Wednesday, March 30, 2016
1) Is the front door locked?
2) What time do I have to get up in the morning?
3) How much sleep will I get?
4) Should I go to the bathroom now or will I just fall asleep and get up when I need to?
5) Did I take my bedtime supplements?
6) What time can I take my take my thyroid supplement?
7) Will the supplements give me enough energy to make it to my nap tomorrow?
8) When will I take my nap tomorrow?
What about you?
Wednesday, March 23, 2016
Before brain surgery, I filled the nooks and crannies of my days with too many post-it note reminders. I rushed from car to classroom and ran to the restroom in any spare moment. I arose at four a.m. to be at the gym by five to swim and lift weights and rush through my sun salutation before my workday began.
My physical spaces were as cluttered as my time. I was surrounded by stacks of ungraded papers, revised and re-revised lesson plans, and unpaid bills. A couple of times at school, I tripped and fell with stacks of papers in my arms as I was racing across campus to a Xerox machine. Because our “hallways” were outdoors, the papers fluttered in the rain until I jumped up, grabbed them and ran on.
Since brain surgery, I’ve slowed down. I must. If I try to dash around like I did before, my head will hurt, and I will fall. This new way of living has been a gift. Though I'm dealing with significant physical and mental challenges, I've been more centered and spacious than I was before. This spaciousness in world and time has been a gift.
However, in this sixth year after my second brain tumor and radiation, I have forgotten this gift from my brain tumors. I have again been overcommitting to too many projects and fighting through the resultant fatigue. There’s just so much I want to do, so much I take joy in.
During this two week break from classes, I wanted to get so much done. I know that I struggle with fatigue, and I thought that if I got a head start on my next quarter I would maintain an equilibrium. I thought I would clean off my desk and the study floor, draft an essay due in May for my writing class, go to the gym three times a week and to church on Sundays, write two blog entries, read a book and some articles for my poetry work with people with memory loss, spend relaxing time with Ann and friends (time that I put off during winter quarter), work on the goal to include disability justice as a core part of the UW SSW curriculum, make plans for the upcoming Methodist General Conference (an international conference held in Portland this spring), work on a paper for a disability conference…and the list goes on.
I have done very little of that, and my precious two weeks are coming to a close. As the pile of paper cluttering my desk grows the size of an Amazonian anthill, I just want to lie in front of the fire, watch the women’s NCAA basketball tournament, and hold Ann’s hand.
It’s time for me to learn again my brain tumor lesson, which Thomas Merton articulated:
There is a pervasive form of contemporary violence, and that is activism and overwork. The rush and pressure of modern life are a form, perhaps the most common form, of this innate violence.
To allow oneself to be carried away by a multitude of conflicting concerns, to surrender to too many demands, to commit oneself to too many projects, to want to help everyone and everything is to succumb to violence.
The frenzy of our activism neutralizes our work for peace. It destroys our own inner capacity for peace, because it kills the root of the inner wisdom which makes work fruitful.
Like Annie Dillard in An American Childhood, I am learning the same lesson over and over.
Instead of working on my pile this morning, I’m writing this blog entry to figure my way forward. (Though I have written this blog for others since radiation, the writing has first been for me as I figure out how to live a meaningful life after brain tumors. The answer is not: do as much stuff as possible.)
It’s time to simplify, to unclutter my desk, my calendar, and my mind. How do I do that? This quarter: fulfill obligations I’ve already taken on and do not commit to new ones: that time will come, but it’s not now.
Now is the time to chillax (a term my hip niece Gretchen taught me.)
I’ll let you know how it goes.
Tuesday, March 8, 2016
Monday afternoon, I was irritated to hear Ann's voice calling up from downstairs. I was taking my nap, and I heard her holler, "Are you up for bean bag jumping?" I figured she was on the phone with our friend Pam and we'd be bean bag jumping with Pam and Allyson's kids, so I mustered all the cheerfulness I could from my deep sleep and hollered back, "Sure!"
As I woke further, I wondered if Ann had in fact hollered up. That's just not like her. I called her name, but she didn't respond, and I lay there longer trying to figure out what had occurred. Then I thought, "What in heaven's name is bean bag jumping, and how could I do that with my disabilities?"
Since radiation for my second brain tumor, I have sometimes confused waking and sleeping, and I decided to investigate further, so I called Ann's cell phone.
"Hey, Sweet Thing!"
"Hi, My Love. Did you just holler up to me about bean bag jumping."
"No. What is bean bag jumping?"
"No idea, but I don't want to do it, and I'm glad you didn't wake me up. I must have been dreaming."
"Maybe so. For the last five minutes, you've been talking in that high pitched voice that you use when you're talking in your sleep."
I do a lot of talking to myself since my brain tumors. For example, when I'm first waking up in the morning, I lift my head inches from the pillow and say, "Up, up, up." I sound like a child watching a red balloon disappear into the sky's blue as I encourage myself to get up. At the end, I usually lay my head back down on the pillow and groan.
After a few minutes of moaning and groaning while I stretch my limbs, I sing to myself "Waking Up is Hard to Do," a bastardization of the Grease song, "Breaking Up is Hard to Do." Then I encourage myself with the idea that I'll soon get to sleep again by reciting the first part of Theodore Roethke's "I Wake to Sleep and Take My Waking Slow." As always, I get stuck on the line about the lowly worm climbing up the winding stair, and I go to a new song, this time Tom Petty: "It's time to move on. Time to get goin'. What lies ahead there is no way of knowin'"
Finally, thirty minutes later, I rise as I recite the last lines of Maya Angelou's "Still I Rise." The lines are not hard to remember: "I rise. I rise. I rise."
I encourage myself throughout the day. "You can do it, " I say, as I traverse a broken sidewalk. "Whew. Made it," I say when I sit on the bus. "Five pages down. Two to go," I say as I come towards the end of a social work paper I'm writing.
I have always talked to myself, keeping my words inside my head when others were around. Before my tumors, however, I generally asked questions: "Why are you having so much trouble with this?" and "Why am I always so tired?" and "Can my life be meaningful, or will I just leave footprints on this globe before I go?"
Perhaps my more encouraging self-talk is another gift from my tumors. Before these tumors, I expected myself to make big differences in the educational lives of my students and the other underserved students in U.S. schools. Now, I’ve lowered my expectations of myself as I’ve begun to see myself as part of a bigger picture where I am not at the center.
I still ask myself big questions. Once I've arisen, I quote throughout the day from Mary Oliver's poem "The Summer Day":
Tell me, what is it you plan to do
with your one wild and precious life?
I do believe this one life of mine, disabilities and all, is still wild and precious. I still want to leave more than footprints on this earth.
But perhaps I’m more humble now about what I might leave. Perhaps I’ve learned from the poet Walt Whitman, too:
Oh me! Oh life! of the questions of these recurring,
Of the endless trains of the faithless, of cities fill’d with the foolish,
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew’d,
Of the poor results of all, of the plodding and sordid crowds I see around me,
Of the empty and useless years of the rest, with the rest me intertwined,
The question, O me! so sad, recurring—What good amid these, O me, O life?
That you are here—that life exists and identity,
That the powerful play goes on, and you may contribute a verse.
Perhaps I have let go of the need to write (right?) creation’s song, and see now that I will contribute a verse and see the gift in that. I am part of something much bigger than myself. It would seem that this should have been obvious before, but it has not been.
Perhaps in addition—or as part of—not fearing my own insignificance, I see life and death differently now, as part of a whole and not as two universes.
And perhaps I learn from my brain tumor flirtations with mortality as from Whitman:
All goes onward and outward, nothing collapses,
And to die is different from what any one supposed, and
Perhaps. And perhaps this is my Easter message as I look through Lenten eyes. Or perhaps this is all baloney.