A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Thursday, December 25, 2014

Slow Time

Sunday night, we went to hear Cute Cousin Michael (CCM) sing in the Seattle Men's Chorus: their holiday concert was "Our Gay Apparel." The concerts have good choral music with campy humor, always some skit with men in drag and another with men wearing tights that don't hide any bumps. At Christmas, there's the ugly Christmas sweater song, and some of the guys display doozies. It's a feel good concert, and we always feel especially good to see CCM having fun, participating in this communal event. 

The choir sang a mix of old Christmas carols like "God Rest Ye Merry Gentlemen" and newer songs, like the one this choir and others commissioned: "New Year's Carol"  with music by Ola Gjeilo and lyrics by Charles Anthony Silvestri. The line “Soon will the frost-bite give way to the flower. Under the snow waits the promise of May especially resonated with me. I find myself appreciating winter's hibernation more this year than in others, though this year I'm not focusing so much on the spring that will come as I am on the gifts of the dark season.  

The flu has slowed me down this holiday season, even more than my brain tumors and their treatments have slowed me down for the rest of my life. Though I wouldn't have chosen to have the flu or the tumors, there's a gift to this slowing, a chance to experience a moment rather than race through it, time to ponder and appreciate. Time to meditate. Time to sleep. 

I love a good sleep: burrowing in the down comforter, drifting into the dream world, my body and mind healing as I rest. I like the warmth of this cocoon. I like lying on my stomach and stretching my long body so that my toes fold over the end of the mattress. I like the fact that the world continues to turn while I lie there. 
The night's dark can seem scary: ghosts haunting those strange warm spots as I walk in the night's cool air, the strange growls of nocturnal animals in the bushes and the spookiness of shadows around the corner. But night's dark can feel comforting, too: the world's reminder that rest is part of my calling just as the work of day is. 

I'm generally drawn to summer's warmth more than winter's cold, but this year I find myself staying in the season's dark rather than yearning for summer. Though Keats's ode "To Autumn" is about the fall, it's at its essence about being in the moments of quiet and loss, so this winter I find myself quoting from him: 

Where are the songs of Spring? Ay, where are they?
Think not of them, thou hast thy music too,--

I connect, too, with Mary Oliver among the trees that say to her:

"You too have come
into the world to do this, to go easy, to be filled
with light, and to shine."

Our friends Rita and Linda invited us to a winter solstice party with another poem that calls me to rest in winter's cloak. Kaaren Whitney closes with this lovely reminder: 

Beyond the entrance we call ‘Winter’
lies a quiet space, empty
but for a single candle
whose light increases
as dreams and hopes
fuel its incandescence.

Step softly within
where the calm communion
of sitting with silence,
shining with light
brings long sought oneness.

Since my brain tumors I have been learning about winter's quiet, soft spaces. I learn especially from my friend Lori who teaches me to listen in the silence. I have not been able to see Lori as much as I like to this fall because I have gotten myself too busy and because the long trip to her home requires that I leave space that I have not been leaving. I need to get back to her.

Lori was diagnosed with cerebral palsy as an infant, and the degenerative disease now makes it impossible for her to have muscle control, so she uses a wheelchair.  She also cannot speak, so when my friend Pea and I visit, we ask her binary questions ("Is it an elephant?" gesturing with the right hand, "or a petunia?" gesturing with the left hand. She moves her eyeballs right if it's an elephant, left if it's a petunia, and up if it's neither. I'm not sure what it means when she moves them back and forth: either it's both an elephant and a petunia or she's giving us a hard time.)
These conversations are slow. This past summer when we visited, we formed a little triangle in Lori's room, and she decided among many choices that she'd like to tell us about herself as an artist. Two of her paintings hung on the wall (She paints holding the paintbrush in her mouth), and through a long series of binary questions she told us that the darker of the two is about a time when she was in elementary school and a boy made fun of her for her disabilities. The other painting, with more yellows, greens and blues, is about the hope she feels when she's in nature. 
Since my brain tumors and their disabilities, I move slowly, and I have been thinking about moving slowly lately, about the ways that it has changed not only the ways that I move in the world but also the ways that I see and live in the world. 
Sometimes, it's frustrating to move so slowly. When the bus that I hoped to catch whooshes by and I'm still at the curb, I wish I could run, but instead I will wait in the cold and the rain for the next bus. When I'm crossing the street and the white man changes to a red hand while I'm still in the middle of the cross walk, I look anxiously to my right and left and wish I could move more quickly. 
Mostly, however, moving slowly is a blessing. Before my tumors, I would dash from place to place trying to get as many activities into a day as possible. I was unlikely to stop to say hello if you were walking by. I was unlikely to notice the particular curve of a cherry bud. I was unlikely to notice the gift of my breath.

This fall I took a meditation class called "Mindfulness Based Stress Reduction," a class for people with serious health issues, and I've been practicing each day. This is a different kind of practice than soccer, volleyball and basketball practices when I was growing up. It's a practice in not doing anything, in allowing my mind to rest. It's hard. 

Yesterday for the first time, my mind was actually still for a few moments, not busying itself with memories or imaginings, not making plans or narrating my experiences. For a few moments, it just was. And then I noticed that I wasn't thinking, and the words started again. So my mind ran about like a squirrel again, but for those moments it had been still. I had been resting in a way I never have before. 

Previous Christmases (is that the plural of Christmas?), I have identified with the wise men in the Jesus birth story. I have imagined myself like these men, taking a long journey guided by a star that seems clear to me in its direction though I do not know its destination. I have imagined myself seeing this baby, this miracle, and then taking another long journey home, a journey where I mull over the meanings of the star and the child, a journey where my mind works hard to understand what I have experienced.

This Christmas, I'm identifying with the cow in the stable. This miracle just showed up in my home and my only job is to witness. I will not tell the story. I will not be thinking about the ways this birth will change the world. I will just be.


Thursday, December 18, 2014

'Tis the Season

…to have the flu. Fa-la-la la-la la la. This one's been a doozy. Granted, I suppose it's not as bad as when I was having radiation and also had pneumonia, the swine flu, and food allergies. 

This one's just been a regular person's flu, unaccompanied by other traumas. Still, Ann says that I was a better patient after brain surgery than I am with the flu. That makes sense. Brain surgery was a least somewhat novel and interesting. Sore throat, fever, chills, headache, laryngitis--they're all so dull. AND unpleasant.

I was trying to tell my friend Karen why I saw brain tumors as an interesting adventure whereas the flu just seemed like an inconvenience. She said, "That's interesting" in that way that means, "That doesn't make any sense." She was right, and as I attempted to explain it, I realized it was illogical. But there it is, nonetheless: I have a very different attitude towards the flu than towards brain tumors: brain tumors were interesting; the flu is tedious. 

Last Tuesday, when symptoms were just beginning, I emailed my Practicum Instructor (essentially my boss) to say I wouldn't be in on Wednesday because there are so many pregnant women in the office (including my practicum instructor), and I didn't want to take the chance of making one of them sick.

My practicum instructor responded via email, "It would probably be healthier for you not to come in as well." Funny, I hadn't thought of that. I've never thought of my own health when deciding whether or not to go to work or to school. I've always thought I could push through.

I remember once in my first year of teaching high school when I had the flu and laryngitis (like I do now), and I taught my classes. Since I couldn't speak, I would write what I needed to say on the white board.

This was stupid. I could even see that at the time. Perhaps with a few years (I'm fifty now), and a couple of brain tumors, I should have a clearer awareness of my own health and more humility about the importance of me being places. The world, I should have learned, can go on without me. It nearly did with my brain tumors, and one day it will for sure. 

However, I have not learned this simple lesson. I still see my presence as important, whatever my health may be. There is some healthiness to this attitude, I think: a belief that I am fully alive and needed even if I do have disabilities. But there's a fine line between asserting my aliveness and being humble, recognizing my humanity. I haven't found that line yet. 

A week into the flu, I went to a nearby town for some tests that I need to take in order to challenge my bad insurance company, which is denying my ongoing disability claim just to be a pain (and not, it seems to me, because they might really believe that I can work for 80% of my previous salary.) When Ann and I went into the doctor's office, I introduced myself in a whisper and the doctor looked kerfuffled. Ann told him, "She's had the flu for a week." (At this, the doctor took a step back). Ann continued, "She hasn't had a fever since Thursday and isn't contagious" (At this, the doctor did not step forward), "but she's lost her voice and can only speak in a whisper."

The doctor looked from Ann to me. I whispered, "That's right," and he looked at Ann again.

"Who are you?" he asked.

Ann introduced herself and the doctor sent us happily home, with a plan to meet again in a couple of weeks. This doctor  specializes in neuropsychological testing (whatever that is). He doesn't do the flu.

I'm tired of doing the flu, too. 

Monday, December 8, 2014

Spirit Animals

A friend recently told me that on a walk in the woods near her home, a wolf appeared from the wild to look at her. The wolf was huge, considerably larger than her labrador retriever. I had to swallow my jealousy for a moment--that she would get to walk for miles in the woods and to see such a marvel. 

Walking in the wild is the thing I miss most with my disabilities. Though before brain surgery, I often went into the wild and Ann and I once took a hike in Denali National Park in an area where wolves had been cited, I never got to see a wolf. I'm saving that for my next lifetime. (That's when I'll have a lovely singing voice, too. Maybe I'll be a bird.)

At the end our talk, my friend called herself, somewhat wistfully, a "lone wolf." I keep thinking about that wolf and her description. Perhaps she saw something of herself in that graceful, quiet, lonesome--or is it independent?--wolf.

A few years ago, when my dear friend Chris (RIP) and I wrote with a writing group in my church's basement, we responded to the prompt, "If you were an animal, what animal would you be?" 

I remember Chris writing that she would either be a basset hound or an elephant. When she read aloud, "For one thing, basset hounds and elephants are good friends," she laughed with her deep giggle. "I have no idea if that's true, of course," she said. "I just made that up." I loved Chris's laughter, and I loved her idea that these two reflections of her nature were friends--perhaps a signal of an internal peace that she didn't often experience.

In that writing session, I wrote about three animals: 

First, a cat, who lets people pet it when it feels like it and ignores them when it doesn't. Cats roam independently wherever they want--something I can no longer do with my feet because of my disabilities, but I can still do in my spirit. Cats nap in the sun, oblivious to the noise and even crowds around them. I do that, too.

Second, I wrote about being a dolphin that plays in the waves, trying to make the sharks laugh. Yes, I'm like that.

Third, I wrote about being a turtle: born old, moving slowly across the land, and pulling into my shell when I feel threatened. That's me to a T.

Then I remembered a psychology game from a long-ago friend who was in medical school and became a psychiatrist: Describe yourself as an animal three times. The first is how you see yourself. The second is how others see you. The third is how you really are. 

Yep, that works for me: I see myself as a cat; you see me as a dolphin; I am really a turtle. This makes sense to me and teaches me about myself, an unending process of learning more about the person I am, a process of unfolding. 

I wonder, too, about skin and bone animals, not just spirit animals. In my recent trip to visit my siblings and their families, I spent a lot of time with Maisy in my lap. Maisy is  little dog with small bones, a lot of curly fur, a puppy's spirit of jumping about, a crazy soft pink tongue that simply cannot stay in her mouth, and an old face framed by puppy fur. I loved her sweetness.

I've been thinking about that sweetness since my partner Ann and I returned home. We don't have pets of our own, but love it when a neighbor's pet adopts us each summer. 

Thinking about such spirits, I went to Mary Oliver's poem "Dogs," and love these lines:

look look
into their eyes

bright as planets
under the long lashes

here is such happiness when you speak their names!
here is such unforced love!

here is such shyness such courage!
here is the shining rudimentary soul

here is hope retching, the world as it is….

We have such a deep connection to animals and their spirits. It's no wonder we see ourselves in them. It seems like the general paradigm is that humans are more advanced than other animals because we have a more complicated brain, but perhaps they are closer to their own natures, closer to God, for not having such complications.

I recently took a Meditation Based Stress Reduction class with 15 other people with serious health conditions. Much of what we tried to learn--and I try to practice each day--is to sit with the world as it is rather than battling the world in our imaginations, to be present in the moment rather than dwelling in the past or the future. In this class, we sought to teach our minds to be still. Perhaps we were trying to learn to quiet that part of our brains that makes us "more advanced" than other animals. Perhaps we were trying to become more dog-like. 

Perhaps animals' lives are meditations on the joy of being present: Maisy, like so many dogs, present in connection; elephants and basset hounds absolutely in the moment in their droopy gentleness; wolves a reflection of the grandness of the world, its mystery and its quiet grandeur. 

Let me learn about peace and stillness and joy, about being in the moment. 

This morning, a Sunday before church, this is my prayer. 

Tuesday, December 2, 2014

A Trooper

The Sunday after Thanksgiving, Ann and I went into New York City to see the musical The Book of Mormon. Afterwards, we searched the Times Square area for our favorite bar: The Marriott Marquis’ large-windowed eighth floor bar. We didn’t know the name of the hotel that offers us views of flashing 20 story illuminated ads and people like a scatter of ants on the streets below, but in the past we’ve always just stumbled on it, and laughed, “Here’s our favorite bar!” Sunday, however, we walked up and down crowded Seventh Avenue before a bored man holding a sign noticed that we looked lost, asked us what we were looking for, and told us where to go. We had walked past bar’s lobby but hadn’t recognized it because its lower floors are being remodeled.
As we walked up and down the long blocks, me holding Ann’s arm with one hand and my cane in the other, I struggled over uneven sidewalks and crosswalks. Similarly lost tourists and impatient locals bumped me without noticing how hard I was working. Eventually, guided by the bored stranger’s directions, we found our spot and had West Side Cosmopolitans, a Caesar salad, and quesadillas while ads blinked a kaleidoscope of colors outside the window.
Afterwards, we re-entered the crowded streets and made our way to the subway station and to our hotel for the evening. As we walked, my arm in Ann’s and my head down, navigating the cracks, I said to Ann, “I am a trooper.” I have been a trooper since these brain tumors and my disabilities—in fact, I was a trooper even before my disabilities—but I’ve never recognized it before. This identity as a trooper is new to me. I have so many identities that are new to me.
I am now a disabled woman, a survivor, and a social work student.  I am no longer an athlete, a hiker, a driver, or a teacher. I am still an adventurer, a yogi, a lesbian, a deep sleeper, and (I now see) a trooper.
In my years redefining my life after brain tumors, I have discovered in myself new selves. This quarter, my research class at the University of Washington’s School of Social Work has inspired in me yet another new identity. Before this class, I had thought of myself as moving from being an educator to a social worker, and I had decided to become a practitioner rather than a researcher. However, in this research class I read about the merging roles of practitioner and researcher, and I’m noticing my past and present identities begin to merge in me. I am beginning to identify as both practitioner and researcher, both educator and social worker.
I came to the University of Washington’s School of Social Work (UW SSW) from my previous career in secondary education. I left that first career because of disabilities derived from brain tumors, neurosurgery, and radiation to my brain. Though I had to leave that career, my education career continues to inform my identity and my beliefs about work for social justice, the cornerstone of both fields.
When I left my career in secondary education in order to become a therapist for people with life-changing health conditions, friends suggested that I not get a degree but simply hang out a shingle. Being a therapist didn’t legally require any specific education, and going right into the work seemed reasonable to them. After all, I had personal experience with life-changing disease; experiences as a teacher, instructional coach and curriculum development leader that could guide my therapeutic work as a new kind of teacher; experience as a consultant with a national education reform organization that would parallel this new work for social justice; an advanced degree in education as well as several certificates that would lend me legitimacy; and 27 years in high school education, where I had sometimes felt more like a therapist (for my students, their parents, and colleagues) than like one who taught the subject of literature and reading and writing skills.
However, I did not take my friends’ advice because I thought it important to be educated about peoples’ experiences and available therapies. I believed in the importance of research-informed practice from the beginning, and I had assumed that I would read expert analysis from research professionals and apply the research to my work.
I am glad I decided to go to graduate school. I think differently now about my upcoming work than I did when I started. One difference is in the way I think about research-informed practice. Though I often used action research as a teacher, critical action research is new to me.
As an educator, a change agent who worked for social justice in schools, action research informed much of my work. When there was some challenge in, say, expanding the cultural perspectives that my curriculum taught or reducing my students’—and my own—stresses, I researched new curriculum and new school schedules to inform actions my colleagues and I might implement.
At that time, however, I did not know about critical action research, which would have strengthened my work for justice. Had I known, I would have encouraged students and their families to lead research with my support rather than my always leading research with their support. Students and their families could have defined the agenda rather than me defining it.
My current work to increase disability content in the University of Washington’s School of Social Work involves this critical action research. The project goes beyond being “community-derived” and is, as researchers DePoy, Hartman and Haslett describe, “community-initiated” (1999). This work’s foundation is in trusting and collaborative relationships.
My work at the UW SSW builds on critical action research’s strengths, but I have only recognized this since being in this class. Previously, I sometimes suspected the Associate Dean and Program Director of encouraging me to do research that they should be doing, but now I suspect that they recognized the strengths of research that is “community-initiated.” I have legitimacy and passion in this work because I am in the oppressed community for which I’m advocating. With more understanding now, I have more trust. I believe that with this increased trust, we will work together more collaboratively and more successfully.
My identity as researcher and clinician, a social worker who is also an educator, begins to tie together my past and present lives. Now, instead of feeling like a puzzle’s many parts, I am beginning to feel like the puzzle whose picture is emerging as the pieces fall, slowly, into place.