Rise and Shine

Tuesday night I met with two women from last year’s memoir class. We shared reading and resources for writing. We also spent twenty minutes writing on a prompt of our choice from The Moth in Seattle. (The Moth is a radio program out of New York but also has venues across the country where storytellers gather to share stories on a theme.)

I chose the theme “Rise and Shine” because the exhortation, pretending to be cheerful but really just the words of an early-riser bossing around a late-sleeper, makes me vibrate like a dentist’s drill: not painful in my teeth but painful in soul.

The words remind me of my Grandmother Edwards, whom I loved at all times except first thing in the morning. When she stayed with us kids and tried to rustle me out of bed for school, she would sing, “Rise and Shine” in a falsetto, and when I simply groaned but didn’t stir, she would lift the bottom of the comforter and pull my toes: not torture, I recognize, but not endearing, either.

Megan, Sarah and I wrote for 20 minutes, each on a different prompt. I was on my computer and copied some material from previous writing and then continued. Afterwards, we read our pieces aloud to one another. We did not criticize one another’s work. We merely said what we liked. Here’s mine:

When my partner Ann wakes me from my deep fog of sleep, I struggle to remember who she is and who I am, and labor to pull myself from sleep’s dark pull. My first line is from Roethke's great poem, “I wake to sleep and take my waking slow.” Then, I wail a countrified bastardization of the Grease classic: “Waking up is hard to do.” Ten minutes later, I rise to my elbows, and I sing a line from The Muppet Movie: “Movin’ Right Along.”

I also sing Tom Petty’s “Time to move on. Time to get goin’. What lies ahead there is no way of knowin’.” (If you think there’s no way I could sing all of this in the morning, check your assumptions. It takes me a good half hour to rise: in the first ten minutes I rise to my elbows, and then I take the next twenty minutes to put my feet on the floor.) The poetry, part of my daily routine, is my favorite part of the morning.

When I finally rise, my lines are from Maya Angelou’s poem, “And still I rise.”

Once I stand, my legs are still wobbly with the shock of the morning, but I try to adopt a go-get-‘em attitude. I say to my legs, “Inaheed” or “Vamanos.” My legs speak both Amharic and Spanish, so they know this means, “Let’s go.”

(Poets must struggle with waking up, too, since John Donne in his poem “The Sun Rising” calls the sun a “saucy, pedantic wretch.” That’s my favorite poetic insult. I like it even better than Falstaff’s “you bull’s pizzle.”)

In this routine, I remember my days of such fatigue and depression when I worked to lift my body and spirit to face the dark winter and this dark time in my soul, but I slipped into an emotional fog nonetheless. I made it through each day, and I think only Ann saw my struggle, but at night I was so weary that I could not sleep. One sleepless night, I wrote a letter to God, an almost desperate prayer:

Are you there, God? It’s me, Mary. I feel bone-weary and soul-sad. Where does this depression come from?  If this sadness could talk, I can imagine what it might say, “I’m here because I’m always here, and I’m as old as time. I rock like an old woman endlessly knitting in her chair. Whatever you do or feel, I rock on. I am the pain of human suffering, caused by human cruelty or the whims of weather and tide. I am part of what it means to be.” I hear the sadness, God, but I don’t hear you. Where are you?

I read in le thi diem thuy’s novel The Gangster We Are All Looking For a poetic passage describing a dying school of fish. I wondered if my sadness were like that school of fish just before it dies on shore—darting in the darkness, luminous in the shallow water with the moonlight creating a mesmerizing, melancholy beauty.

I felt the fish shifting in the sea of myself, knocking my ribs, tightening my throat, bumping and turning in a synchronous bounce from my stomach lining. I wondered if they would ever rest.

I wondered what must die in me, what would turn its white belly to the moonlight from the sandy shore.

In these difficult days, I talked to God, but I didn’t hear a response. I grew heavier and heavier, and I wondered if shining must be part of rising. Maya Angelou sounds so heroic in her poem: she is the hope and the dream of the slave. I was just tired.  Ooff. Air out of a tire tired. Body as a sack. Head like the clapper in a bell. Chest thud. Tired.

One of the delightful surprises since my brain tumors is that, though the fatigue has deepened, the depression has not returned, and I am learning to make peace with my sluggish self.

I wonder if people who rise and shine go on in spite of this fatigue, or if they (and I) are a different breed. Maybe I’m not of the shining sort. Maybe I’m just a moaner.

I also wonder how others perceive me: do you see this exhausted person, or do you also see me as a lively spirit, as a survivor in spite of hard times.

Do you think I’m like Maya? Did Maya experience this fatigue, too? I remember that after she was raped as a child, she didn’t speak for seven years. Seven years of silence. Likewise, Elie Wiesel after he was released from the concentration camp Auschwitz at the end of World War Two, an experience his father didn’t survive: was silent for ten years, during which he wrote a biography of over 900 words. It’s title (in Yiddish): And the World Remained Silent.

Do I need this time of silence? Though I had brain surgery, where surgeons saved my life, rather than suffering the cruelties of Nazi Germany, perhaps I too need to give myself time. I need not Rise and Shine. I need to take my waking slow.

Though I often know where my writing will begin and have ideas of stories and details I will include, I never know where a piece will end. In this piece, as so often happens, I discover new ways of being and thinking as I write. In this case, I come to a kind of peace with my fatigue and my slowness.

Writing with and for others helps me learn and heal.

Thanks for this.

Healing

I am sitting on Cheli and Taylor’s couch in Medford, Oregon. The couch has the feel of corduroy. It is burgundy with brown weaving underneath, simple, tidy, and artistic like the rest of this home: Cheli’s touch. Next to me lies Arrow, their mixed breed shitsu and chihuahua, a small dog with brisley hair and a face that melts my sadness with her saucer-shaped brown eyes, dark whiskers, and warm alert ears. She likes to be close, but doesn’t need to be in my face. Right now she lies asleep on her side, her paws and breathing still, quite different than the moments when she darts from one space to another moving straight and surprisingly fast like an arrow from the bow (hence the name, though for some reason I want to call her Oscar—or Oscarita—and I always have to pause a moment to remember her name before calling to her.)

Their other dog Cooper lies, similarly still, on the floor by my feet. The three of us have been in the back yard this morning: me reading and them sniffing, and now we’re all resting and hiding from the sun.

I first met Cooper years ago, before he had such a large house and a back yard to roam in. When he met me at the door of the condo where Cheli and Taylor lived, he growled uncomfortably, clearly upset by my cane. His left eye, blue with blindness from abuse in the home he’d been removed from, startled me with its sharpness. Though he would eventually learn that I was safe, he always growled a little at my cane and gave it a wide berth when he walked by.

Today, it strikes me how much Cooper has changed. He seems not to notice my cane. When I struggled this morning to put on his bark collar, which delivers what I understand is a painful zing when he barks, he was patient with my tremorous fumbling and gave me ten tries to get it on. Though he’s several years older than he was when I met him, he bounces and smiles more like a puppy now than he did when he was younger. I can hardly tell that his left eye is blue with blindness now. He seems to have healed, and though I’m sure those early wounds are still there, for him the world is now safe and loving, and he is, too.

I have been treated gently in this world: raised in a loving a resourceful home and growing into adulthood without the trauma of violence that some experience. My partner, family, and friends love me and laugh with me. Mostly, the world acknowledges that I deserve to be here.

However, I believe I experience PTSD from brain surgery nine years ago and brain radiation six years ago along with three eye surgeries and a car accident where I was so trapped that my car’s roof had to be sawed off to get me out and whisked to the hospital. (Aside from some bruising and memories as well as blank spaces where memories about the accident might have been, I suffered little bodily damage.) My trauma, if that’s what it is, is hidden in my brain, inaccessible consciously though it enters my life during nightmares.

Big dogs scare me because I’m afraid they may disrupt my precarious balance. I especially don’t want strange dogs baring their teeth at me or even bounding puppy-like towards me. But when I’m sitting safely with a dog, especially with a small dog with big round eyes and a soft tongue (not in my face), I feel myself healing.

I don’t understand the residues of my trauma, and I don’t understand this healing. I only know that they are so.

And maybe that’s how healing is: invisible, gradual, in the unknowable recesses of our brains, and gentle.

Work

This Labor Day marks the fourth year that I haven't been part of the paid work force. Labor Day used to be the last day of summer, the day before school started. I always worked on that day, getting ready for the first week of school, and many of my colleagues buzzed about the building, too. I imagine that lots of teachers are working today despite the myth that teachers only work nine months and get summers off.

There is so much mythology in our culture around work. One myth is that pay is commensurate with the amount of work a person does. Not true. I had jobs where I got paid what to me was a substantial salary and other jobs where I received a salary adequate for my lifestyle. I worked hardest in the lowest paying jobs: teaching. Though these jobs were under-resourced, I found the work more meaningful and more important than my (much) better paid jobs. Because so much of my time, my life, was spent at work, it seemed important to me to do work that felt important to me.

Today, The Seattle Times published syndicated columnist Gina Barreca’s opinion piece, “Trying to find your passion? Find a decent job instead.” She has a point, that passion’s roots are in sacrifice not selfish desire, but she misses the idea that the goal of work is…well, what is it? Improving people’s lives or the world, adding to the generosity of spirit in the world? Taking only photographs and leaving only footprints? Caring for our own health and the health of others as much as possible? Creating a better world for our young? Anyway, I would argue that the goal is not only or even primarily making money.

I am more of the mind of Civil Rights Leader Howard Thurman, who said, “Don’t ask yourself what the world needs; ask yourself what makes you come alive, and then go and do that. Because what the world needs is people who have come alive.” Where we mislead our young is where we suggest that such life necessarily includes a hearty paycheck.

Since my brain tumors, I have not worked for any paycheck at all, and so this means in this culture that I might choose not to work, not to contribute. As I work with elders in assisted living and supported living in their homes, I hear from others who no longer earn a living financially, and are seeking still to live meaningfully. Too many of them, like too many of us all, equate earning a living with earning money, and now that they don’t need to do that—and in many cases cannot—they are at a loss for what to do with themselves.

One woman with advanced dementia says to me every time I talk with her, “Tell me, do I matter?” When I tell her she does, that she makes my life better (and she does), she always continues, “Tell me how. I need to know.”

Who are we and what value do we have when we no longer work, either by choice or necessity? This is a question I have been seeking to address in my own life since my brain tumors. And it is a question I see so many others who can no longer work asking. Do we matter?

At church yesterday, our pastor Ann challenged our congregation to “Labor for Love.” She challenged us to act in love. She never mentioned how much money we should make or give. This was not her point. Her point was that there is much work to do in the world and that we should get to it.

She included as part of the service a poem from Little Bit in the anthology Original Voices: Homeless and Previously Homeless Women’s Writings. The poem, titled “Life is..” begins by observing that life is “Movement” and continues with so many different ways and reasons for movement, ending with these lines:

But I think

that sometimes

it's okay to

just sit,

Think,

And remember

What

Exactly

We

Move

for.

There it is again: purpose, meaning. Why are we moving? Why are we working?

I make no money now, and I am privileged to continue to be supported by savings, my partner, Social Security for people with Disabilities, and health insurance (though the provider has lots of incentives to try not to pay me, so they pay a third of my insurance to a lawyer who makes them pay me the rest: it’s ridiculous.)

I also continue to work in the world, although I can only work eight hours a week and am not financially compensated.

I lead poetry and narrative reading and writing with elders. I work to build community in my church. I work strategizing with other leaders at the University of Washington’s School of Social Work to include Disability Justice in its curriculum and its culture.

When I left my career in education because I could no longer do the work that my job required, my radiologist/oncologist discouraged me from going to graduate school to work on a Masters in Social Work. He said to me, ““You will probably not be successful in school. Even if you are, you will probably not be able to get a job.” (I believe he was trying to protect me from failure, but I was pissed.) He was thinking about a job. I was thinking about work. They’re not necessarily the same thing.

I am doing well in school, and as I approach graduation this December people keep asking me what I’ll do after graduation.

I begin with what seems obvious: “I will not get a regular job, not even a part time one.” And then I continue with the ways I hope to work in the world: “I’d like to support individuals or groups. I’d like to figure out how to use my experience in teaching and my passion for writing to serve others.” I’d like to help the world have more heart and soul. I’d like to connect with those the world races past, people who are aging or slow or dealing with poor health, addictions, trauma, and poverty. These people are worth noticing.

Like me.

Perhaps you’ve noticed…

This year, I haven’t blogged as much as I used to. I’d like to blog once or twice a week, but lately I’ve struggled to write once or twice a month. It’s been a rough year for fatigue. I’ve just done too much with the energy I have.

Some of this has been under my control. For three quarters, I took a weekly writing class on Tuesday nights from 6:30-9:30 pm (way past my bedtime). Last fall quarter at the School of Social Work, I didn’t have to take a class, but I did extra hours for my practicum as I tried to figure out how to make the practicum a meaningful learning experience.

The extra hours knocked the wind out of me, so I wanted to move my winter quarter course from 2016 to 2017, but the woman who holds the purse strings at Department of Vocational Rehabilitation (DVR), the organization that was funding my social work schooling, required me to take the course in order to continue their funding. I’m not a typical student for that organization, which seems to work a lot with people who’ve lost jobs because of drug and alcohol addiction. Their mission is to help people who’ve been out of work go back to work, so it seemed to me (and many others, including an executive at a different DVR and my first counselor) that I was a natural fit for the organization.

However, when my original counselor left, getting support became much harder. Several leaders in the community who have worked with DVR, including the DVR executive I talked with, cautioned me that services can be very different depending on the counselor assigned to my case. After my first counselor left, it seemed clear to me that the person overseeing my case didn’t understand fatigue nor have much interest in supporting someone like me. I suspect she thought I was getting away with something. After hours of paperwork this spring—paperwork that became necessary only after my original counselor left—the department decided not to fund me. I learned this too late to apply for scholarships, but serendipitously, the School of Social Work awarded me a scholarship that I hadn’t applied for, so finances will be fine.

However, it will take me a while to recoup my energy. I just hope I will. In October I’ll begin my final course and practicum credits, and in December I should graduate. People are starting to ask me what I’ll do after I graduate. For starters, I’ll rest. Then I hope to get back to revising my first memoir and to supporting elders and others who are experiencing life-changes due to health and trauma.

I had anticipated that my energy would revive this summer. After all, I haven’t needed to take a summer class, so I’ve just been doing my practicum, which I did all year long in addition to taking classes. I thought I would return to more regular writing. Unfortunately, it’s been hard to even complete practicum hours as my fatigue has persisted and even worsened for a couple of months.

In addition to my fatigue being worse, I’ve struggled more with maintaining a train of thought in discussions and have struggled with other aspects of short term memory. My balance also worsened, so I scheduled an appointment with my doctor, who was of course on vacation for two weeks.

When I finally saw my doctor, I was already doing better. I suspect menopause is to blame. For the two months of memory struggles and awful fatigue, I didn’t have my period, and I returned to my post brain tumor normal after I had a period. When I saw my doctor, she agreed: “Yes, that sounds like menopause.”

I have been having night sweats and hot flashes for eight years, but I haven’t written about menopause before. After all, I was raised a socially-appropriate Southern girl, and I’ve been pretty sure that Southern girls don’t talk about such things.

I remember the first time I really heard about menopause, when I was in my twenties and I was in my first teaching job. My colleagues were at least two decades older than I was, and as I walked across campus with three women, they talked about menopause. I remember one saying, “We’re scaring Mary to death.” I was actually just amazed to hear about it.

The first time I heard about menopause in mixed company was when Joan, who was the assistant principal at a school where I was starting a new job, used “menopause” to model a vocabulary-teaching method. At the beginning of her presentation, Joan said that someone had commented on her evaluations the previous year that she should not talk about menopause. “I am,” she said. As part of the method, you said three people who were associated with the word and three who were not. Oprah Winfrey was. Donald Rumsfeld was not. I laughed hard at her hutzpah.

Around the same time, Ann and I went with our friends Ellen and Karen to see Menopause the Musical. Everyone in the audience was older than I was, most of them (including Ann and our friends) with white or grey hair. In an audience of 200 people, only seven were men, each of them with a white-haired lady. The audience whooped it up as women on stage fanned and sweated and flushed the toilet a lot of times. The others in the audience saw their past, but I saw my future. I did not laugh. At the end, audience members joined those on stage for an old-lady dance. I did not dance either. I just felt sick.

Now I’ve had two brain tumors, the swine flu, pneumonia, Shingles (twice), and a car accident where the roof of my car had to be cut off in order to get me out. I think I’ve had enough. I’m hoping from here on out, things will be easy-peasy.

They probably won’t be.