Small Moments

When I'm posting about Ma, I always feel like I have to have a piece that has a clear beginning, middle and end. Not as much as the essays or stories I write, given that  I have agonized over every line and word again and again; I've always used this forum to free myself of those perfectionist constraints. In reading from few different sources lately, I've been struck by the power of illuminating the smallest of moments in life and am going to try and post a bit more in that spirit.  One source is the blog of a writer who is a friend of a friend, Emily Rapp, who recently had a baby diagnosed with Tay-Sach's disease, a condition that basically tears down a baby's brain and nervous system until there nothing is left. This, it goes without saying, I cannot imagine, despite watching it happen in some form with Ma.  Emily started a blog, http://ourlittleseal.wordpress and has vowed not to edit herself or spend time rewriting, but simply to post what she's feeling and experiencing in the most raw and direct way possible, and in order to keep her mind from going to those places where her son begins to lose function, she tries to keep every post focused on the day she's writing it, her best attempt at staying present. She has only been posting for a month or so, but I'm always struck by her words and the immensity of what lies ahead for her and her family.  She also wrote an amazing memoir about being born with a defect that required the amputation of most of her leg as a young girl, called Poster Child.

Reading Emily's thoughts has inspired me, along with a quirky book of vignettes by Bailey White, called Mama Makes Up Her Mind: And Other Dangers of Southern Living. An equally quirky woman gave it to me a month or so ago, and told me I needed to read it to Ma.  Every week since then, she asks me if I have.  "No," I've said.  "But I will." In part I haven't because we are still wading through Freedom, and I feel guilty enough for not reading to her enough out of that, despite many long tedious passages and our mutual agreement that we don't actually care what happens to anyone in the book -- we just want to finish the damn thing. (Spoiler alert: we got so impatient yesterday with it all, that I skimmed the last 100 or so pages and gave her the highlights. Sorry, Franzen, but you wore us thin with all the endless myriad details!) There is also the fact that we get distracted during the day, as there are visitors and hospice visits and meals to make and laundry to do, and then Ma needs more tea. This happens about every 20 minutes, in the middle of whatever's going on: Ma needs more tea.  But I'd read a few of the stories on my own, and liked them - they are usually about two pages long, but it's incredible what the writer does in two pages. (And perhaps it's also her living situation that's close to my heart - she's a self-proclaimed 30-something spinster who lives with her eccentric mother.) Saturday morning was a hard one for Ma, for various reasons, so I started reading to her about Bailey and her mother, and these precise, beautifully weird stories changed everything, at least for a few hours.  Let's just say they live in a house in Georgia with a vintage Porsche and a bathtub are both installed on the front porch and her mother's favorite movie is Midnight Cowboy. I almost cried when I told my quirky friend how the book had made it so much easier to survive that shitty morning. 

So, in the spirit of all of the above, of trying to live in the moments that we have right in front of us, good, bad, painful, etc. here are few random slices of our lives from the past year and a half, some recent, some old - all that I've not known exactly what to do with until now.

Ma is horizontal on the hospital bed that's been installed in our house since her grand mal seizure in October 2009.  I have to reach across her to get to the button that will raise her up to sitting, so I say, "Ma, do you want to push the button?"
She lifts her head up off the pillow to look at me. "Why does everyone ask me that, 'Bobbie, do you want to push the button? No, I don't want to push the fucking button," she says, as she pushes the button. As she rises slowly, the mechanical squeak of the bed following her progress, she says, laughing, "Is it because it's the only thing I can do at this point? Push this motherfucking button?"

A year ago November, I moved in with my parents to help with my mom. In the previous six months, my mother had been diagnosed with a terminal brain tumor, my beloved pug died suddenly and I had given up my apartment, my freedom and my privacy. However, for the first time in almost eight years, I had a boyfriend.  A very handsome, smart, lovely boyfriend. After the weekend I moved in, after he'd spent his previous visit helping me schlep nearly everything I own to a storage unit, I called him. He had a been gone a day or two, was back in Northern California where he lives.  This is what I said:

"Now what do I?"  I really didn't know. I felt entirely lost.
"You hang out with you Mom.  You love her. That's the only thing you need to worry about right now."
"Oh," I said, thinking to myself, but I'm in a relationship, I need to work out, I need to write, I need to produce things, I need to be productive, I need to show the world that I'm doing something.
"There are only two rules for getting through something like this: Don't lose your shit and have no regrets."
"That's it?" I said.
"That's it," he said.

I make the mistake of telling a girl I work with about what's happening with Ma. I would never expect her to understand, as she runs her own business as a telemarketer for hire. Anyone who could enjoy cold calling, my personal definition of hell, and like it enough to create an entire business around it is not going to know what to say when I tell her my mother is dying.  But, I am trapped this particular Saturday night and a few glasses of wine in at the bar next door to our work, and L. stopped in, sat at my table. I knew no one else, and there was nowhere to go.  When she asks what is going on in my life, out it comes. Her face doesn't change expression when I tell her, although there is a strange smile that creeps across it when she tells me some girl she didn't know very well in some event group she used to go to had a sister who died of brain cancer. "Hard stuff," she says.  I sip my wine.
"You know," she continues, "I am really worried about my fish, Fluffy." I don't know L. well, but I know her well enough to understand that she has no sense of irony and that she is being entirely genuine and serious. I nod.  "I mean the other day I went into the living room and well, he wasn't swimming like this," she says, and flutters her long white hand to indicate a horizontal position.  "He was swimming like this."  Her hand then flutters vertically.
"Huh," I say.
"I mean, I've had that fish for five years," she says, taking a short sip of wine. "I'm pretty attached to him."

Ma is waiting for the State of the Union address to come on TV, and she wants to watch it downstairs while she eats her dinner. This means Jim, my stepdad, has to bring the TV down, since I am making dinner. Ma likes to watch me cook, so she sits in the kitchen for a few minutes and watches, then cranes her neck towards the living room, where Jim is sitting on the couch, not getting the TV. In his defense, it doesn't start for almost 40 minutes.
"What's he doing?" she says.  I shrug. She rolls her eyes, and scoots herself over to where he can see her. "Um, Jim?" she says.
"I'll get it," he says, and continues to sit on the couch.
 She rolls back over to me and taps her good hand on her good leg. "Marriage," she says.
"It doesn't start for like 40 minutes," I tell her.
"Oh," she says, and is quiet for a moment. Then she leans forward and whispers, "I don't understand why he just won't go get it."
I shrug again. "Just think of all the karma you are burning by waiting so patiently."
"Bullshit," she says.  She taps and taps and half-watches me.  Then she starts laughing. "Doesn't anyone understand how much I'm suffering?!? I mean, I am really suffering here!"
We are still laughing when Jim bring the TV downstairs 37 minutes later. I tell Ma she's going to have to suffer a little louder from now on if she wants everyone to hear.