Hope

For Emily Dickenson, "Hope is the thing with feathers." For Woody Allen, "The thing with feathers is my nephew." For me, hope wears a stethoscope and is featherless.

These past few weeks, I've been pursuing part time disability in the school district where I work as a Literacy Specialist. Because I feel ambivalent about the change, the pursuit has been hard.

I am aware that fatigue and other disabilities are making full-time work impossible, so the possibility of a part time job causes me shoulders to relax and my breath to travel to my abdomen instead of catching like a hiccough in my upper chest.

I feel sad, though. I've  committed my adult life to teaching high school students, and I have at last landed in a district wiht a tremendous diversity of ethnicities and language that commits to making real the pledge to teach every student. Since neurosurgery in 2007, I've been working as a Literacy Specialist in the Highline School District in Burien, Washington. I've spent my days helping passionate teachers plan to meet the needs of their students and working with these teachers and their students. It's a great job, and it's taken me twenty-five years to prepare for it and to find it. It's hard to leave it even a little.

I've felt sad, too, because I have worked hard not to give up a life of meaning in response to these brain tumors. Continuing full-time work in education has seemed central to continuing to live meaningfully.

Yesterday, my doctors at Group Health helped me to see this move differently. Dr. Herstein encouraged me to understand that in order to live fully, I need to find a way to live with these disabilities, not just to power through the fatigue and other challenges. My Nurse Practitioner Amy Lynes, always one with the human touch, hugged me as I left her office. My primary care physician, Dr. McCandless, described me as a person who puts positive energy into the world, and commented on how lucky Ann and I are to have found each other. I don't even know if she was aware of how much doubt she was addressing, but I felt eager to live my life anew when I left her office.

In the paper this morning, I read about another woman, the legendary women's basketball coach, Pat Summit, who has been diagnosed with early onset Alzheimers. The Seattle columnist Steve Kelley applauded her courage and lauded the way that in continuing to coach, she will teach the rest of us how to persevere in difficult times.

Kelley's interpretation of Pat Summit's lesson is not the lesson for me right now. I am trying to learn to let go of the details of an old life and to live a full life in my new life. I have been doggedly persistent, perhaps excessively so, my whole life. Now I'm trying to learn what to change and what to maintain as I learn to live with changes that I cannot control.

I guess in the oft quoted serenity prayer, "God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference," I seek the wisdom and the courage to know the difference.

The Talker and The Reader Growing Up

This summer when we saw our nephews Willie and Hayden at the beach, we were especially surprised by how much they've grown up since last year. Though they've just moved one year, from ten year old to eleven, they seem to have aged out of childhood and into early adolescence.
They were constant companions this summer. It's fun to see their friendship developing.
“What are birds' wings made of?” That's my sister's youngest son, Willie, when he was three years old. He's always asked the most amusing questions. He's a talker.

He's always been a fun one to watch. When he was small, he would crawl into my lap when we played board games with his older siblings. I lost significant years with him when I had my tumors, which is hard, but he's too old to climb into my lap anymore anyway.

Last year, on the way to our wedding, Willie lost his favorite quarter, so Ann and I sent him a new Canadian quarter when he and his family left. He wrote us the first thank you note we've ever received from any of our nieces and nephews: “Thank you for giving me what I really wanted.”

On the drive from New York to the North Carolina beach last year, Willie said he didn't like carrots, and--bored with the drive--his mother, my Sister Jen, told him she had been putting carrots in his cereal. When he doubted her, she said that she had been bleaching them and cutting them into cereal shapes for years. He was flummoxed. “That seems weird, but I know my mom wouldn't lie to me.” Such trust, even after the tooth fairy betrayal.

This summer when I played Scrabble with Willie and his older brother Jack, Willie decided that it would be better if we didn't keep score for him, so that he could just learn to play. He talked aloud to himself the whole time: "OMG is a word now!" and "I could do 'BIG E' (my dad's nickname.)

Like his siblings and his father, Willie loves tennis. Sister Jen says that when Willie plays tennis, he talks to himself the whole time. She quoted him: "Okay, Willie, I'm going to say this one time and one time only. No double faults!"

I wonder if he listens to himself.

Willie's cousin Hayden is my brother's oldest. He is blond, blue-eyed and beautiful. He is a big fan. Last summer, even though all of his cousins love the Red Sox, Hayden wore his NY Yankees hat the whole time he was at the beach with all of us in North Carolina. For the World Cup, he bravely cheered on the Netherlands while the rest of us cheered for Spain. That takes spunk.

When Hayden and his younger sister Lucie were looking at old pictures a few years ago, they saw one of the two of them together when they were younger. In the photograph, Hayden’s young arm was wrapped affectionately around little Lucie. Hayden said to Lucie, “See, Lucie. I used to like you.”

Hayden’s always got his nose in a book, a characteristic of his mother and his aunts and now of his father.

I suppose he'll Scrabble royalty before long.

My Own Private Idaho

I was sceptical about Ann's idea that we go biking (well, her on a bike and me on my trike) in the Coeur d'Alene area of Idaho. When I think of Idaho, I think of potatoes and neo-nazi groups, but I was as wrong about Idaho as so many people are about the American South. It was beautiful, and the bike trails are fabulous.

We consulted Sheila (full name Georgietta Patricia Sheila), our GPS, about how to get to Harrison, Idaho, but the dealer told Sheila that we'd want to know the fuel efficient route instead of the fastest route. Sheila took us on a series of short cuts that my Granddaddy Matthews would have appreciated.

We started in Harrison, with our friends Susan and Rod, staying at the Lakeview Lodge and biking both ways on the Trail of the Coeur d'Alenes. The trail is over 71 miles of paved railroad right of way, but we just did a little piece each day. One day we biked on a tressle over Lake Coeur d'Alene and the next day we went the other way, along a river and a series of chain lakes. The trail is almost entirely flat, and every inch is lovely.

We stayed at the beautiful, somewhat funky, Lakeview Lodge, and our rooms had decks overlooking the lake. I'd recommend them.

There was a little tension one morning. A woman with a one year-old German Sherpherd and a man who was angry because the dog bore his teeth at him when he was doing the laundry and also because the dog barked during the night (I found this irritating, too) got into an altercation. Dog Lady was calm, but somewhat patronizing as Mad Man yelled more and more aggressively at her. When he yelled, "This is Idaho, Lady, it's not Mexico" (I'm still mulling over exactly what he meant by that), and he moved towards her, the very nice owner (a guy who might have been an inn keeper on the t.v. show "Northern Exposure")...anyway, the very nice owner intervened and said, "This has got to stop."

We left on our bike ride, and when we returned Dog Lady and her puppy had checked out. I don't know about Mad Man, but we didn't hear him again. We were glad that our hotel was not taped off as a crime scene.

We all love dogs and had our own dog stories. I loved Rod's story about Smokey the Dog, a dog on his newspaper route one summer when he was an adolescent. The dog terrorized Rod all summer, and one morning at the end of the summer, the owner was in the yard and told Rod, "He won't hurt you." Rod turned around to face the owner, and the dog bit him in the butt. The owner seemed non-plussed and said, "Oh, well. He's never bitten anyone else."

(Everyone but me had been bitten at least once. If you own a dog, please respect others' nervousness. Thanks.)

We tried fifty percent (two) of the restaurants and were underwhelmed, but we had great Huckleberry Ice-Cream at the creamery where "one scoop" is really about five scoops.

Farkle friends (oh yeah, they're church friends, pub friends, auction friends, El Salvador friends, and just plain friend friends, too) John and Jerry joined us Thursday night. I won the first game of Farkle  (I have to tell you that), and then I went to bed while the others played a half game (to 5000 points instead of 10,000 points). Susan, I see in John's scoring notes, was the "half winner." I love it that Susan's a "half winner."

Friday morning, we drove to the other end of the trail and rode a piece of that trail and all of the Hiawatha Trail. We went downhil all day, not a good thing for hospital patients but an excellent thing for a tired triker.

The Hiawatha Trail travels on an old railroad bed high in the Bitterroot mountains. It winds through ten very dark tunnels and seven high tressles. The first tunnel is in the trail's first ten feet and runs 1.67 miles in utter darkness with water falling into gutters that bikers want to avoid along the sides. If you go, take a bike with mountain bike treads and several good lights. Jerry dubbed our lights, "Artificial Sun," and we were very popular through each tunnel.

On the drive  back to Seattle, Ann and I listened to the Indigo Girls song, "Bitterroot." Below are the lyrics so that you can sing along if you want to. You take the lead and I'll sing harmony:

Tonight I'll be sleeping on the mountain top,
I got a billion stars for my witness.
In the morning I'll go down and the sun comes up,
I'll take a drink from the Bitter Root River.

Have you been lonely?
Yes I've been lonely.
I've been lonely too.

Tonight I'll be sleeping on the mountain top,
I got a billion stars for my witness.
In the morning I'll go down and the sun comes up,
I'll take a drink from the Bitter Root River.

Have you been travelin?
Yes I've been travelin.
I've been travelin too.

Tonight I'll be sleeping on the mountain top,
I got a billion stars for my witness.
In the morning I'll go down and the sun comes up,
I'll take a drink from the Bitter Root River.

Don't cliticize me!

Cliticize doesn't mean what you think it means. It means to use only a part of a word and to substitute an apostrophe for the rest. In "I'm," for example, 'm is a clitic.

I learned this from Roy Blount, Jr's, book, Alphabet Fruit. Reading the book is more like reading a narrative Oxford English Dictionary, where etymology is especially interesting and amusing. (If you listen to public radio, you may know Roy Blount, Jr. as the cowboy poet.)
I'm learning other good words, too. "Oology" means just what it looks like: the study of eggs. "Ugly" was an old Icelandic word meaning fear.
I also learned from the cowboy poet that google was named for the term "googol." A googol is a large number equal to (i.e., a 1 with 100 zeros following it). Written out explicitly,

10000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000000.

The term was coined in 1938 by 9-year-old Milton Sirotta, nephew of Edward Kasner (Kasner 1989, pp. 20-27; Bialik 2004). Kasner then extended the term to the larger "googolplex." It should be noted that "googol" is indeed the correct spelling of the term, so the spelling "Google" refers to the internet search engine, not one with 100 zeros.(http://mathworld.wolfram.com/Googol.html). The Cowboy Poet comments that "Google" is friendlier than "googol." He's a poet because he thinks of things like that.

"You" is, according to the Cowboy Poet, the most common word in English, and "I" is the second most common. He doesn't say what the least common word in English is, but he does point out that English is the only only language in which "I" is capitalized. (unless, of course, you're quoting ee cummings.)

I get irritated with sporscasters, and so does the Cowboy poet. Recently, I've noticed that sportscasters say, "All of a sudden" all the time, even in contexts where that's clearly not true, as in this basketball sportscaster's comment: "All of a sudden, your team is behind by twenty."

The Cowboy Poet criticizes sportscasters (and I would add others) who misuse, "hopefully," and put it any ol' place in the sentence. My poet man says, "Maybe that doesn't bug you, but it bugs me."

The best thing about this comment is his Southern accent, which extends the "u," sort of like, "It buuugs me." Or maybe a googol of u's.

It buuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuugs me, too, Roy.

Good Reads

Have I told you that I'm writing a memoir?

In order to write this memoir, I have studied other memoirs and am grateful for the opportunity to learn from so many fine voices

One early memoir, Thoreau’s Walden, tells of Thoreau’s reflections on his experiences in a little cabin by a little pond. As a teenager and young adult, I was inspired by Thoreau’s passion for seeking the truth. That passion inspires me still.

Another early memoir, Elie Wiesel’s powerfully slim volume Night, invited me into the young Wiesel’s central question: Can there be a God of goodness when pain and cruelty hold such sway in this world?

Both texts integrated storytelling with reflection on larger questions, both were about both the circumstance and the thinking about that circumstance. I hope my book combines storytelling with existential questions. I hope my book is about fear and courage. I hope that it is about doubt and faith.

With my freshmen students in my last year of teaching high school English, I read and studied Luis Rodriguez’s excellent memoir, Always Running: La Vida Loca, Gang Days in LA. Rodriguez began writing the story of his involvement in gangs and then his separation from gangs when he was a teenager. He finished the memoir as adult when his son began getting involved in gangs, but the story was not powerful enough to keep his son, who is now serving a life sentence for manslaughter, out of prison. A colleague told me of a freshman in her remedial reading class who was reading Always Running, though it was significantly above his reading level. When she asked why, his eyes swelled with tears, “I want to learn how he got out.” Though Rodriguez’s son did not learn this lesson from his father’s story, other children do.

Though I’ve never been involved with gang life, I learned about a life and struggles different than mine when I read Rodriguez’s book. I hope that my memoir will be helpful for other who have had my struggles and will help those who have not connect with a story different than their own.

In my twenties, I loved Annie Dillard’s Pilgrim at Tinker Creek, especially her reminiscence of a simple moment, patting a puppy, and being present. Dillard’s call to be present has guided many of my adult moments, and I have tried to integrate this call in my life and in my writing.

More recently, Patti Smith's Just Kids, her portrait of the young adult relationship between her and Robert Maplethorpe, the relationship of soulmates, made me cry out of my right eye, an eye that hasn’t otherwise teared in the four years since surgery.

I also loved Piper Kerman’s Orange is the New Black, Kerman’s story of a year in federal prison, and I hope that in my memoir I am able to tell stories that connect others to my experience and my vision in the way that she has connected with me.

I probably seemed a little crazy as I laughed my way through David Sedaris’s Me Talk Pretty One Day on a cross-country plane ride. Lots of people make me chuckle, but only David Sedaris makes me hee haw. When I was visiting a colleague’s Language Arts classroom one day, the students were reading a Sedaris essay, and I told them that David Sedaris and I had gone to first grade together (We went to E.C. Brooks Elementary School in Raleigh, North Carolina, but I don’t remember him and I doubt he remembers me.) I asked the knot of students that I was talking to, “Do you ever wonder who in your class might turn out to be famous?” One girl opened her eyes wide and whispered, “I think about that all the time.”

From teaching English, I believe that the best writing teachers are the writers who inspire us, and for these mentors I am thankful.

For Partners and Caregivers

My partner Ann has been a tremendous support for me. Her life has changed, as mine has, so I wondered what supports have been important to her. It was interesting to me to interview her about this because, though we have discussed these questions along the way, in the interview we both focused on her needs for a more extended time than we usually did, so I learned new things about her experiences. My interview with her follows:

What advice would you give partners of people with life-changing conditions like brain tumors?

Realize that you aren't the one with the brain tumor, that your part is to be supportive. The person with the health issue has to figure out how to deal with it. Just be supportive but know that you are not in charge.

Go to doctors' appointments with your partner. I went so that I could hear the news myself and so that I wouldn't have to ask you a lot of questions. I also went so that we would have two people listening and getting the information. And I went to be supportive. I wanted to hear the news first hand from the doctors and to meet the doctors.

Look for the good things you and your partner can share, instead of just trying to do things like you did before, even if it's really different from how you spent time before.

Give yourself time and permission to grieve what you've lost—or really how your life has changed. For me it was important to talk with a therapist I trusted.

It is a challenge for me to allow myself to do some things that my partner can't do anymore. That's hard for me. It's still hard for me to do things I know you would like to do and you can't do.

What's helped?

The thing that's been most helpful has been you because you've taken your tumors and disabilities on and decided to make the best of it, and you have encouraged me to go for a hike with someone or do other things you'd like to do.

Friends who have checked in with how you're doing also ask how I'm doing.

Working helps me. It's something I'm really interested in that takes me away from home responsibilities and gives me a different focus. That's always been good for me.

What's been hardest?

My partner moving from a full-time playmate to a part-time playmate and the fact that we can't do things together that we used to be able to do [have been hard.]"

The hardest thing is figuring out how to stay in the present, especially with the second tumor, and not get sunk by wondering what will happen in the future. But I think we've gotten closer going through this.