Monday, July 20, 2015

Speaking…hearing…focusing...

My communication is challenging and exhausting.

For instance, yesterday my student said, “Is it possible for us to move our research until next week?” 

“What?” I asked.

“Could we move our research to next week?” 

“I’m sorry, can you say it again?”

I had to ask her one more time to repeat what she said, then when I tried to respond to her, I had a hard time communicating.  “Okay,” I said, “let’s look at the…the…”  I struggled.  “You know, the thing,” I said, making my hands go into a square.  “A…not cracker.” I paused.  “It’s white.  It’s a place where you put things.”  

“Calendar?” my student asked.  

“Yes!”

My post-it still says "We are all doing the best we can."
In my mind I could see the calendar, could see it in my hands, ready to write.  But I didn’t identify useful words there—even my hands making an image was poorly done.  And my ability to focus on her enough to allow me to understand—that was challenging, too. 

I wrote on a version of this in the City Paper in February 11, where I shared that “it's hard finding the right words to say.”  At that point, I wasn’t sure how fully I’d be able to speak.  People listening weren’t worried, though.  My friends said emphatically, again and again, that I sounded just like them.  “That’s just being in your 40s,” said several people.

That was four months ago.  This week, I was talking with my friend Cindi.  “You know,” she said, “last time you were talking-- a couple of months ago--your voice was really normal.  I didn’t hear anything.  Your voice was like mine.  But this time your language is really challenged.”  Her comment wasn’t at all troubling.  Instead, it was validating:  yes, my ability to speak fucks.  I’m not making this up.

Speaking isn’t the only challenge.  So is my writing.  As is the case with speaking, I often know exactly what I want to say, but when I go back and look at what I’ve written, sections don’t make sense at all.  For instance, I’ve been interviewing a woman who’s invited me to her home this summer; she’s allowing me to interview her, her partner, and her son.  It’s an act of tremendous generosity.  She didn’t even mind that I was having difficulty.

In my notes from one event, I wrote, “Not the only, not the best, but a woman who was writing changed what we understood.  Her work wasn’t always knowed in a person way.”  Later I wrote that her son and his friends “have lived together 6 (??) for years in a wonderful, a place that is sup heps u/xxx but is also or home that is there and mainstream a beautiful house.” Because of this kind of writing, I generally go back and correct it, often multiple times.  I also have friends who go over it at least once to confirm that what I’m writing is appropriate and able to understand.  A friend has read over this very essay to make it legible.

I’m continuing to do chemo.  I go to Duke every six weeks so that they can examine everything.  Usually when I’m in some sort of professional role, it doesn’t matter how exhausting it can be—I will be impressive.  Weeks ago, the doctor would tell me that they weren’t really hearing the communicative challenges I was describing.  But at the last meeting, they understood.

“This is what we expect,” said Sharon.  “Your communication probably won’t get any worse, but you’re also not going to get better until you’re off the chemo for a while.”

That’s where I am.  Yesterday, my student was an excellent example of how I’ll talk, how I’ll wave my arms and need to figure out the words that were floating in the back.  The student knew what was up with me, and she worked with me.  

I’ll be teaching this fall, and I’m interested in what will happen.  I’m going to be confident that I can be make the important connections happen.  But I’ll be open to help from those who find communication easier. 

Saturday, July 11, 2015

Leia

I love her.
This morning I was lowering myself to the living room so that I could play whatever Maybelle was it she wanted.  As my butt was almost on the floor, I dropped my Leia coffee cup.

Happy ending!  She was not damaged by this event!  

But the whole experience helped me to feel things.  Yes, of course, I'm glad that Maybelle's fine in the process  Always #1, and Brian and I both spent good little bits of time with her assure her that this wasn't fault.

Then #2 was my attention to the coffee up.  Okay, if I'm going to be honest, Maybelle was immediately fine.  So my attention went to the coffee cup.

How long have I had this Princess coffee cup as part of my life?  Five years?  A decade?  Maybe.  Trey was the one he got it for me. Trey's mostly the Star Wars expertise in my life, even though his true love might go to Star Trek.  I have tshirts--shirts that many loved ones have given to me--but Trey has gotten most of them.  Those shirts are great.  But the most important gift is the Princess Leia mug.

It's more than my respect for the cup--although I do respect it, of course.  But this cup is doing more than that.  It's large.  I wrap my hands around it when it's hot coffee--it's the perfect temperature that lets me have the best moment of the day.  Leia feels confident and tough.  She will kick the ass of people who are standing in her way.  And when she's caught, she remains her strength despite facing attacks on her mind and her home planet--things that terrify or break her heart.  She's one of the heroes in the Star Wars world.  Yes, yes, we all have various kinds of critique we could make about Leia.  Trust me, I do this kind of critique in my job, so I can do it.

But the point here isn't for me to share my critiques, at least not today.  The point for me is ultimately Princess Leia's identity.  When I had the moment this morning that I had lost this cup, I realized that this cup, and the character it represents, is something I'm holding on to.  Clinging.  My body is unpredictable these days, so it's especially important to have my coffee cup and Leia.  I might feel tired, or nauseated, or just sad, and Leia's cup is there.  It gives me a grounding.

Monday, June 22, 2015

My brain

First, I want to acknowledge that this blog doesn't give attention to what this city needs right now, the acknowledgment of terrorism and fear.  Here's one of the things I've written about this.

This post is totally different.  It is my own recent experience, not related to Emmanuel AMC.  For the last couple of days my thoughts have been linked to my body.  This is because on Sunday, Brian and I drove to North Carolina, and this morning we went to Duke so that I could have an MRI scan of my brain.

The ending:  the tumor has stayed the same size, or there is a good chance it is shrinking.  The medical team was very happy with how it's doing.

I approve of the happy ending.  It continues to be my truth that if I make it through this chemotherapy,  my body will become stronger.  I will be able to live longer for Maybelle and, clearly, that's the success that makes chemotherapy worthwhile.  I feel like I can put up with anything as long as the tumor is shrinking.

I haven't had any ambiguity around that, thank goodness.  I'm not having to fight myself into that.  But even so, taking the drugs I'm taking does --as a loved one in my life put it--suck a penis.  Or with even more emphasis, it sucks a monkey penis.  The medicine has the good effect of keeping me from having seizures, but it has resulted in the following revelations at different times in the past few weeks:

  • I feel like shit.
  • Damn, I don't want to have to swear so much in order to feel like a human.
  • No, fuck it, I don't think I have room to feel like a human.
  • Am I mostly angry or mostly terrified?
Chemotherapy is lots of work.  

Other components of the brain tumor:  the chemo I'm taking is working well on letting the tumor molecules and cells and other components drift away from my brain.  That's wonderful, of course!  But I'm having the experience of my speech getting affected in somewhat dramatic ways.  For instance, my chemo started in October, and in the early months, I was hearing changes, but friends would say, "No, you sound just like me!  You don't sound different."  Now that I've been on this chemo for eight months, those friends say, "Yep, there's definitely a change in what you're saying."

My brilliant, amazing nurse practitioner wasn't surprised by this. She said that my ability to speak has been changing, but at this point I probably won't lose any more language or ability to speak.  She said I'm going to become more and more tired.  That I might decide that I want to teach class and then nap.  

I'm in the process--the beginning parts of my processes--of identifying what's going to be most significant during the fall semester.  My ability to speak won't have gotten worse (hurray hurray hurray), but I'll be so tired.  My teaching is--as always--a crucial component of my talking, reading, and thinking.  But this semester I'm  not sure what to do with that exhaustion.  Can I read three things a day to keep me in the loop?  Do I have my students play a crucial role in guiding the class?  I don't know what this is all going to be like.

So there you go.  Driving to and home from the trip, journalists talked about Charleston.  People from all the world want to see the grief.  As we learn more and more about the murderer, it's becoming clear to me that the people who've bee saying he's a terrorist were right.

It matters.  And it's so odd to be in a place in the middle of the the world:  groups that are determined to make it matter, to make sure that the world changes in meaningful ways after nine people were killed for daring to worship while black.  And in another place, I'm a small person whose brain we discuss every six weeks.

What does it mean?  A group surrounded by love in a church?  Me, with a tumor and needing an MRI?

There's no comparison.  It's felt so odd for me, like there's not space in my mind to deal with these two difficult realities at the same time.  But if I breathe and allow myself to experience them both, it makes a difference.

Monday, June 15, 2015

Pictures! Of super wonderful scholarly friends.

George, Rachel, and me
I love George and Rachel.  Go look them up.
I had a great time at the SDS.  I'm in love with George and Rachel, above.  George, of courses, is my NRP.  Rachel is my xo friend.

Amber and I and our soon-to-be-traditional performance
Amber and I.  Because we've done this twice, it's now what we do
traditionally.

At the Disability Rights museum
Meriah, her friend-whose-name-I-can't-remember, and I were going
for a walk and discovered a traveling museum about the Disability
Rights Museum.  

Eating together--hurray!
Our all eating dinner together.  I'm so glad!  Except that George wasn't
in the picture!  Crap.
Meanwhile, how do you think Maybelle was?

Water!
Thank you, Heather, for taking her to all her fun stuff.

Saturday, June 13, 2015

Day 4 of the Society for Disability Studies conference

This conference has been great.  First of all, there are a lot of impressive people who are impressive for a reason:  they are super-cool and offer up fantastic ideas.  George Estreich was on a panel that was being moderated by Rosemarie Garland-Thomson, and literally every person on the panel was interesting.  Often at academic panels there's one person that you kindly applaud for, but whose presentation is "Eh."  But there wasn't anybody like that at this panel.

I would tell you more, but let's move on to second of all.

Second of all, I'm getting to hang out with some of the people listed/alluded.  George and I have been hanging out, and I think my dream is finally true:  he's my non-romantic boyfriend.  He's as kind and sweet as he is brilliant.  Hello, George.  Welcome to stepping into a more important role in my life.

And, of course, I had two people I love.  They used to be students of mine, but now that they've graduating (a couple of years ago), I can tell them that I love them.  Amber and Beck, I'm delighted to get to see you!  And get to eat with you!  And xoxo!

There are other people who would fit this role, but let's move on to the third of all.

Food!  We've had some tasty food, including one of the chicken and waffle restaurants that has become standard and delicious in the south.  George (ahem, NRB) and I had dinner there one night.  At other places I've gotten satisfying coffee and bagels.  Got delicious breakfast with Amber and Beck. Got an on-the-street hot dog.  Eating--in fancy or low-key ways--is a satisfying part of conferences.

And here comes a satisfying part of conferences.

Three glasses of water lined up on the fancy table.  
In this picture, I wanted to celebrate the water I'd been drinking at a restaurant:  a fancy line-up of water.  I'd been drinking already, as you can tell.

Related, maybe: When one person asked me about my brain tumor, I felt like the table grew silent and our table of people were listening carefully.  I may be making that up, but in general my brain tumor gets people's attention even when I'm not thinking about that.

Okay, the electricity went out at the restaurant, and we ultimately had to leave.  Most of our dinner folks went off for later dinner, but I went back to the hotel.  Here's a celebration in my room:

I guess you can tell without me needing to
explaining everything here, right? My life.
There's more today.  I'm going to get more photos so that you can see more of this conference.  Day 4!

Thursday, June 11, 2015

Atlanta, 2015

It's been a long time since I've been in Atlanta.  Probably more importantly, I'm in Atlanta experiencing the Society for Disability Studies this year, an impressive organization and conference.  And even more important than me attending this conference is the fact that the SDS was the last conference I attended in 2014-2015.  Right after last year's conference, my brilliant Duke oncologist discovered I had a brain tumor was growing, and my life kicked into gear in another way in summer 2014.

A series of things happened in summer of 2014.  I worked with colleagues and friends:

  • They helped me put together the material for me moving toward my professor in Women's and Gender Studies. (It worked!  Hurray for heart-friends-heart for making me become Professor Alison Piepmeier!)
  • They helped me to create a semester of WGS that I couldn't even participate in until the very, very end of the semester.
  • They were kind and generous when they interviewed me for various things, from my article about myself in the City Paper to my interviews with the lovely English Department at the College of Charleston.

I feel certain that there are important things to have left on that list.  I know that I've said this before, but it's worth saying again.

And here I am, June 2015, hanging out in a beautiful, quiet, unnecessary hotel room, wondering what this really means, what this really is.  I was gone last week interviewing Emily Perl Kingsley at her own home--invited to stay at her very own home!  But of course that was different.  This hotel room is…calm.  Alone.  Thoughtful.  Able to stay away for virtually everything.

Latte.  Caffeine and deliciousness.  Good morning!
What does this mean?  Last year Rosemarie, one of the women whose scholarship I adore, talked all the way from the hotel to the airport.  We talked about seizures, about how able I am to embrace Down syndrome but am so…torn? shameful?…when it comes to my own seizures.  I was hiding it.  I wasn't talking about it.  Rosemarie suggested we think about the ways in which our own hidden fears can emerge.  

I'm thinking about that as I attend this conference.  I'm thinking that I'm open to the fact that I have a brain tumor, that I recently had very serious surgery, that I'm taking serious chemo, and that I'm in a world of  seizure meds (all working very, very well, so hurray for that).  This year I'm considering writing an article about what it means to be a person that has a world of challenges.  I'm facing it with my daughter (rest assured, she's surrounded by 20 people who are seriously ready to be on call 24 hours a day).  

I arrived here yesterday afternoon.  I had some ideal food in downtown.

He was generous and let me take his picture.

Beautiful hot dog.  I asked him to do it
his way, so he covered it with special slaw
and some sort of Asian ketchup. That thing
was gooooood.

Hello, Society for Disability Studies.  Hello, travel, thinking new ways.  Hello, possible ways of writing multiple things, with the focus on my book (I love it--I want to write it--I love it).

Let's see what happens.

Friday, June 5, 2015

Ralph's got a little award

Best donut ever.  I mean, ever.
Our holiday routine.
Joel, Christy, and I love us some Ralph's time.  I tend to eat until I feel a little sick.