A Photograph of me without me in it

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

Tuesday, June 26, 2012

Old for My Age

My mom used to say that I was born an old soul, which I always took as a compliment. (I tend to take things as a compliment unless you tell me otherwise.)

Since my brain tumors, I have more in common with old ladies than I used to. I walk slowly with a cane. I laugh at bodily functions and at other times that temporarily-abled folk find inappropriate. I hold onto walls when I walk. I say, “Pshaw” when someone talks malarkey. I sit down when I shower and when I exercise.

I’ve joined the Silver Sneakers (no, Ann, not Silver Slippers) class at the YMCA. We sit in chairs and tap our toes and lift our weights to music that sounds like music to me. We each try to summon the coordination to bounce a rubber ball on the floor and then throw it in the air and clap once before catching it again. (My ball generally bounces off of a neighbor or two, but they never give me a dirty look. They just say, “Don’t worry. You’ll get there.”)

For squats, we stand up from the chair ten times. Sometimes our right foot circles clockwise while we snap in a counter-clockwise motion. That’s really hard for me.

I am 48 years old. I suppose that the other thirty or so, mostly women, are in the seventies and eighties.  I suspect that they are wise because they laugh a lot.

We had a potluck last week: two salads, a bowl of meatballs, and fifteen desserts.

These are my peeps.

Monday, June 25, 2012

Happy Pride 2012!

Ann and I celebrated Pride 2012 by marching in the parade with our church, a reconciling (for Methodists that means affirming GLBTQ persons and families), eating soup and bagels with tasty spreads from Eltana's in the Center House, and then cheering the Storm, Seattle professional women's basketball team, to a win in Key Arena.

As teachers and teachers unions marched by, we applauded, and Ann remembered her first parades in Seattle in the 1970s when teachers wore paper bags over their faces to hide their identities because coming out could mean being fired. A Seattle School bus for GLBTQ kids went by, and she said, "Wow. Times have changed."

The Greater Seattle Business Association, an organization that raises hundreds of thousands of scholarship dollars for GLBTQ undergraduates and their allies, marched in business attire and performed drill team moves with their yellow briefcases.

I love the Parade's colorful splendor and joyful spirit. We didn't sit close to the five ten people who are always at the parade holding obscene signs and shouting about damnation. Those people put a damper on a beautiful day and give Christianity a bad name.

Our church members carried a sunny banner and an arched rainbow of balloons overhead, so that as we marched Ann and I noted that we were in fact somewhere under the rainbow, and skies were blue. Some members carried signs with a dancing figure with the words, "It's about love" and others distributed stickers with the same design that I saw throughout the day.

Almost everyone wore a pink sticker that proclamed, "I am loved by PFLAG!" (PFLAG is an acronym for "Parents and Friends of Lesbians and Gays.") I always cry when they tag me.

The woman who sang the Star-Spangled banner before the basketball game wore a t-shirt Approve R-74, a Washington State Referendum on the rights of same-sex couples to marry.

The Storm organization donated $3500 to GSBA Scholarships.

Throughout the game, we heard, "Happy Pride!" and the lights that surround the stadium glowed in Pride's rainbow colors.

In the week leading up to Pride, the city seemed joyful, too. At the YMCA, a pride flag hung over the welcome counter. For Pride-Eve, Ann and I went with our friends Pea and Ally and Ally's cute friend Heath to celebrate with the Seattle Men's chorus, many of whom are gay. The men sang, "Somewhere Over the Rainbow" and we all sang, "Do-Re-Mi-Fa-So-La-Ti-Do...Do, a dear, a female deer..."

Though there's still bigotry, fear, and meanness (maybe they all have the same root), I remember the poem, "Sometimes":


Sometimes things don't go, after all,
from bad to worse. Some years, muscadel
faces down frost; green thrives; the crops don't fail,
sometimes a man aims high, and all goes well.

A people sometimes step back from war;
elect an honest man; decide they care
enough, that they can't leave some stranger poor.
Some men become what they were born for.

Sometimes our best efforts do not go
amiss; sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
that seemed hard frozen: may it happen to you

~ Sheenagh Pugh ~

(In Good Poems, ed. by Garrison Keillor,
contributed by Holly Thomas)

Saturday, June 23, 2012

Benefits of Brain Tumors, part 2 (Back by popular demand)

Brain Tumor Benefits, part two                                                      Friday, February 12, 2010

I'm not sure how I miscounted, but my midway point is next Wed, so your midterm will be on Wednesday. I know you're relieved. You have the holiday weekend to study.

This afternoon will be the second of a two-part series on the benefits of having brain tumors.

The most significant benefit of these brain tumors has been the access I've had to communities that I now realize I never had access to before: especially public interactions with homeless people and African Americans. It may be helpful to know that I am White. Pale, actually. Some would say “pasty.”

I have three stories of interactions with people who are homeless that I like best. Each occurred when I started taking the bus after my brain surgery. When I was downtown one day, leaning on my walker and hesitating on a corner to get my bearings to figure out where the bus stop was, two homeless men offered to help me across the street. Since I didn't need to cross the street, I said no thank you, but they insisted, so finally I crossed the street with them. One performed the wild gesticulations of a Frosty the Snowman traffic cop, and the other walked protectively by my side. I said thanks and let them get on down the block before I crossed back.

In another incident, I was riding the bus home from downtown one day while I was still wearing an eye patch on my left eye and a homeless guy next to me was flirting with me. He said to me, "You have the most beautiful [panicked pause] eye."

More recently, a guy who was waiting beside me at the cross walk looked at my cane and asked, “Hurt your leg?” I said, “No. My head.” His eyes travelled slowly from my cane to my face as he said, “Oh.” When his eyes met my crossed ones, his eyes bugged out,  and he said again, with more drama and awareness, this time “Ohhh.” When the light changed, he scurried across as if my tumor were contagious. He’d look back from time to time to make sure I wasn’t too close.

Interactions with African Americans have been the most dramatically different. There is some tension in this area, called Seattle’s Central District, between blacks and whites, particularly because this area has traditionally been an African American neighborhood but with gentrification it's becoming much more White. African Americans of all ages, though, are the most likely to stop and help me or ask me if I need help. Going through the park one day, an African American woman who seemed to be going through chemo stopped me, put her hand on my shoulder, and delivered a graceful prayer. A group of older teenage African American boys hanging out at the park, drinking whiskey and smoking dope, moved aside to allow me to pass and kindly wished me a good day.  It's hard to describe the change, really, but it's quite lovely.

Thanks for checking in and thanks for being one of the good parts. Mary
Originally posted on cantduckit.blogspot.com Friday, February 12, 2010

Wednesday, June 20, 2012

Mad. Very, Very Angry

I am caught in a snare between a disability insurance company that bullies me (aren’t they supposed to help me?) and the Medical Records Department with my health insurance (I think they’re supposed to help me, too.)

Their combined incompetence has cost me three half-days to travel to the hospital to fill out paperwork for them to lose, four different explanations about what might have happened, one honest “I have no idea what happened” and one “I don’t know if I can help but I’ll do my best”, nineteen phone calls, two nasty letter from the disability insurance case manager, and countless hours of lost sleep.

It may cost me the only hope I have of any income for the next five years, as I prepare for a new career since I can’t do my previous career anymore.

I keep singing the classic from Little Jerry and the Monotones on Sesame Street, “Very, Very Angry”:

(background singers): We're mad. Very angry, very, very angry.
Real mad. Very angry, very, very angry.

When someone socks me in the eye
And they don't even tell me why, that makes me mad.

(Very angry, very, very angry)

When I'm walkin' down the street
And someone stomps upon my feet, that makes me mad.

(Ya, we're angry, very, very angry)

When I’m tired or angry, my body lets me know it. Balance is more difficult. The intermittent Parkinsonian tremor in my left hand makes my hand feel that it’s floppng like a fish out of water. My heart beat races. My upper right lip jumps around like it’s been electrified.

Last night after another ridiculous phone call and contacting a lawyer and a disability advocate, I could not relax enough to fall asleep. The Parkinsonian tremor worsened as I imagined what I might say to these people when I can give them a piece of my mind. (Just an expression. My brain’s been fiddled with enough.)

I start thinking of all of the other things that made me angry yesterday…or ever.

When I thought my hand might never relax, I thought about the precept of Santosha, the focus on my yoga class on Monday morning (yea! My first yoga class since surgery five years ago!) Santosha, usually translated as “Contentment” is not a synonym for “happiness” but in my mind it’s more accurately a quality of stillness, even in a difficult time.

Molly, the teacher, pointed out that  Santosha is not a state of being, like happiness. “Santosha,” she said is a practice.”

As I lay in bed with my spasming hand, I wondered what practicing Santosha might require. I gave myself an assignment much like I used to give assignments to my students.

List everything that I am grateful for. 

The list is long, and I imagine an image for each item: my partner Ann, my family of birth, my church, my life, sunshine, the hummingbird that strifed us as we ate our dinner on the deck, our dinner on the deck, my trike, avalanche lilies on Mt. Rainier, John Keats’ Odes, my brain tumor support group, and so on.

As I imagined so much that I am grateful for, my hand stilled.

When my angry words crept in, and they did, my hand flopped again, but the moment I returned to gratitude, my hand relaxed.


I slipped into sleep remembering the words of my colleague Jenn’s Lithuanian grandfather: “It’ll all be okay in the end. And if it’s not okay, it’s not the end.”

“It’s not the end,” I slurred in my sleepiest voice to myself.

And then I slept.

Wednesday, June 13, 2012

Why I blog

I started blogging to communicate my thoughts and with my community during radiation for a second brain tumor. The writing also helped me clarify my own thoughts and feelings, and it helped me notice the grace in my life at a difficult time as well as the humor and absurdities in my situation.

I almost lost sight of that purpose last month as I started exploring how to use the blog to establish "my platform" so that I could convince agents and publishers that people would read my books. I started thinking of the blog as a marketing tool instead of as a way to reflect, communicate, and build  community.

I'm over that now.

Good friends Marie and Colleen, Pea and Ally, reminded me that I blog not to make my books marketable, not simply to tell my story of life after brain tumors nor of life with my partner Ann. I do not simply blog to rib my parents or my siblings (though that's a good reason.) I do not blog only to tell about life with disabilities or learning about the richness of life in my diverse neighborhoods, bus rides, and walks through parks and schools.

I write on all of those topics, but I do not write to teach about my life or my beliefs. I write to learn about myself and my world.

That is why I write, but I could keep my writing to myself as I did for the 46 years before blogging.

Why do I blog?

I blog to share my delight in discovering the world and myself anew each day. I blog to share a sense of humor and wonder in my life. I blog to connect to a community of readers. I blog (and now write books) in order to share the hope that, ironically perhaps, brain tumors brought me.

Life is so different, so much better than I thought it would be when I was a child. As a child, I believed that I had to create a plan and live by that plan. My parents and I never spoke of that plan, but I believe that we created it together. I believed that in order to live a full life I would need to follow this plan.

The plan: 1) Excel in school and in church. 2) Become a doctor or a lawyer. 3) Marry a man who is a doctor or a lawyer. 4) Have 2.3 children. 5) Raise a labrador retriever as part of the family. 6) Raise my kids to do the same.

As a child and young adult, I was anxious. Perhaps I suspected that I would not live my life according to plan, and in this failure I would be fail myself, my parents, and my God.

I did not follow this plan. Though I did pretty well with #1 in school and in church (well, there was that 8 year hiatus from church), I became a high school teacher instead of a doctor or a lawyer as #2 dictated. For #3, my doctor-husband and I divorced, and I fell in love with school-teacher (and woman) Ann. Instead of having 2.3 children as #4 dictates or a dog as #5 decrees, I had brain tumors. And a car wreck.

And yet, I feel that I am discovering the person that God created me to be. I am so surprised to be so joyful.

I blog to share my delight in living a life that has not gone according to plan. Sometimes, my life is fun and funny, and at other times it's hard. But I am living fully. I am learning about myself and my world.

I want to share the joy in my discovery: not living my life according to plan is living fully.

Amazing! (Please note that I seldom use exclamation points, so each exclamation point is in truth exclamatory.)

In my attempt to market, I limited myself to one post a week, as marketers say I should.

I don't want to overstate my point here. I do want to increase readership, and I do want to market myself to readers, agents and publishers. I need my marketing gurus. They do not need to change. I do.

In my attempt to clarify my niche, as the blogging gurus say I should, I almost lost the heart of my story. It's so easy to say that my blog is about living fully after brain tumors. As in most things that are easy to say and market, it's part of the truth, but it isn't the whole truth.

My story is more complex--and more universal--than that. At the heart of my story is a wonder in the delight I find in my life, myself, and my world.

So my blog will need to change again. When I figure out how to post a slide show, I'll post several. I'll post my brain tumor healing photos, the ones that are there now. The tumors are an important part of my story. But they are not all of my story.

I'll post pictures of Ann and me in our 17 years together. I'll post pictures of friends and family.  I'll post a picture of me on my trike, my new way of biking since the tumors. I'll post photos of a timeline: a child who thought she had to live by a plan, an ugly duckling, a teenager with big hair (it was the 70s) trying to live out that plan, a swan, and an adult who is living life, joyfully, not following that plan.

I'll listen still to my marketing gurus, who are wise guides, but I'll make decisions based on my purpose, which is greater than publishing my books. In my blogging, as in my life, I cannot limit myself to someone else's plan for my success.

I'll blog like I live: joyfully, fully, full of curiosity and wonder and discovery.

Monday, June 11, 2012

Life Gets Better--Really

“Don’t worry. These are the worst years of your life,” Writer, traveler and social worker Wendy Lustbaker said to a van full of 19 and 20 year-olds touring New Zealand.

“Things get better in every way except physically as we get older because we figure out who we are,” she continued to those of us, most with white hair, attending her Keynote at the Insight conference for people with low vision and blindness this weekend.

“As we get older, we actually get braver. When you come to some understanding of who you are, you get braver.”

People in the audience, most aging with vision disabilities, shared how their lives are getting better:

“I’m more courageous,” said one woman. “I’m hiking the Grand Canyon for my birthday.”

“Through macular degeneration [an eye condition that can lead to blindness], “said the woman beside me, “I’ve developed a sense of humor. I once mistook the pattern on a plate for salad, and I tried to eat it.” Her husband added, “She even put salad dressing on it,” and my partner Ann joined in on the fun, “The salad dressing’s the best part.”

“I don’t care about mean girls anymore,” said another woman with white hair, “and I can be smart even though I’m a girl.” Lots of white hairs around the room nodded.

Professor Lustbaker added something she heard from another older woman who was funny, and insisted on paying her bills with her credit cards, “Well, I might as well spend while I’m dying,” she said. “I won’t get the bill.”

Like these older people, my life has gotten better in every way except physically since I’ve gotten older and since I’ve survived brain tumors.

I wrote piece for an Asheville writing contest called “The Benefits of Brain Tumors,” a piece which was a finalist but did not win. The final judge said that my sense of humor “made it palatable.”

“Palatable?!” I whined. That suggests that my writing verges on distasteful.

I think this idea that aging and living with disease are tragic has so much popular traction that saying that that there are benefits is a lot like farting in the room and laughing about it. It’s uncouth.

Just as so many hands flew up to share benefits of aging, I share real benefits of brain tumors. Some are practical, like Ann and I get reserved parking with a pretty blue and white wheelchair insignia everywhere we go. I pay a reduced fare on the city bus. (So does Ann because she’s over 65.) I hope I’ll get disability payments to help since I’ve had to leave my work. (Dealing with insurance companies is not a benefit.).

Some benefits are more profound. I connect more easily with people who know struggle than I used to: older people walking with canes and walkers and I make jokes; homeless people ask me a little of my story; people selling Seattle’s homeless newspapers, “Real Change,” say, “God bless you” as I stumble past. I am White, and African-Americans in this area of racial tension say prayers of healing for me. Teenagers hold doors for me. The list goes on.

Professor Lustbaker talked about making life as good as it can be through the habit of generosity, a habit emboldened by old age and disease. She quoted an older man, “God acts through you, not just for you,” and she closed, “That’s the divine in us, making use of the gifts we were given.”

And I add: the divine in us calls out the divine in others, so my life and the lives of those I see grows gentler, kinder, more connected.

The idea’s only distasteful if you suspect it’s untrue.

But it’s true: life does get better.

P.S. I  know that marketing research says that I should post blog entries once a week, but I’ve decided to post whenever I have something that I think is worth sharing…at least every Wed but also whenever it seems right to me. I’ll write about why this Wed.

Wednesday, June 6, 2012

Angels and Devils

When I got the flu my first year of teaching at a Dallas private school, my substitute was an older woman with a bee-hive hairdo and horn-rimmed glasses. She terrified my students.

Her first day subbing, she walked into the room and announced, "I am the demon of your worst nightmare." My students came to believe her.

This substitute taught at another time for an English teacher who was out for a semester. The demon, as she called herself, divided his students into angels and devils. The angels sat in seats closest to her and could hear her lessons when she whispered, so they got good grades. The devils sat in the back and didn't fare so well. Other students were in purgatory in the middle rows. They got Bs and Cs.

I have worked with three insurance companies this year (it's been a rough year), and, like the sub with her students, I was labeling the companies as angels and devils.

Our home and auto insurance are through Pemco, an angel. When I had to be cut out of my car and raced to the trauma center's emergency room last June, Pemco covered my costs and dealt with the other driver (and I presume his ambulance-chasing lawyer), who sued me (wrongly, I believe.)

When thieves broke into our home and stole a laptop and family jewelry, Pemco reimbursed us quickly. Agents were always kind and professional.

I thought my health insurance organization was an angel, too. Their doctors saved my life and communicate easily with one another. Billing and test results have been timely and accurate. Though they didn't provide medical massage when it seemed clear that I needed it, their halo was only slightly tarnished. Even angels aren't perfect.

I thought my disability insurance company was a devil. The representative I worked with when applying for part time leave didn't return calls and sent me threatening letters. I think he's the only person I've ever yelled at on the phone.

I was beginning to feel bullied by the next representative, with whom I'm working for full-time disability from my job in high schools. Though I filled out requested paperwork and signed forms for the hospital where I have my health insurance to release information, my representative kept calling me to say that the hospital was not releasing my records.

She threatened to evaluate my application for full-time disability without medical records (which is the same as saying that my application would be denied.) I suspected that the disabilty insurance company was trying to frustrate me so that I would give up on my application. I felt bullied.

Milton's story about Lucifer as a fallen angel, however, should remind me that most of us are neither full time angel nor full-time devil, but are a mix of heaven and hell. Even Lucifer, according to Milton, was once an angel.

My hospital seems to have some glitches in its system, so it turns out that my health care system isn't so angelic and the disability insurance company is not so demonic after all. The disability insurance representative initiated phone conversations between the two of them since I wasn't doing to well as the middle-woman. It seems now that neither the health insurance organization nor the disability insurance company are full-time angels or devils. They're tweeners.

Maybe each of us, maybe even our organizations and businesses, is part angel and part demon. Part saint and part sinner. "Created half to rise and half to fall" (that's Pope, the poet not the pope.) A tweener.

And me, I'm a tweener, too.

P.S. I like to write too much to spend the whole summer reposting old posts that folks liked, so I'm writing new posts most of the month and I'll repost once a month.