Begging for Support

I've been working on my memoir in the eight years since radiation for my second brain tumor. I believe I have an important story to tell, but it's difficult to see how I'll get it heard (or read). I need help with the storytelling as well as with disability insurance that I had through my district and social security disability insurance. 

Perhaps this will give you some sense of my struggle: according to disability insurance contract, I can make up to $4680 in any month but can never make more and continue to receive benefits. To continue to receive social security disability benefits, I can make money (fifty dollars or  a million dollars have the same effect) in nine different months but can't make any money outside of those months. In case you're not following the details, the rules cancel each other out and mean I can't publish anything without losing one insurance or the other. Ann and I live on this money. I can't risk it.

I've talked with lawyers and advisors for the last couple of months, driving myself in circles. For now, I've decided to keep writing my memoir, write the best piece I can, and then see what I can do. In that spirit, I'm applying for a scholarship to a writing conference this summer. It's a prestigious (and expensive) conference, so this is a long shot, but it's worth a try. 

I've drafted the essay below in an attempt to convince them to pay for me to study with them. Any feedback?

I bowed my head and then raised it to see my face in the bathroom mirror. I looked just like I had the day before: auburn hair parted on the side and curled around my ears, eyes Bluebird blue, a freckled nose, high cheek bones, and laugh lines beginning to form. “I have a brain tumor,” I said to my image. I tried four times, shifting the emphasis from word to word, but the sentence always sounded improbable. The pronouncement’s melodrama made me laugh, but this wasn’t funny. At 43, I had a brain tumor and would soon need to tell friends and family, colleagues and students in my high school English classes.

A decade later, I no longer work, and I live on disability insurance, social security, and my partner’s retirement funds. Writing a blog and crafting a memoir ease my sense of loss. The writing is so important in managing my grief that I lead other writing groups and events for people who struggle: homeless young adults, LGBT elders, and people with dementia.

I have an important story to share, a story of loss and grief in the wake of my two brain tumors, but also a story of gratitude, the gifts of learning to slow down, connecting with other marginalized people, the often amusing absurdities in my life. The story is important, but difficult to share, largely because of restraints from my insurance and social security.

In the past, I have overcome social and financial barriers due to being a Southerner, a woman and a lesbian , and I feel confident that I’ll overcome barriers again. I’ll need help, however.

In addition to disability lawyers and advisors, I need to craft a good story that helps readers understand the losses, gifts, and barriers caused not only by brain tumors and their treatments, but also by social structures. I have never been to Bread Loaf, but my writing teacher says it would be a good support for me.

I need that support. I need to tell this story. You need to hear it.

The Trestle

At the YMCA the other day, my very smart phone decided to play Tony Rice’s  bluegrass song, “The Green Light on the Southern, Southern Railroad Line.” It was hard not to sing along to the refrain:

Oh, if I could return to those boyhood days of mine,
And the green light on the southern, southern railroad line.

Like Billy Collins’ narrator when he encounters the word “lanyard”

in the dictionary, the song whisked me into the past, and I recalled trips over Spring Hope’s railroad trestle with my Granddaddy Edwards. I must have been two or three when we climbed the trestle’s stairs and threw a penny on top of the train as it traveled under us.

I believe we did this multiple times: I remember the anticipation of going, and I’m the only one who remembers our trips up the trestle. My dad has shared other memories of Granddaddy and me together. Dad remembers that I loved to ride in the back of Granddaddy’s blue Ford pick-up. One day, Granddaddy wanted me to go to “the farm” where my grandmother had grown up and my Great Aunt Ben, her sister Aunt Leona, and Aunt Leona’s husband Uncle Bill still lived. I said I would go only if we could go in Granddaddy’s truck, which Granddaddy had loaned to a brother, but he retrieved the truck so that I would ride with him.

I suppose that story’s true: I have always loved blue pick-up trucks, though it’s never been practical to own one. I like the story because it shows how much my grandfather adored me. It also reveals my early bossy tendency.

In a photo, my grandfather holds me up to the mantle, by the family’s grandmother clock. My baby book tells me that after “Mom” and “Dad,” one of my first words was “clock.”

Another story my father tells is about the day my Granddaddy and I walked around the block in Spring Hope, (the NC town voted most like Andy Griffith's Mayberry), and we encountered broken glass on the sidewalk. I pointed to the mess and said, “Some bad boys did that, probably.” My grandfather was impressed that I had used the word “probably,” which I have long thought was because of the vocabulary, but lately I’ve been thinking that he was impressed with the concept, my thought that my assumptions were not necessarily true. This story I like because it not only suggests my precociousness but also shows my grandfather was wise, something other stories indicate as well.  My dad quotes Granddaddy’s advice on raising children: “Love them and enjoy them and raise so that other people will, too.”

Once, my grandfather’s Southern Baptist minister, Dr. Blackmoor, gave a sermon in which he talked about the two angels he had known in his life. One was my grandfather. I like to think about the angels in my life, too. This grandfather was one, though I didn’t know him long.

Mom told me about our trip to the cemetery after my grandfather’s burial. She recalls that she tried to explain to me that Granddaddy was under the ground there. She says I just looked puzzled, looked at the ground for a while, and then pointed up to the clouds. Like I said: precocious.

This grandfather, whom I knew for such a short time, is one of the angels in my life. I believe he's still with me. 

As I’ve told you before, I’m lucky.

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.

Affirmations

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.

*DEPARTING PORT

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?