Saturday, September 20, 2014

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:

Tuesday, September 9, 2014


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.