shitstorm.  In the last couple of weeks, radiation kept feeling worse and worse and worse.  I started having to take Zofran every eight hours to counter the nausea.  My neuro-oncologist gave me some suggestions for pills to take in between those eight hours, and I started taking them, too.  I took Advil because a side effect of anti-nausea pills is a headache.  Plus, having my head filled with radiation and stuff every day caused some pain, too.  Sleeping hours a day.  Unable to identify my hunger.  And when a doctor has presented every single aspect of my health care phenomenon, they've informed me that it causes constipation.

Radiation = doing lots of good.  And sucks.

Here's what my head looked like while I was going through radiation:

Every time I took a shower, or even touched my head, quantities of hair would come off.  That's some serious hair.  That's my head saying, "Abandon ship!"

On October 30, my radiation stopped.  I was done.  Done.  I was celebratory!  Here are the ways I documented that day:

The calendar that tracked the process.  I got to cross off every day that I completed radiation, and then I got to recycle it on Oct. 30.

The container of Temodar, my chemotherapy, EMPTY!

I kept these near me at all time so I did't forget to take the magical Zofra half an hour before I took the Temodar.  So satisfying to throw that baggie away.

When Claire escorted me out of my last radiation session, she talked through several food options we might use to celebrate.  Muffins?  Blech, no.  Cookies? Blech, no.  Hot dog?  Why yes, I think that would be delicious!  And it was.  And the nice hot-dog-selling-guy took our picture.

Plus, I got to ring a bell at the radiation center--sounds goofy, but actually was satisfying.  The man ahead of me rang it, too, and it felt meaningful to have even the smallest recognition of having gone through that challenging experience.

I made these cups for some of my friends:

Leigh has excellent "I hate everything" skills.

The next day, after a Halloween parade with Maybelle's class, mom and I went to a salon, where they dug into my hair.  I didn't know exactly what I was looking for.  This?

I wish.  Cool hair AND a Storm Trooper.

I didn't know.  All I knew was that I was going to have less hair than I'd ever had before (an article about this in the Charleston City Paper).  As I told one friend, the last time I had this small amount of hair was at birth.  I thought I'd have a little bit of grief.  I was prepared to feel the loss.

Instead, I was like, "Yes.  Cut all that hair off.  All of it!" Eagerness.  No grief.

They wouldn't cut all of it yet.  As one of my friends had pointed out, and as this salon person also noted, is that if they cut all my hair, there's not a damn thing I can do.  I'm stuck.  So instead, she tried a hair cut with some actual hair, and told me I should sit with it for a week.  If I still want my hair, come on in and they'll mess with it.

Here it is:

I think it's pretty cool.  But I might have them cut off more when Maybelle and I are back in Charleston.  Part of my head still presents brain-tumor-revelation, as it should:

But the new hair also looks like I might be…stylistic.  Professional.

There are so many things I want to share:  Maybelle struggling with the changes she's experiencing.  The ways in which I continue to feel shitty.  How difficult it continues to be for me to ask for help.  My fucking fury that I might not be able to do the things I'd (foolishly) planned for this semester.

But it's taken me four days to write this blog post, so I'll stop for now.

Effects of radiaton

Here are the things I'm eating these days:

• Granola
• Yogurt
• Popcorn (NOT the microwave kind)
• Clementines
• Apples with Jif peanut butter
• Bread with Jif peanut butter (only the kind of whole wheat bread that my mom buys)
• Sometimes chips and salsa, although thinking of it right now makes me feel a little sick.
• Ice cream

This is one of the effects of radiation.  Anytime I'm hungry--or feeling the mild sickness that makes me suspect I'm hungry--I go into the kitchen and wander around to learn what's edible at that point.  It's fortunate that the things I'll eat give me a fairly decent diet. That's not a choice--just luck.

And yesterday the left side of my head had become one huge swirling tangle.  I intentionally and aggressively combed out that tangle, and here's what happened:

Notice that there are two 8 1/2 x 11 sheets of paper here.

Hair is falling out all the time, so I carry a Rubbermaid container around to places where I sit.  The only reason I care about my hair is that I'm having an important meeting on Oct. 21.  But I'm meeting with nice people, so I suspect they'll realize that there's nothing I can do about this.

When the radiation ends and my body starts recovering, I'm going to cut off all my hair.  And eat all the favorite foods that my body currently is rejecting.

Good things and...challenging things

Good:
I just got mentioned extensively--and fairly positively--in something called The Week, and initially I didn't read that because stuff that has pictures of tiny babies usually uses my work as horrible stuff, and I just don't read it (blah, blah, blah, supportive of reproductive justice, how terrible Piepmeier is, blah).  Apparently this magazine is cool, though, so have a look.

Challenging:
I pushed my mom to go home, refusing to recognize that I'm in the most physically challenging experience of my life (hello, radiation treatment--you are exhausting!  I mean, really, really exhausting!)    She seems willing to come back in 10 days.

Good:
My mom is willing to return.

Challenging:
At that point I'll have three weeks left on the radiation, and I'm struggling with asking her to come back.  She has a billion friends in Cookeville, where she lives!  My dad doesn't come move in with me!  Three weeks is a long time, particularly considering that she's been with me since August 15 (with significant breaks when my friends have come to stay with me).

Good:
Friends have stressed to me that if anything in the world happened to Maybelle, I would be there for as long as she needed me there, no question of it.  And of course that's true.

Challenging:
Have y'all noticed how much I'm willing to push myself?  To prove that I can do this?  Both to kick into my anxiety right now, and to show the world (mostly myself) that I am okay, recovered, able to be a professional?

Good:
Because I had brain surgery and I'm having brain radiation, I'm not experiencing pain.  If I do have pain, Advil cures it.  And if I feel nauseated (which happens a lot), I take Zofran which is a miracle. I have the kind that dissolves under my tongue, and I'm feeling okay in about 15 minutes.

Challenging:
But I'm recognizing that this is the most challenging physical experience of my life.  See challenge above.

Good:
Maybelle's kindergarten class is so wonderful that I want to throw myself on the floor with joy.  Maybelle feels that way, too.  Hurray for you, ECDC!

Challenging:
I'm too challenging in the mornings to take her to school. I'll be going to bed very soon.

Good:
I love writing.  Love it!  I have a blog to write on, and even more importantly, I got some fantastic and very helpful suggestions for my book--my book!--that will allow me to keep working on the book I really love.  I have an introduction and chapters 1, 2, and 6 in progressive states.  Woo hoo!

Maybelle is focusing on her feet because she's determined
to learn to peddle her part of the bike.

Challenging:
I'm just so tired.  It's taken me three days to write this blog post.  It's taken me five days to address possible revisions for my book.

Good:
Maybelle and I still remember how to ride the bike!

Challenging:
Mild expressive aphasia.

Good:
My neuro-oncologist assures me that this is temporary.  Caused by brain surgery and radiation.

And now I'm going to bed.

Kicking my ass.

I've now had two experiences of radio therapy/radiation therapy/something that multiple doctors have described.  And it might be fine, might allow me to have as much energy as I've been having.

But right now it's kicking my ass.

I'm so tired.  I feel like I could sleep much of the day.  I could wake up to play with Maybelle in the afternoon and evening, but for the last today it's been a real question about whether I should go to bed at the same time that Maybelle does (7:30).  Last night I went to bed at 8:30.  Unfortunately, Maybelle decided that 5:00am is a great time to get out of bed, so I'm downstairs guzzling coffee.  Coffee is delicious.

But I'm so tired.

Radiation therapy does't hurt, so that's a plus.  But it's messing with my ability to talk.  I can still talk and write, but it's clear to me that both are more challenging.  For the last two days I've forgotten how to say certain nouns, and I've had to describe them to friends.  My life is almost like charades (a word I had to look up before I could writing it here).  This is a common reaction--nothing to work in a frightened way.  And my friends are saying it's fine.  But it's making me frustrated.  Grouchy.  Who the fuck am I when I have a difficult time talking?

I'm incredibly fortunate to have people come to stay with me.  Thank you, Mama, Catherine, Eliza!  I'm incredibly fortunate to have friends taking Maybelle for big chunks of Saturdays (thank you, Cindi).  I'm incredibly fortunate to have friends who make food (thank you, Andrea and every body who delivers delicious dinners).  I'm incredibly fortunate to have friends who take me for walks, go get my groceries, pick Maybelle up and take her to dance class and bring her down.

Etc.  I can't list everyone.  I have a group of supporters who are amazing.  I'm grateful.

But I'm so tired.  I foolishly agreed to assess two academic articles.  What was I thinking?  Last week I could have done it.  This moment:  no way.  I'm having a hard time doing almost anything (although look:  I'm blogging.  I part this is because I plugged Maybelle into her iPad, and I'm trying to keep myself awake.)

So here's a positive picture:

Muffins

So, so many of you have read my article for the City Paper, made up of some blog posts and some journaling about my experience of my brain tumor and brain surgery.  I feel good about the article--it conveys thoughts and feelings of mine that weren't necessarily easy for me to identify.  (I'm freaked out by my huge head on the cover, though.  Really freaked out.)

The surgery was 28 days ago.  I've been home since Sunday, August 17, with two live-in caregivers:  my mom, then Catherine, then my mom again.  Every late morning I feel exhausted--I might look like all is well, but people who are close to me (mom and Catherine, for instance) recognize how my smile changes, how my eyes become a little dim.  And then I go nap for three or four hours.

As the days pass, I've been able to stay up a bit longer in the afternoon, and a bit longer in the evening.  And because of this extra time, I've discovered something that's soothing to me as well as...what...creative.  It almost allows me to feel functional.

I make muffins.

Muffins are easy to make, unlike pies.  You mix dry ingredients and wet ingredients, then you mix them together (not much! Only enough to get all the dry parts wet).  You put them in the muffin tin and bake them.  And there they are:  muffins.

Banana buttermilk muffins.  With
brown sugar on top.

So far in muffin-experimentation I've made blueberry, pumpkin with pecan topping, doughnut muffins, and chocoholic muffins.  Then I tried a different pumpkin recipe to compare to the first.  Hard choice.  Today we had bananas that were turning significantly brown, and buttermilk that was running out, so I made banana buttermilk muffins.  Later this week I'm going to try a batch with cranberries.

I eat several muffins after I make them, but my delight doesn't really seem to be about eating them.  It's about making them.  Smelling them--they send all kinds of great aromas throughout the house.  Watching them become more solid in the oven.  Appreciating how they look sitting on the kitchen counter.

You should also know that the real food--protein, veggies, etc--are made by my friends and neighbors.  Even if my intent were to get a full diet through muffins, I believe my friends would be critical. And rightly so.

But back to delight:  my delight speaks to me about where I am right now.  How my life is.  I spend most of every day in my house, which smells delicious.  Maybelle spends her mornings and her evenings with me, but I'm in no way cut out to be a single parent right now.  Things are changing little by little with what a day looks like--for instance, my mom and I walked for two miles yesterday and today, and it felt great (and this is something my doctors want me to do:  exercise as much as I can).  But things aren't changing dramatically. Healing is a process.

And it's a process that continues to be a sort of gift.  Much of the background stuff in my life has been pushed away for now.  I don't have the energy to be the administrator to the Women's and Gender Studies Program (and fortunately the person who's doing it is amazing).  I don't have the energy to make plans--even to answer emails on a regular basis.  It's exhausting for me to read things that are difficult (so I'm reading romance novels--fun!).  Right now I often can't understand formal descriptions of life at a university--stories, yes, but not detailed explorations of how these kinds of places operate.  These lacks of connection don't feel like problems; they feel like my opportunity to identify what really matters to me.  My life has focused:

• I love Maybelle.  This one's easy, of course, and my time with her isn't distracted.  I'm able to sit on the floor with her and play with her girls, or sing "Row, Row, Row Your Boat."  I sit on the porch with her early in the morning.  These days she looks for stars.
• I love the women whose care surrounds me at all times.  Okay, for 30 minutes I've been thinking about this gender thing.  I don't think that someone has to identify as female to be such a powerful source of support for me, but the people who have moved in with me, who are with me every day, who take me out for coffee, do identify as women.  I think this is significant, but I suspect that's going to become its own blog post.
• I love the opportunity to follow my needs as a day progresses:  to sleep, to wake up and make random lists, to feel my energy changing little by little.  To think about my book project.  To be curious about the feelings that are emerging and changing.
• I love sitting and eating the wonderful food my friends make, sitting with my mom or with Catherine or other friends.  These meals allow us to talk, but not in ways that are deeply controversial--particularly when these controversies relate to the world in ways that aren't connecting with me.  I sit quietly then, or I'll switch the topic to something I do care about:  How was your day?  Do you want to hear what I want to write about when I'm able to? How are you feeling?

It does seem that right now, making muffins is an ideal activity.


*Editorial work:  It's taken me three days to write this.  So:  I'm still recovering.

One week anniversary

I suspect at this moment seven days ago, I was lying in my bed in the ICU with bandages and needles all over me, with the medical team trying once again to figure out how to keep me from throwing up.  Or maybe they'd finally gotten it right and I was asleep.

For all morning and quite a bit of the afternoon one week ago, I had brain surgery.  Successful surgery.  Exactly one week ago.

Family and friends sat in the waiting room.  Waiting, waiting for hours.  A really kind friend who lives in North Carolina did exactly the same calm, thoughtful generous thing that she did four and a half years ago, when I was having this surgery:  she brought a delicious lunch for everyone who was trying to distract themselves.

Meanwhile, I was talking--unable to feel much pain but conscious and able to read word cards, identify basic images, even talk about Maybelle.

All you readers know this.  It's not new.  But I find I want to get it out of my body a little bit, to sit back and be able to see it from a few inches away.

I've just taken a four-hour nap, which means for a little while I can communicate by writing--using words without the kinds of gestures and body language that help my mom to be able to nod and understand exactly what I'm trying to say.  My language is and will be really fucked up here, as I was warned by every medical professional I encountered.  Fortunately, the language tangles are temporary--just part of the process here.  But for now, if I want to be in touch with people via any words, I have to have rested really well immediately ahead of that effort.

And now that I've rested and given you a bit of my post-surgery reflections, here's what happened this morning.

Mama and I went to Wildflour this morning to get the mini cinnamon rolls mom ordered for Maybelle's birthday party at school.  Today isn't her actual birthday--that's Sunday--but the timing worked out so that this was her celebratory day at ECDC.

As we took this picture of ourselves, I realized that it's been more than a week since I've had a moment like this:  sitting in a pastry/coffee shop, having a cinnamon roll ourselves as we waited for it to be time to head back to school.  It felt like a new kind of real life, like, "OH, right--this is the sort of thing my life can look like!"

On the one hand, I've barely been out of commission at all.  After only seven days, I'm able to go out to help with my daughter's birthday gathering.  And at the same time, it feels like a world away.

It didn't take me long to recognize a crucial component of my morning birthday celebration:  I had a second cup of coffee at 9am, and that meant I was able to stay awake--barely--during Maybelle's celebration.  It was another kind of realization:  this is an easy thing that adults do all the time, have a second cup of coffee.  And yet it feels both familiar and bizarre at this moment.

The birthday celebration was wonderful.  The class sang a series of songs to Maybelle, and she got to march and dance and circulate the room.  I'd written her a little book this morning about her birthday, and she read it to her classmates (very nicely, I must say).  She seemed to have just about the best morning imaginable.

Then I went home and slept.  I'll get to spend the rest of the evening being an exhausted, but happy, mother and daughter.



- - - -
Previous posts about tumors, choices, etc:

• Go home, said the man in the moon, go home.
• Two penguins walk into a bar.
• Gratitude. And pain.
• Guest room
• "You are AWESOME!" "No, YOU'RE more awesome!"
• What's the story, morning glory?

Go home, said the man the moon, go home.

This is me looking good.  If you want to see the nasty
stuff, scroll down to the bottom of the post.

Look at me!  As 97% of people on the planet (most of whom are on Facebook) know this, but to be sure that this fact is widely known:  I'm home!

Hundreds of you have been supporting, loving, and sending all kinds of good stuff my way...this has really meant a lot to me.

But even as I sit in the luscious sofa in my super-comfortable home, one of the things I've learned is that I'm having incredibly bad language skills. I'm not speaking or writing particularly well (although my mom actually said I'm speaking better than writing. Evidently the thoughts aren't translating to the written word as well as I think when I'm writing them.) Therefore my mom is taking down this blog post from my dictation.  It's a new kind of blogging for me.

The vague messiness about my communication is another weird moment in my life, which, I guess, is always to be expected when you have brain surgery. Dr. Friedman removed a quarter of my skull and dived into my brain. This time I was quite awake for the surgery, so when it was time for me to read cards or talk about Maybelle to the speech guy, I could. And I can still remember the basic words I was supposed to be able to demonstrate (like seeing a picture of a duck and saying, "Duck").  I'd also coached speech guy to bring Maybelle into the conversation since she'd be a very motivating factor to make me want to stay there awake.  Dr. Friedman did some surgery, then he brought out the in-room MRI to see what other bits of tumor were still there, then he dived back into my brain for another round.

Later Dr. Friedman came my ICU and said he'd gotten more than he expected: almost all of it out.

The 6+ plus hours of my surgery were great, and then they were followed by to a lovely experimental process.  Nurses and PA's were doing anything they could to get me to stop my extensive vomiting.  They worked on this effort for 3-4 hours, shoving multiple things into my IV, but only when they gave the third medicine more than once was I able to curl up in the ICU and rest.  As it turns out, though, I was doing so well they released me to the hotel straight from the ICU on Saturday, the day after surgery. And then said if I were doing as well the next morning I could go home to Charleston - which we did!

Yow--that's ugly!  But all kinds of
stuff healing.

The funky-ness of my language hasn't yet become distressing, but that's because they told me that it was to be expected, and it will go away - fairly soon.  For right now it's good for me not to be solo in a conversation...for instance my mom has said to me, "Honey, you've used the word 'intimate' three different times, and it doesn't apply to any of those situations." It's good I got the semester off from teaching, because the students would have thought it was hilarious.


We got to Charleston Sunday afternoon -- WAY before we thought we would. In general I'm feeling pretty good. Maybelle is thrilled that I'm home, but let's face it - she's far happier about seeing her Nonni.

Two penguins walk into a bar

This isn't truly a grouchy face.  I was falsely
grouchily showing off the plastic knobs on my head.

My brain tumor surgery is tomorrow morning.  Starts about eight hours from now.

So for that reason, I'm offering a slightly more upbeat post.  I'm not going to be falsely cheerful, but I'll share a few things that aren't entirely focused on fear/danger/pain.  Instead, I'll tell you other aspects of this process.

For instance:  last night my mom and I arrived at our very nice hotel to get ready for today's 8:30am pre-op process at the Duke hospital.  I went out to the car to get my suitcase, which not only has my clothes, toothbrush, and books, but also my medicine.  The seizure medicine.  Which I have to take every morning and night.  The suitcase is fairly important.  So here's evidence of how freaked out I am:  the car was empty.  No suitcase.  I carefully packed it, then left it at home.  Because mom and I were able to get replacement seizure drugs at CVS, the situation was funnier than it was distressing.

And here's another example:  After I wrote about gratitude and pain the other day, I've gotten probably 20 emails from students telling me how important I've been to their lives--in ways I wasn't aware of.  Plus, as I'm sure you've noticed, there have been some powerful comments on the blog (Robin Bowers, I'm talking about you) and on Facebook (SO many of you have written things that have moved me).  Wisdom.  I'm trying to breathe it in.

Freaking delicious.

And another:  after I went through a series of exciting pre-op activities (urine test, blood test, EKG which required a guy to put all kind of pasty stickers on my naked boobs), mom and I were told by multiple staff people--including the admissions person--NOT to be admitted until we'd had some good food to eat.  "Once you have your bracelet on you can't leave," they sort of whispered, "So go now!"  We went to Nosh and I had a fantastic brunch:  French toast with peanut butter and bananas.  The best food I'll have (and have the appetite for) in days.

And finally, I'd like to celebrate friend-from-afar, Kris.  She became part of my life five years ago, when I was diagnosed with a brain tumor, because she'd had one recently, and a women's studies friend had connected us.  The brilliant thing she did was text me with jokes every day leading up to the surgery. She's doing it again!  It's fantastic.  I'm eager to read every text she sends.

So I'm going to offer two.  #1 is my favorite.  #2 is most appropriate to this evening.  You can read either or both--your choice.

#1:  Two penguins walk into a bar.  The third penguin says, "Huh--you'd have thought the second one would have seen it."

#2:  A brain walked into a bar.  "I'll have a pint," she says.  "No way!" says the bartender.  "You're out of your head!"

- - - -
Previous posts to give you background:

• Gratitude. And pain.
• Guest room
• "You are AWESOME!" "No, YOU'RE more awesome!"
• What's the story, morning glory?

Gratitude. And pain.

I’m in a moment where I’m surrounded by generosity, from people locally and afar.  Surrounded.

Enfolded.

Do you want to make Maybelle happy with food?  Bring
Wildflour cinnamon rolls, her favorite food of all.

Is it worth listing some of what they’re doing?  One friend has taken charge of the offers of food.  Wonderful local friends, and people I barely know, want to bring food to help me recover.  They want to create something in their own kitchens, the kinds of luscious meals they wouldn’t usually fix for their own families or themselves.  Andrea established a calendar that will schedule just as many meals as I need, meals that will arrive not only in my immediate days of recovery but in the six weeks of my radiation, too.

Leigh and Claire are making it possible for me to go through the process of being promoted to full professor, which is happening this fall—while I’m recovering from brain surgery.  I’m creating all the main components (my narrative, copies of the things I’ve written, student papers with my comments), and they’ll organize this stuff and put it all online.  It’s a chunk.  Hours of work.  And they’re doing it.

Administrators here are glowing examples of exactly what you’d want:  supportive and happy to make this work in whatever way they can.  I will be on medical leave all semester.  They’ve made that clear.

And Leigh created a site on Rally.com for Maybelle’s Fun Fund.  People from anywhere and everywhere can donate money to help support babysitting.  I’m single and will need help.  My mother and best friends are taking turns being live-in support, but they can’t do it forever.  So I’ll have the funds to invite babysitters—people Maybelle adores—to come help.  This site is growing and growing.  As I’ve told Leigh multiple times, this is amazing.  Amazing!

I’m getting emails from students, former students, colleagues, friends who are offering their love and prayers and good vibes.  They’re asking what they can do—they’re recognizing possibilities and are responding.  They want to be with me. I’ve gotten emails from colleagues across the country who are sharing how much they’re thinking of me, the work they want to do with me when I’ve recovered. I’m hearing from students I worked with very, very closely a year ago or a decade ago—students who've such a great part of my life.  I talked with an alum yesterday, a student with whom I worked very closely while she was with me.  She wanted to hear my voice, to hear me saying how shitty things are.

And I said it. Things are shitty.  Everything is triggering pain.

Is that fair?  So many people reaching out.  So many people sending love.  And I have fucked up feelings.  I guess the more appropriate way to say that is that I’m experiencing complex feelings.  But they’re fucked up.

I feel guilty:  I don’t deserve this, this much generosity.  It’s more than I’ve ever experienced before.  Far more.  It’s coming from so many places, so many times.  People I’ve never met at Trey’s workplace are sending money.  People I’ve never met who are friends of my mom’s, or single moms who’ve heard about me, or friends of the many friends on Facebok.  I can’t possibly deserve this much.  What in the world could I do to be worthy of this?

And if I’m not guilty, if I do in fact deserve this generosity, then it can feel like evidence that I’m going to die soon, that the brain tumor will kill me.  The beautiful words that people post online and send me can feel like obituaries:  “Alison transformed my life.  I’m so grateful that I got to work with her.” “Let’s raise money for Maybelle, since Alison won’t be with her long.” “We’ll feed her while we can, because she’s on the decline.”

Let me be clear:  nobody is writing these things!  Nobody’s writing an obituary.  Almost every message ends with some version of, “You’re going to do great!” “Kick that tumor’s ass!” “I can’t wait to get together once you’re feeling better!” But sometimes the upcoming death is what I read, what I see and hear.

It’s painful. This moment is excruciatingly painful—not physically, but cognitively.  Emotionally.  It’s three days until my surgery, and I’m feeling vulnerable.  Afraid.  Sad.

The generosity is crucial—it’s holding me up.  And I’m still in so much pain.

"You are AWESOME!" "No, YOU'RE more awesome!"

For the last six years Leigh and I have wanted to become actual friends--not just "let's have a cup of coffee during the workday" friends.  This year we've done it:  we've eaten dinner together at my house.  Her family has met up with me and Maybelle at a fountain at one of the county parks.  She and I have had at least two lunches in which we've discussed shitty, shitty stuff.

One important part of that is that when I share truly shitty stuff with someone, then they're moving into another layer of friendship.  I'm very good at pretending all is well and then going home feeling incredibly sad and nauseated.  So here's Leigh:  getting the sadness and nausea in person.*

People have been generous and wonderful when they learn about my brain tumor, surgery, radiation.  I've had people make me feel incredibly warm inside when they tell me they will do anything I need.  The problem is, as I often respond, is that I don't know what I need.  I tell folks that I'll let them know when I recognize a need.

But I've had a couple of people who've been especially helpful, because instead of offering help, they offer a specific thing.  Here's what Leigh offered:

https://rally.org/maybellesfunfund

Ridiculously cute matching outfits.  Maybelle loves
Chantelle.  Like, LOVES her.  Is happy to dismiss me
when Chantelle arrives.

It's a website she created to raise money for the babysitting I'm going to need for months and months.  For instance, in order to get things done for the trip, I'm spending $190, plus another $200 for the student who's spending a night and two days with Maybelle.  Babysitting isn't cheap, and because I have the best babysitters ever, I want to be sure they're paid.

Although my mom, Catherine, and Eliza are taking turns doing live-in time with me, but that won't last forever.  The radiation lasts for six weeks, and I suspect I'm going to need help. So one thought was that Chantelle and Anthony could spend the weekend if I'm feeling particularly exhausted. I can come in and out, but they'll be responsible for taking care of Maybelle.  Stuff like that.

I feel a little weird putting the word out about this...but here it is.  The word.  From the comments I'm getting on the blog and on Facebook, it's incredibly clear that many of you want to help.  And Leigh's created a way that you can.  Sending flowers can be a sweet, sweet gesture--but getting me some help to take care of Maybelle as a single parent with a significant medical issue?  That would be beautiful.

*I don't give a good enough representation of Leigh here.  The reason I feel comfortable being nauseated around her is because she's awesome.  Really.  And she wrote this book.

Guest room

I am now six days away from heading to Duke.  My mom will be arriving at noon on August 13, and then she and I will hop in the car and head out of town.

Six days away.

On Monday I went to Duke and talked with my neurosurgeon and my oncologist.  Both were actually quite encouraging about priority #2, my language:  they said that I'll forget people's names, even if I've met them multiple times.  The radiation that'll happen after the surgery will mess with my short-term memory, and that won't go away.  But both said that this is about it.  My language won't drop to the level of a fifth grader.  I won't even have to do what Eliza was suggesting:  lose all German!  You don't need Shakespeare anymore, so have him cut it out.  What about childhood songs?  Let them go!

I was really relieved about that news.  I'll still be able to speak, to interact, even to write.  I may have to apologize and explain why I've forgotten what someone just said, but I'll figure out a strategy to make that work.  I can explain this disability (and if you have suggestions, have at it.  Share your thoughts).

Having priority #2 addressed didn't eradicate priority #1, though:  being alive for Maybelle.  Of course no one could explain that one completely.  It's a mystery.  

But I got some frightening answers.  My neurologist doesn't seem to have good interpersonal skills, because he gave me a time frame that wasn't worth celebrating.  After that I met with my oncologist and her nurse practitioner, and they were much more encouraging.  The nurse practitioner seemed to be an expert about coaching, telling me all the things about me that contradicted neurosurgeon thoughts.  My oncologist and her team are the ones dealing with all the post-surgery stuff, so they had hopeful thoughts.

Radiation.  New, more aggressive chemo.  An even more aggressive kind after that, if need be.  All kinds of options.  No need to panic yet.

As if I can simply turn off the panic.

There's so little I have control over, of course.  I'm going to have surgery and do what the surgeon says, and then what the oncologist says.  I have instructions, and I'll follow them.  I have no control over this tumor and what it does.

For that reason, I am going a thousand miles an hour in my house and at work:  cleaning and getting rid of things.  Taking huge piles of things to recycling bins.  Talking with all the people who are supporting me at work:  my dean, Human Resources, the new interim director of Women's and Gender Studies, the chair of the WGS Community Advisory Board.  Aligning all the bits and pieces of my portfolio for full professor, like talking with my editor.  Making plans for who'll take care of Maybelle while I'm gone (trust me, this process took days and days and required me calling and emailing dozens of people.  But thanks for a host of amazing friends and babysitters, Maybelle's plans are now set).

The gorgeous guest room.  Come and visit!  You have
a place to sleep!

I'm in control of these things.

I was really excited to have the realization that my guest room was a piece of shit--full of unpacked boxes, random things that didn't fit into storage, a stapler, clothing that needed to go to other families.  And since several people are moving in in coming months, I decided to make that guest room not only functional but beautiful.  A comfortable, cleared out space to stay, so that when you arrive at my house, you celebrate how comfortable it'll be.  And how attractive.

That's the sort of thing I'm doing right now.  I have control over all of this.  Very good distractions.  While I wait.

What's the story, morning glory?

Phrenology: not what we currently consider
an accurate representation of the brain.

I haven't been blogging for a while.  Now I'm ready to tell you the story.

Just so you're prepared, the story ends:  in two weeks I'm having brain surgery.

Or maybe that's how the story should begin.

In two weeks I'm having brain surgery.  Four and a half years ago, on Christmas eve, I had a huge seizure, and in the hospital that night, my brain tumor was discovered.  Six weeks later, a wonderful neurosurgeon at Duke did surgery and removed a solid chunk of material from the middle of the part of my brain that controls language.  The surgery was a great success.  It stopped the remaining parts of the tumor from growing.  And when the tumor did start to grow a bit two years later, I went on a pretty easygoing chemotherapy, and that stopped it again.

There have been effects, of course.  Until my Star-Wars-loving neurologist got me on the right medicines, I had seizures, and I wasn't allowed to drive for years.  The surgery had small effects on my language and my memory.  I've probably already told you the story that characterizes my word-finding challenges, but here it is:

Within a couple of months of the surgery, I was in the car with Walter, talking about something, and I discovered a spot where a word was supposed to be, but it wasn't there.   

"Dammit!" I said.  "It's a word.  It means big, exaggerated, over the top!"   

Walter nodded.   

"I can't think of it!"   

He then said, "It starts with 'hy.'" 

"Hyperbole!" I announced, both relieved and a bit disappointed. I'd thought of the word.  But I'd needed clues.

When I told people this story immediately after it happened, almost everyone tried to encourage me by telling me that they didn't know that word to begin with!  Hell, nobody knows the word hyperbole!

But I knew it.  And the fact that it had disappeared was an effect of the surgery.  It's not a big thing--I'm  able to teach easily, to write, to maintain conversations.  I've published academic articles and a ton of columns for The City Paper. But I often have to start stories by saying, "I've probably already told you this, but..."  I often have to change my sentence halfway through when I realize that I'm approaching a word that isn't going to come to me.  I have to write things down the moment I think of them or they'll disappear.  I forget names, even names I know.

I get that everyone 35 and up reading this will tell me that they're experiencing this very thing.  And I hear this--and see it--from enough of my middle-aged friends that I acknowledge that it's true.  It's easy for me to blame everything on the tumor, and that form of paranoia isn't helpful.

And yet let me clarify this point:  other people have forgotten about my brain tumor.  Of course they have--its effects are minimal, and they aren't apparent to other people.  But since December 25, 2009, I've thought about the tumor many times a day.  I blame things on it i part because I never forget about it.  Sometimes I'm aware of it simply as part of my body, while other times I fear that it'll grow and that I'll die.

Now it's growing.  I've made my uncle, who's a neurosurgeon, assure me more than once that this growth doesn't mean I'm going to die soon.  What it means is that I'm going to have surgery.  My Duke neurosurgeon is going to explore the remaining tumor, tumor that has infiltrated my brain tissue.  When he takes out tumor, he'll also be taking out part of my brain.  And as I mentioned, the tumor is in the language center of my brain.

 I asked my uncle how I decide:  if I allow the neurosurgeon to take out more of the tumor, I'll live longer, and I'll lose language ability--ability that in many ways defines who I am.  How do I choose?  My uncle said, "You don't choose.  You'll get both--language and being alive."  I heard what he said.  I wrote it down.

And this is still prowling around inside me, a question of my priorities.  My #1 priority, which I can recognize with no ambivalence, is being alive for Maybelle.  But language--talking, writing, thinking, being outraged, being passionate, being curious, being able to connect with the people I love--is a significant second priority.  So important that it's a millimeter below priority #1.

I hope that I don't have to choose.  I hope that the surgery will help me to have years and years and years of life.  And I hope that within weeks or months of the surgery, possibly with speech therapy and coaching, I'm back to being a person in love with language and able to use it.  If it's a few notches lower, I can accept that.

But how many notches?  What will that be like?  How can I choose?


*If you're interested in other posts about brain-tumor-land, here they are:

• Guest room
• "You are AWESOME!" "No, YOU'RE more awesome!"
• Gratitude.  And pain.
• Two penguins walk into a bar

Of course you can always click on the top of the blog to get the newest info/thoughts/etc.

Cooking

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.

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.