Monday, July 20, 2015


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.  


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


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.