A Photograph of me without me in it

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

Wednesday, December 27, 2017

The End and The Beginning

When Ann went out one morning last week to sweep the ice off of the front stairs, our puppy Dosey ran to the big chair in front of the window where she could watch Ann work. Watching Ann take out the trash, cook, and do the laundry are among Dosey’s favorite things. This is one of many ways that Dosey and I are alike.

My penchant for watching others work was not born when I had brain tumors. I suppose I have done this all my life. On my desk sits a plaque that Sister Jen gave me for Christmas in 1976, when I was in sixth grade. It reads, “Work fascinates me. I can sit and watch it for hours.”

My freshman year in college, a friend snapped at me one day when I stepped aside for her to open a door. “Why do you always do that?” she asked, clearly irritated.

“Do what?” I asked. I had never noticed this habit. As a Southern belle, I learned stepping aside for any handy male to open a door for me. An over-achiever, I suppose I waited for other women to open the door for me, too.

Decades ago, when Ann and I watched two women put up a tent next to ours, one watched and made comments while the other did the work. “Look,” Ann said, pointing to the watching woman. “She has your job.”

Ann had never mentioned this before, but I recognized the life-long habit immediately. We both laughed. (I am so lucky that Ann found this funny.)

Ann’s least favorite Bible story, and one of my favorites, is the story where Jesus visits Mary and her sister Martha. When Martha scolds Mary for not helping with the dinner, Jesus rebukes Martha, saying that by listening to Jesus, “Mary has chosen the better part.” (Well, he didn’t speak English, but that’s the idea.) Ann’s first name is Martha, and she takes this rebuke personally. She once gave a sermon titled, “Who will cook the dinner?” The answer, of course, was Martha. Or in our case, Martha Ann.

My disabilities have deepened this divide. Now I don’t cook because I’m afraid to use fire or knives, and I can’t remember to do things like turn off the stove. I don’t take out the trash because of imbalance, and I don’t do much laundry because with fatigue I have to take long breaks, and Ann doesn’t like her clothes to sit in the washing machine while I nap. More than ever, I watch. Now, Dosey watches with me.

Sometimes, Ann and I call Dosey, “Princess.” She’s cute, less than ten pounds with curly brown and white hair, a wiggly body, and a wide-open smile (unless she thinks we’re going to leave her in the house by herself). Cute and bossy. If someone’s too loud outside after she’s gone to bed—or if a loud car drives by or a plane flies overhead—she barks until they settle down. Also, she likes to be the center of Ann’s and my attention, so as soon as we say grace before enjoying a meal together, she begins gnawing on our wooden furniture to get our attention, not something she otherwise does. More, when she walks with Ann she holds her head high, bent tail alert, and prances down the sidewalk.

This fall, our 97 year-old neighbor Annabella asked about the puppy, and Ann said, “She’s getting kind of bossy.”

Annabella, who can be bossy herself, laughed her cannon-ball laugh, and her eyes danced like they do when she’s amused. “Of course!” Annabella said, “She’s a woman!”

The year before my first brain tumor, I was telling a guy on the MLK march that I would be going to school the next year for my principals’ certification, and he said to me, “You have to be bossy to be a principal. Are you bossy?”

I had to admit I was. “I have certain boss-like tendencies.”

In addition to supervising others’ work and having boss-like tendencies, Dosey and I have other similarities. We both sleep deeply and often, and love to curl up on my giant orthopedic doggie bed in front of the fireplace. (Doggie beds aren’t just for dogs anymore.) We both drink a lot of water, and often drip on our chins. We both adore Ann. And we both love to play a game with Snake, one of Dosey’s favorite toys. (Though I’m beginning to feel like parents who complain about reading Good Night, Moon, a zillion times to their young ones.)

Though we’re both bossy, Dosey and I are also patient, something my students and teaching mentors often commented on. When I go down the stairs from the bedroom, Dosey loves to scamper ahead, but she waits, descending a few stairs and then looking at me, waiting for me to catch up. When we walk outside, she generally zigzags ahead of me, moving forward slowly enough so she doesn’t upset my poor balance. (That is, unless she’s sees a squirrel, in which case she pulls to the leash’s end and hops on her hind legs, pulling me forward.)

Yes, Dosey and I have a lot in common, but she is also different than I am. For one thing, she’s a dog. I’m a human. She’s extraverted, while I’m introverted; for example, last week, as she and Ann walked past the food bank in our neighborhood, she stopped to greet each person in line, inviting them to pet and adore her. In contrast, I am miserable at parties where I have to meet and chat with new people, and I don’t like to be the center of attention. Also, she wags her tail so that her whole body wiggles; I almost never do that. Additionally, she pees and poops when she walks in the neighborhood: another thing I try to avoid doing.

Dosey has a lot to learn from me, and I have a lot to learn from her. From me, she’s learning to sit and lie down, to dance on her hind legs and gimme five. From her, I’m trying to learn to greet people joyfully, even when they’ve upset me. I’m trying to learn to eat every bite with absolute delight. And I’m trying to learn to be fully emotionally present in each moment, as she when she greets me each morning, as if to say, “I’m so excited that we are here in this home together, so delighted to see you again as we greet this new day. I can already tell that, with you, this is going to be a great day!” I’m trying to learn from her not to worry so much about tomorrow, but to love this day.

Wiggle, wiggle, smile and squiggle.  This is my new life.

Saturday, December 9, 2017


Tuesday afternoon, sleeping on my giant doggie bed in front of a winter fire, I was awakened by a firm knock. I thought of Edgar Allan Poe’s “The Raven” :

         While I nodded, nearly napping, suddenly there came a tapping.      
         As of some one gently rapping, rapping at my chamber door.                                 

It was not the gentle rap of ravens, but the kind of delivery people give, so I started to ignore it, but I thought I should check just in case. When I opened the door a crack, my puppy Dosey and I could see that someone was there, so I said, “Hang on,” closed the door, gathered Dosey into my arms, and re-opened the door, wide enough to see the person this time.

A forty year-old woman with red hair and a big smile said, “Hi, Ms. Edwards.” At first I didn’t recognized her but then saw in her eyes a teenager from twenty years ago.

“Oh, my gosh! Come in!”

We sat in the living room, and she and I shared some stories to bridge the decades. Then she gave me the book The Ironic Shituation: the actuality of Everything, a book she published in 2016, and I leafed through it. For some reason, I paused at the Gratitude & Appreciation page. I read this:

My high school English teacher Ms. Mary Edwards—I appreciate the way you challenged my intellect. Thank you for the freedom to find and express my own voice in your assignments. I felt my mind come alive in your classes.

I was stunned. This appreciation from so long ago, an appreciation I did not at all expect, means so much to me. In these post-tumor days when I can no longer teach, this note reminds of how much my students meant—still mean—to me. It makes me feel that, though I didn’t have the impact on public education that I aimed to have, my teaching made a difference to some students in ways that I would never have guessed.

Thursday night, my partner Ann and I had dinner with another of my previous students, this one a freshman in my English class in Dallas in 1990. He was in Seattle from New York City to defend his PhD dissertation in Psychology at The University of Washington.

Ann and I got together with him and his partner when they lived in Seattle, so Thursday’s meeting was not a surprise. Seeing him again for the first time a few years ago, however, was a surprise. Each time I see him I appreciate the unexpected connection. Once, he told me about a time in class when I invited students to share a thesis if they had one for an upcoming paper and to share any ideas which they had decided not to write about. They could steal someone else’s discarded idea if they wanted to. He did.

What I remember about that time is the sense that I had no idea what I was doing: “imposter syndrome,” this student, now a man, told me. I was glad to hear that in those early days I did something that seems to me now like good teaching.

From these visits, and from the cards, Facebook posts, and emails, I feel like some of my previous students tell me that I was a guide in the way I wanted to be: perhaps I helped them find their voices and a possibility that they were okay—not only okay, but miraculous—as they were and would be okay —even miraculous—in the future, even if they would be different than they or their parents had imagined.

Now that I can no longer teach, these students—now adults—tell me that I was okay—even miraculous—in my teaching days, and perhaps I’m learning from them that I am still okay—even miraculous.

My life has shifted with all that I cannot do, though I realize my life would have shifted anyway (because lives do that). I am lucky to find things that I can do, perhaps things that I couldn’t have done before.

Last Friday, with the poet Roberto Ascalon, I facilitated a reading (mostly poetry and one very short short story) by seven people experiencing memory loss, and a wife and a daughter of people with memory loss.

The reading was lovely, peppered with poets’ statements of belonging like “I’m still here” and “I am. I am a work in progress. NOW.” And one poet’s doleful questions:
*Who will hold me tight?

Who will whisper “I love you”?

Indeed, who even will remember me?
The poet Holly J. Hughes read her gentle poem “The Bath” from the anthology she edited, Beyond Forgetting: Poetryand Prose about Alzheimer’s Disease (Kent State University Press, 2009).

Then on Thursday morning, a writer in a group with young people who are homeless beamed with the news that he would be starting college in January. He told the group, “When I experience something painful, I can write it down and put it to the side” (he accompanied this explanation with the visual act of moving papers from in front of him down the table). “That way, it’s still some place, but it’s not in me any more.”
No, I wouldn’t have asked for these brain tumors or these disabilities, and I wouldn’t have left the field of education if I’d had a choice. But today I’m feeling that my time there was meaningful, though it’s gone. I live a new meaningful life now, one built on days past—days that are no longer possible for me—but also an awareness that now I live in new possibilities.

By Philip Culbertson
Slowly, I’d begun to notice the great ship― 
built so rigorously, moored so carefully― 
drift slowly, slowly, out into the open sea.

I had hoped that was an illusion, for
I had been concussed and was no longer sure what was true.
I had hoped for better.

Freud assured me that my ways of thinking would continue to be stable,
but my brain responded: 
“You think you can ignore me, but I know better. You are a jokester.”

I thought a jokester was like a jester—a wag, a wit, a harlequin, but
rather than laughing, I suddenly found myself weeping, day after day,
asking “Why? Why me? Why now?”

“I’m not yet done with living,” say I, 
yet my body screams “You’re done!!!”
Can this truly be the end?
I’m not quite through living, even when my time is short.
Who will hold me tight? 
Who will whisper “I love you”?
Indeed, who will even remember me?

Tuesday, November 21, 2017


Last week, I attended an orientation at Seattle’s Juvenile Detention Center because my current goal is to work with small writing groups of people experiencing trauma. I was excited to learn from Pongo, the organization leading this project, and to work with these youth. (When I was teaching high school, some of my students went to “Juvie” for short or long stints, and I loved those kids. This would be a new way to serve and get to know students I loved and feel could live life on their terms, terms that would be healthy for them and their communities.)

At this orientation, however, it seemed that my disabilities raised concerns: for the trainer and for me. Usually, when someone thinks I can’t do something because I’m disabled, I work to prove them wrong, but this time the concerns seemed legitimate: I couldn’t take my cane into the area where we would work with teens, but that was easily solved. More difficult were the upcoming 50% increase in teens housed there because teens from a Kent facility housing youth who were being tried as adults were being moved to the Seattle facility. The facility will be packed, and there isn’t yet a clear plan about how to manage the changes. Some teens from Kent are from rival gangs: nothing to be casual about. The center is hiring 50% more staff, so new staff will be learning their jobs: again, nothing to be casual about.

After the training, the Pongo director contacted me to say that he would check back in after things settle down in a couple of months, but for now there are too many safety concerns for me to volunteer there. I agree, but this is still disappointing.

Two years ago, I attended a training from Pongo, a group that writes poetry with incarcerated youth and other struggling groups, using poetry as a means of self-expression and personal value.

My own experiences with teaching writing and using writing for myself after brain tumors has been that writing can be an important, ongoing part of healing. Lots of research, such as a 1983 study by Psychologist James Pennebaker and graduate student Sandra Bell  ,  concludes that writing heals trauma and grief.

So in my post-tumor, unemployed and disabled life, I’ve been trying to find ways to support others struggling with loss and trauma. Right now I’m volunteering with three writing groups: with homeless young adults, people with dementia, and GLBTQ people over the age of 50.

When I left my career in secondary education in 2012 because my disabilities didn’t allow me to continue that work, I researched careers as a mental health counselor for people with life-changing health conditions, reasoning that I could still sit, listen, and think and that my disabilities could be an asset, as I understand what it’s like to have such a condition. From this research, I concluded that I would need an MSW from a well-respected school, and my goal-oriented self started working towards my next career immediately. I thought I’d become a one-on-one therapist, and I took five years in a Masters of Social Work program at the University of Washington in order to reach that goal, but after receiving my degree, I realized my disabilities make getting licensed impossible. (The university time wasn’t wasted: I needed to time to heal and adjust that I wasn’t allowing myself, and while in school I learned about group therapy and poetry therapy.)

Most recently, I’m focusing on sharing opportunities for writing as healing. This focus started years ago, with writing this blog and getting to know groups that work with writing as healing. In April, 2016, I attended a poetry therapy conference, but realized their approach didn’t sing to me. I also attended a Pongo training, which sang operatically to me. It hit the high C, and I thought, “This is what I want to do!” However, I wanted to graduate from the UW with my Masters and give myself more time to heal and write before applying to volunteer with their organization.

I graduated last December with my MSW, and I now volunteer with writing groups for homeless young adults, people with dementia, and LGBTQ people over fifty. The work fills my heart.

This summer, I applied to volunteer with Pongo and was excited by all that I would do and learn. The first invitation was to work with addicted adults in a center that provides housing and works to reduce harm rather than end peoples’ addictions when those addictions have persisted through multiple programs. At this site, I thought I might also get involved with a UW study. One bus away: perfect. But that possibility fell through when the program there ended (or never started, I think.)

Then I was going to join a group that went to the state’s Mental Hospital for children. Though the commute would have been about an hour or more south of Seattle, and I was concerned about fatigue, I was excited to work with the experienced and dedicated leader at that site.

Before starting that work, a position with the juvenile detention center near my home opened, and I switched to that team. Now that’s not going to work, so my goal-oriented self is flummoxed. What’s my next goal? I need to find it fast.

This goal orientation has directed my life, and that orientation persists even though I have often found that goals weren’t that good for me, and I “learn” over and over that I’d do better to listen to what life and my soul say to me. I’m learning that again now. I wonder if the lesson will ever take root.

As a child, I over-learned this goal orientation. I remember trying to reach a goal in the mile when I was in middle school.

Usually when I ran around the track at night, trying to please my father and run the mile in eight minutes, my lungs felt hard and my throat hurt. I felt like I was drowning: I could not get a deep breath. My legs, deprived of oxygen, felt heavy, and the way to where I started seemed so long—And yet I had to run that dastardly circle four times.

Each night, my dad held the timer, a stopwatch that clicked away the seconds. He, my younger sister Jennifer and my little brother Matt, and I jogged dutifully. My siblings and I all had times to meet: whoever met the goal that my dad had set got to go to dinner at The Angus Barn, Raleigh’s only five star restaurant.

My brother and sister had both made their times a week or so before this night, but they were still running, as my dad expected. I had not yet come close to my eight-minute target, and tonight was my last chance. I didn’t care about the prize except that I didn’t want to be the only one left out of this family celebration. I was the oldest child after all. Not meeting my goal would be shameful.

On this last night, a slightly cool mist settled over the track, and my breath came easily. My legs loved the stretch as I glided around the circle four times; then I went two more because running felt so good. I could have run all night. Now I understood why people ran: they must have felt this good all the time. I don’t remember my mile time, but I easily beat the goal.

Since that night, I’ve worked hard to unlearn the goal-setting habit. I will not time myself or set a goal of writing a certain number of pages or saving a certain amount of money. I won’t count calories or go on a diet. I suspect goal-setting succeeds in our hyperactive culture, but it seems to me that focusing on the present instead of the future is healthier.

As a high school teacher in the 1990s, I bristled at the career pathway movement. Should we be teaching teenagers that they should have a career goal already? Does that paralyze exploration? Joy?

I am still trying to learn what I glimpsed forty years ago. That night when running felt lovely, I promised myself that I would live for those moments when my breath comes easily, and I seem to glide through the night.

I wonder if the lesson will ever take hold.

Saturday, November 11, 2017

In Memoriam: Auntie Myra

My Auntie Myra died Tuesday at the hospital after she was hit by a car. She was walking (always walking) in a crosswalk, and a car going 20 mph hit her. This piece is in her honor and for her children, my cousins Anna and Mark, for her brother, my father, and for the extended family and friends who loved her. She was an energetic soul, an adventurer with a generous heart, and I know we will all miss her.

The last time my partner Ann and I visited Myra, Anna, and Mark at Myra’s condominium in Bel Air, Maryland, Myra had ordered a pizza-sized chocolate chip cookie for us all. The only thing I can remember in Myra’s refrigerator when I had visited her house was a passel of containers with broccoli slaw, so I’m pretty sure the giant cookie was an aberration, a celebration of our connection.

Myra has been a deep force of affection in my life for as long as I can remember. We had a lot in common. When I was quite young, not yet in kindergarten, and was visiting my grandmother in Spring Hope, North Carolina, Myra (whom I called Auntie at the time) invited me to sleep with her in the double bed in her childhood room. She warned me that she moved around a lot in her sleep. I was so excited to sleep with my Auntie, and I slept soundly that night, but apparently Myra did not. I guess I moved around a lot in my sleep, too. If I remember right, she said that at one point she woke up, and I was climbing over her.

Whenever Auntie came to visit our home in the Raleigh suburbs in those early years, she would open her arms wide and give me a full body bear hug. I remember my dad walking in the kitchen when she was hugging me once, and he said, “Oh god.”

In her best impersonation of Edith Bunker, she said to him, “Aw, c’mon, Archie,” summoning the television character my dad loved.

Auntie and I both loved to read. One of the first books I remember from her is Aesop’s Fables, an oversized children’s book that I read so many times the deep red and green cover fell off. (It’s not surprising that she was hit walking to the library where she volunteered.) I also remember that she gave me Betty Smith’s A Tree Grows in Brooklyn, the first book I read twice. I finished the last page and immediately turned back to page one. What a gift!

Throughout the decades, when I visited her Bel Air home, I stayed in her guest bedroom with the “Bloom Where You are Planted” framed embroidery. Along with the words, she had stitched a red flower in full bloom, and I always imagined her stitching this piece, the sadness that it suggested and that she never spoke about to me. In the life I witnessed, there was so much love: for me, her children, her cats, her work….

Myra worked in the schools, like I did. I’m not sure what her title was, but in recent decades she worked at the district level, responsible for getting truant kids to go to school. I remember that sometimes she would take them food, clothes, and school supplies and drive them to school herself.

We were also alike in our love of adventure. My dad would laugh about her letters from trips where she would write things like, “Having a great time. My body hurts from the day’s hiking, and the single bare bulb over my bed attracts so many moths that I can barely see.” My dad thought it was hilarious that she was having a great time in such a place: his idea of camping, he once told me, was a Motel 6. I loved such adventures, too.

Myra and her daughter Anna came to Seattle several times. Once was for Ann’s and my commitment ceremony, so I see her photo amidst the well wishers every day. On another visit, the four of us biked to the Red Hook Brewery, a ride Ann and I did fairly often though it was long and exhausting. About a mile from the brewery, I noticed that Myra’s back tire was flat. “I thought I was just a lot slower than the rest of you,” she said. “I’m exhausted.” We had lunch and Ann biked home to get the car, a respite for us all.

Myra might have been more politically liberal than I am. I can’t say that about many people.

I miss her deeply. I feel like I have a weight on my chest that makes it difficult to breathe, but my Auntie remains with me, too, in some way I can’t explain, some way that goes beyond the memories and is more like my skin.

Last week, I wrote an In Memoriam piece about my uncle Tommy, who died last Friday. Auntie Myra died Tuesday. I'm hoping this will be my last In Memoriam piece for a while, but Mom says bad luck comes in threes and Ann and I shouldn't take the stairs. "Be careful," she said. You, too. Be careful.