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, June 30, 2010

Summer #5: Who's cheering for the refs?

Summer #5: Last night we watched our Seattle Storm beat the San Antonio Silver Stars by over 20 points--without our superstar point guard Sue Bird, who was out with a back injury. We have great seats and generally have a great time. We sit by the woman in charge of security, but there's a man in the next section over who yells at the refs the whole game. I asked the woman who sits next to me if she could have him arrested, but she just laughed. I don't think he's from Texas as I don't hear his accent, but I think he's a Texas-wanna-be. He wears a straw cowboy hat and has a bit of a paunch and really shouts at the refs the whole time. I don't know how he finds so much to complain about. I prefer to cheer when someone does something amazing, which happens all the time as these women are amazing athletes.

When I was in college, I noticed a woman older than students looking a bit lost on campus. I went to Davidson, which is small, so if you're lost you've definitely not been there before. She said she was going to the basketball game, and since I was headed there as well I offered to walk her over. Attempting to be Southern friendly, I asked which team she would be cheering for. "Neither team," she said, "I'm dating one of the refs."

I'd never thought about refs having fans before as I suspect they tend to have a small cheering section and no cheerleaders. I cheered for the refs that night, too. Now hollering at the refs is one of my pet peeves. After all, refs are people, too, and all that negative energy must get to them.

Another pet peeve is being interrupted, something I posted in my classroom when I was teaching. This pet peeve  I learned to advertise to my teenager students because I didn't want to be grumpy all day. I once conducted a "Student-led Conference," a conference with one of my advisees, her mother and myself to discuss the student's academic progress and goals. This student struggled in school, and twice her mom upset her, and the student walked out of the conference, slamming the door behind her and pacing about to calm down. This was unusual, but not crazy. The unusual thing was that the mother would also get frustrated, walk out of the room, and slam the door. It was quite an afternoon. When all three of us were finally in our seats, I said something, and the mother interrupted me. Then, seeing the sign on the wall behind me about my pet peeve being to be interrupted, she apologized. But she didn't stop. That was kind of like Hamlet's uncle praying for forgiveness for killing the king, while at the same time keeping the wife and the crown. "My words fly up. My thoughts remain below. Words without deeds never to heaven go." I did not mention this parallel to my student's mother.

My third pet peeve is having people holler at me from another room. I feel if you are going to talk to someone, you should be able to see them. (Don't even ask about cell phones and texting.) As a general rule, I can't understand someone when they bellow from another room, and I've stopped trying. Now I just bellow back, "I can't hear you!" I'm curious to see how this works on my father at the beach in a few weeks. I'm guessing there will be no change in his behavior, but you never know.

So should we get to go to a Storm game together, cheer on the refs, don't interrupt me, and don't bellow at me from another section, and we'll have a grand time. Oh, you have rules, too? Mary

Tuesday, June 29, 2010

Summer #3: Tired and Fatigued

Summer #3: Sometimes when I mention that I'm struggling with fatigue, someone--trying to be sympathetic-- tells me they're tired, too. I appreciate the kindness. For me, though, feeling tired and being fatigued are two very different experiences.

I have generally been tired as a result of overdoing it: playing halfback in a soccer game, staying up late at a party, or working long hours at school. Being tired involves overdoing it with at least one muscle: my calves, my brain, my heart. In each case, I continue because I'm engaged, and there's an adreneline rush that gets me through until I crash. A good night's sleep, and I'm back to normal. In the long run, I have more energy for pushing myself to this point, for being so engaged.

Fatigue, in contrast, is in my bones more than in my muscles. There is no adrenaline rush. I will not be back to normal after a good night's sleep. I simply have no energy. I am depleted without any obvious reason to explain why.

With these tumors and their treatments, I have experienced physical and emotional fatigue, but my spirit remains strong. When I was younger and trying to figure out how I fit in the world, and then I I fit in my world as a lesbian, I experienced a spiritual fatigue that went much deeper.

I have been strugglilng with phenomenal physical fatigue these last two weeks, but these last two days I seem to have come to life. I'm not sure why.

When I'm fatigued, I tend (like most people) to quote Tennyson's refrain in "Marianna": "She said, 'I am aweary, aweary.'" I never complete the refrain, though the beat of the complete refrain captures the trudge of the emotion. "She said, 'I am aweary, aweary./ I would that I were dead.'" As hard as the recovery has been at times, and as weary as I have been, I am always experiencing the grace which is life. I know this is not true for some, and I hold a special place in my heart for those who are so weary that the grace of life no longer captivates them. If this is you, you are in my heart.

When I think of you, I think with hope of the ocotillo plant. I first met this desert plant in a desert museum walk years ago. The plant looked like a bunch of long, dead sticks, oddly planted in the desert sand. The sign in front of it read dramatically, "Dead or Alive?" In the distance, other ocotillo were green sticks, watered by the spring rains, and at these ocotillos' ends flamed the red flower that is such a miracle, an enthusiasm of life at the edge of what seemed to be dead. Alive is the answer to the museum sign's query.

I don't know if nature's metaphor helps you, but I will think of you and the ocotillo and pray for spring rains now.


Monday, June 28, 2010

Summer #3: Bobbleheads

Summer #3: Friday night at Seattle's professional women's basketball game, the first four thousand fans received Sue Bird bobbleheads. I have no idea how many people were there before six, but folks were lined up in snake-like formations that wound around and filled the area in front of Key Arena. It was a scene for sure.

In case you don't know who Sue Bird is: she's the point guard phenomenon who came to Seattle after graduating from UConn with an NCAA championship. She was the Storm's point guard the year we won the national title. She skips when she dribbles. In case you don't know what a bobblehead is, it's a ten inch tall figurine, usually a caricature of a sports figure. The head is on a spring, so it "bobbles." Just about everyone I know went early to make sure to collect one. Everyone, that is, except Ann and Pam, who think there are better things to do than wait in line for a bobblehead. (Really?) I got my bobblehead, of course. It's on our living room table in the front room where all visitors can touch its (her?) head to make it bobble.

I know some people who are bobbleheads. These are the people who nod their heads when they attend classes and lectures and such, a bit garishly enthusiastic. Sometimes this attribute takes me quite by surprise, as being a bobblehead isn't always consistent with the nodder's character, and each of the following examples is someone I admire for their candor, clear thinking and at times fiendish humor.

Take my friend Ms. Marion. She's a New Yorker, and she's generally consistently New York-like. She's a terrible driver, and she curses at other driver's for getting in her way. She generally doesn't stand up for an ovation at the theatre even if everyone else is and the actors are in elementary school. She rolls her eyes at those who stand for mediocrity. I was shocked to discover that she's a bobblehead. Years ago, we went to an English teacher's convention (some people's idea of hell) together. I happened into a presentation that she was also attending, so I observed her from afar. As the speaker talked, Marion nodded so hard I'll bet she got a cramp in her neck. She also raised her hand energetically to comment on, I do not remember, I think the brilliance of the presenter. Who would have guessed? To her defense, she commented that she only nods for people she likes or feels sorry for. It's been years since she's nodded for a school superintendent, for example.

And then there's Rose. Rose has taken training on having difficult conversations, but not because she shies away from the truth. Rose tells it like it is. She and I enrolled in a two-year seminary series through our church (she's Jewish now, so I guess it didn't take.) One of our teachers liked to ask questions and have people guess what he thought the answer was. I sat back. This is one game I would not play. To my astonishment, there was Rose, sitting forward, hand waving frenetically in the air, as she blurted out one guess after another: Ruth, no Naomi, no Sarah. Mary? And so on. I am still stunned to think of it. The result of too much education, I think.

And then there's Joanna. Yes, Joanna, you too are a bobblehead. Sorry to break the news to you in such a public forum. Joanna has her own style. She does one giant nod, generally with an intake of breath, and then, without looking down, writes aggressively on the paper in front of her. She never removes her eyes from the speaker. It's as if that one giant nod continues to tremble in the air, like a musical note sustained in space. Only it's creepier.

If you missed Sue, there will be two more bobblehead nights: Swin Cash and Lauren Jackson. Wouldn't it be great if there were a bobblehead of me? It could have a big scar in the back of its head, and its whole body could bobble when it walks. Now that would be a collectible that even Ann and Pam would wait in line for. Mary

Friday, June 25, 2010

Summer #2: Flash Dance

Summer #2: There are things I haven't told you, but now that we've gotten closer, I'm ready to open up. Last fall I started having hot flashes. What a bizarre experience. Always colder than anyone around me, I was getting ready to start a professional development seminar for about a hundred people when the school's principal asked how I was. "Hot."

I stripped down to the essentials, a cotton tank and my britches, and looked around. No one else seemed affected. I felt like a hot coal must feel. Or a radiator. Not a person near a radiator. A radiator. Heat smoked from every pore, and I discovered pores in my scalp that had never made themselves known before. I thought maybe I was having a heat stroke, but no one came to my aid. They all seemed unaware of the heat tsunami I was experiencing.

I tell you this so that you'll know for sure how much I suffered: piggy flu, pneumonia, radiation for a brain tumor, and hot flashes. A friend staying with us called to say she had head lice while she was here, but we didn't get them. I was glad, though it would have made a good story.

I have not experienced dramatic emotional reactions, yet, though perhaps that's to come. When Ann, who is remarkably calm and centered, was going through this, she kicked a hole in the wall. I was in the kitchen, and I could hear her upstairs slamming doors and drawers more and more assertively. Finally she yelled down, "Honey," (she wasn't really thinking honey), "Do you know where my blue shirt is?" I hollared that I didn't, and she sighed dramatically. I heard her slamming things around again, this time in my closet. I knew she thought I'd hidden her blue shirt among my clothes. Then everything got quiet.

Ann came down in her pink shirt and stood quietly by me until I looked at her and asked, "Did you find it?" She responded, "I kicked a hole in the wall." It was like a child confessing having stolen candy from the grocery store. I laughed, and we went upstairs to survey the damage: yep,a size ten and a half hole in the wall.

The next day Ann fixed the hole and found the shirt. In her own closet. This is one of my favorite stories about her. When I asked if it would be okay to write about it for the blog,she said, "Why not. You've told just about everyone we know."

A few years ago, before my brain tumors, we went with our friend Ellen S. to see Menopause the Musical. There were seven men in the audience (I counted). I seemed to be ther only person under fifty years of age. The audience howled with laughter as the women on stage sang, fanned themselves,  went to the bathroom every few minutes, and had temper tantrums. I didn't laugh. I was terrified.

We're in for a cool, damp summer here in the Northwest, but I'm guessing I'll be plenty warm. Mary

Thursday, June 24, 2010

Summer! #1: Oh, The Places You'll Go!

Summer #1: I hope this summer will be one of healing and rejuvenation. I just returned from our local park where I was "running" (really prancing) up and down the field when a large dog barked joyfully from the hill. I stopped. "He's friendly," his owner yelled. This was my concern. A large, friendly dog pouncing on me and licking my face could mean nastiness (I hate having my face licked...please note it) or more surgery. I came home and left that large, on-leash field to that foolish man and his friendly dog. I'll try again tomorrow (unless it's raining, which it probably will be).

Two summers before my surgery Ann and I travelled to Tanzania on safari with our friends Pam and Kari and then around Ethiopia with our friend Rita. The summer before my surgery, we rafted down the Colorado River in the Grand Canyon. Both were fabulous trips and I'm so glad we did them when we did. If you haven't done either, I'd suggest you go. Soon. Take our friends. They're great fun. We've been on travel hiatus for the last few years and hope to travel again before too long, but I'm sure we'll travel much differently.

Other places you should go? If you love white sands, blue waters, colorful fish, and winter sun go to Maui, Hawaii (we're hoping to go see some friends who live there next Christmas); for mountain flowers and  stunning mountain hikes: Paradise, Mt. Rainier; if you love jungles, colorful birds and monkeys, go to Costa Rica and down the Amazon in Ecuador. If you love wide open expanses, trailless mountains and valleys,  and the adrenaline rush of big animals in the wild, Denali, Alaska's your destination; for biking and kayaking: Orcas Island, Washington; for amazing color, a mix of Catholicism and Paganism and ancient pyramids: Guatemala. for resilient people creating hope in a beautiful land haunted by Cold War ghosts: El Salvador; for bizzarly beautiful red rock formations: Sedona, Arizona; for what used to be a small artist town on Mexico's West Coast (though I think now, it's been taken over by those places that require wristbands): Bucerias, Mexico. That's a good start.

Where do I hope to go? Anywhere that is both culturally and environmentally new to me where I can also manage the bathroom facilities: Vietnam, Cuba, Ecuador's Galapagos Islands, Greece, Egypt, Bryce Canyon National Park. New Zealand and/or Australia. That would be a start.

Any recommendations? (Susan, you of a different continent each month, I'm especially curious to hear what you have to say. And May...you've been traveling for a year or so now?)  Mary

Wednesday, June 23, 2010

NL #44: Waxing Nostalgic

NL #44: This is the time of year when people in my profession wax nostalgic: we say goodbye to students we've come to love and remember students from past years who have been such grace to us. I blieve ths students below are students who have visited my blog. I taught each of them when they were in high school. They're all out of college now.

Monday, my colleague Joanna helped me take my artwork down from our cozy cubicle since I'll be roosting in other places next year. When she took down a bright yellow and blue plaster of paris sun, she noticed the note from Tressa on the back and the graduation year, 1995, the same year that Joanna graduated. Wow. Joanna said to me, "I guess you aren't in touch with her anymore," and I was pleased to say that Tressa and I are in touch, sorry to say that Tressa too is struggling with illness, but glad to have her in my life, then as now. If I remember correctly, I taught Tressa for second semester freshman English, sophomore English, beginning journalism, advanced journalism, A.P. Literature and then, school newspaper editor. And she was my T.A. I learned at least as much from her as she did from me. Mostly, I think we had fun learning together. She always told me if I had stuff in my teeth after lunch.

Sara was in a lot of those classes, too. She's a calming, thoughtful presence. For a while I heard she worked for Vogue and rode a motorcycle.  I've seen her recently and she's calm and centered. Now she's a nurse, which seems just right to me. I hope she's not on the motorcycle anymore--especially since I'm so aware of the troubles of head injury--but I don't know.

Brett was in that same sophomore English class, A.P. English, and journalism. He was (and is, I'm sure) dang smart. I remember the day we were discussing Poe's "Annabel Lee" in AP Lit and Brett understood the bizarreness of the narrator's attachment before his friend Kenny did, "Hah!" He loved music and Jimi Hendrix and did his senior project studying music. His presentation room was packed with friends who admired his passion. He's been in Austria with his wife (if you've known a lot of adolescent boys, you know that imagining that boy with a wife is a joy in itself). Anyway, he and his wife have been in Austria now for six years, but I'll look forward to seeing him when he returns to the U.S. this summer.

Herb is the most recent of this bunch. In high school, everything he did was funny. He could pick up a pencil in a funny way. I tried not to laugh, but he would just do something else, like pick up a book, to make me--nd his peers laugh. He was also, and still is, a profound artist and thinker. He, like I, loves the chapter "The Present" from Annie Dillard's Pilgrim at Tinker Creek.

This morning, my previous student Chancey, in town from Minnesota, visited. As a junior, Chancey worked a full year revising her Scarlett Letter essay. Stunning persistence. My other sharpest memory of her as a studetnt is the day she arrived at school late, laughing that she spun her car in the snow and that the car was still in the ditch. She's not easily rattled, it seems. She's now a high school English teacher in a charter school and from the way she talks about her students--with humor and affection--I suspect she's fabulous.

From time to time I run into Eldin on Capitol Hill. A sophomore in my English class, he was as angry and cynical a student as I've ever met. I tried to arrange social services for him, but it was clear he was in for a rough ride. About ten years ago, I saw him on Broadway, begging for money for his twenty-first birthday toke. Three years later, I saw him again. This time he recognized me but still seemed a little rough. I've seen him on Broadway twice since: enrolled in college, clean, and saying he was happy. He reminds me that the students who don't get it together in high school have a life ahead of them and that still there is hope.

I have lost touch with some that I wonder about, and I wonder how they are faring as they grow into adults.

I figure I've taught about 2000 teenagers, and each of them is such a wonder. I could not tell you every name, but I could probably tell you something about each as a student: an engaging discussion, a well-written essay, improvement over time, humor, kindness.... Every adult I have known (with two significant exceptions) who has changed careers to go into teaching has balked at the work load and the difficulty and returned to the world of higher pay, but for those of us who love it, there's no more joyful place to be.


Tuesday, June 22, 2010

NL #43: For Health-care Professionals

NL #43: Today is the fourth in a three-part series written for those with life-changing illnesses and the people who love them.

A lot of skilled people take care of me. I have had--and in most cases still have--many folks looking out for me: a primary care doctor, three neurology surgeons, one radiation/oncologist, one neuro-oncologist, one oncology nurse practitioner, one dentist, one TMJ specialist, one naturopath, one cranio-sacral specialist, seven physical therapists, one therapist, two masseuses (massae?), five radiation technicians, one eye surgeon, one ophthamologist, one acupuncturist, one chiropractor, a  lot of nurses and support staff, and a lot of folks whom I no longer know by name. That's a lot of health care.

I am lucky to have the care of so many fine people. For the most part, they are professional and kind. They listen to me. They treat me like a smart person with a bad disease. They are both honest and hopeful.

When my doctor first told me about my first tumor, she said that I would need to have surgery quickly and that I would like the neurosurgeon assigned to my case. She called him a "Renaissance man." Hi name, Dr. Rapport, aptly described his character. A church friend who is a doctor who knows him, told the choir, "Mary has a kick-ass surgeon." She told me the story of the time when she, her husband, and Dr. Rapport attended a protest about the Trident Sub. Dr. Rapport, in his blue jeans and pony tail, was handing out leaflets when a woman, disgusted, said to him, "Why don't you get a job?" He responded, "I have a job." She rolled her eyes, "Yeah, what kind of job?" And he, "Well, ma'am, I'm a brain surgeon." Others I talked with confirmed his stregths as a surgeon and a person. Before I even met him, I believed in him as a person with good hands and a good spirit, something important to me. As my surgeon, he was honest about the seriousness of the tumor, hopeful about my outcome, and respectful of me, my partner Ann, and my parents. I felt like he cared about me. I still do.

One of my early physical therapists, Irina, has been another gift. In the year or so we worked together, she taught me to walk again. She was encouraging and challenging. Whereas an earlier therapist had me practicing standing on one foot, she had me kicking soccer balls and dribbling basketballs. She knew her stuff. She was helpful and hopeful. She was fun. She even convinced me to take Salsa lessons, which would have been a challenge for me before my tumor. When we did a three count turn, I took about sixteen counts.

I would like doctors in training to learn from these health-care professionals, to learn from their respectfulness, their compassion, and their spirit.


Monday, June 21, 2010

NL #43: The Courage to Learn

NL #43: I am trying to imagine what famous people might say if they read my book. Here are some guesses:

Sarah Palin: "I like reading this book on my front porch, so that I can look up between entries to monitor the situation in Russia."

Ellen Degeneres: "Our next guest, Mary E., is a talented writer and inspiring adventurer. We have a lot in common. We both have blue eyes. We're both lesbians and came out in our thirties. We both aim for kind humor. Though we are so similar, you can tell us apart. Mary had two brain tumors, and I haven't even had one. Mary is a thousand-aire and I am a gazillion-aire. Mary walks with a cane and I dance up stairs. Please welcome..."

Martha and Emily (former students, former Dixie Chicks, current Courtyard Hounds):
Emily: "I think I'll send this book back to Mary with  suggestions for revision just like she always did for my essays. Then, after she revises it, I'll send her more suggestions."
Martha: "I don't really remember writing essays for her class. I just remember the time I fell asleep in the library and missed her class. She wasn't mad. She was more concerned about my missing my sleep than about my missing Chaucer."

Shaggy and Scooby-Doo:
Shaggy: "Will you read this book for one Scooby Snack?"
Scooby-Doo: "Huh-uh."
Shaggy: "Will you read this book for two Scooby Snacks?"
Scooby-Doo: "Huh-uh."
Shaggy: ""Will you read this book for three Scooby Snacks?"
Scooby-Doo: "Uhhh. Oh ay."

Obama, "Now let's be clear about this..."

David Sedaris, "I remember what a great kick-ball player Mary was in the first grade, but I didn't realilze she too has an eccentric family. I think I'll start writing about her family."

JFK: "Ask not what Mary can do for you. Ask what you can do for Mary."

Oscar the Grouch: "I love trash."

Willie Nelson, "This story reminds me of a woman with a tumor whom I once left. She's always on my mind. I wonder if she remembers me. I think I'll write a song."

Sue Bird: "I'll bet she could have beat me in H-O-R-S-E if she didn't have that tumor."

Parker Palmer: "She has, not just the courage to teach, but also the courage to learn."


Sunday, June 20, 2010

NL #42: My Dad

NL #42: "I could tell he's your dad," said my freshman student Kerri when my father came to visit my classes in one of my first year's of teaching. I asked why, expecting her to say we look alike, which lots of people say so I guess must be true. Instead, she said, "He laughs at your corny jokes."

We do have similar senses of humor. We both find repetition over the years especially amusing. We also like to pull one another's chain, though he often gets in trouble with mom when she thinks I'm mad, so I've had the advantage over the last few years. During the Sweet Sixteen NCAA Men's Basketball tournament this year, I called Dad in the final minute of a close Duke game and he hung up on me. Mom was worried I was mad. The next game, he called me, but I got the upper hand the following nail biter. Neither of us called in the final game. With only seconds to go, it wasn't clear who would win, and no North Carolina basketball fan dabbles in such dangerous territory.

We also both love ice-cream, though he can eat lesser ice-cream with chocolate sauce on top and I insist on high quality stuff. Years ago, when he and Mom visited Seattle, we had ice-cream for lunch. That was a good day.

There's more: we both like words and exactitude in language. We both work for children's causes: I work in education and he works in the medical field and the political field for children's health issues. Both of us value integrity.

We both try to understand perspectives different than our own. When I lived in Dallas, I watched tele-evangelists from time to time to try to understand the attraction. Now, when I can stand it, I listen to talk radio. When Mom and Dad and I lived in Wichita Falls, Texas (I was too young to remember it), we attended a conservative church and Dad sought from that point forward always to attend a church more liberal than he is. I respect that.

Both us can appear to be listening when we are not. If you're talking with him and he starts scratching at the thin part on the middle of his head, he's not listening. Ann used to get frustrated with me when we had discussed something that I later did not remember. Now she says to me, "Okay, what did we just say?"

Another similarity is that we can have strong opinions. Sometimes, this strength leads to arguments, often about gender or politics. He seldom knows how we got into an argument as he hasn't learned to recognize the land mines he seems to lay for himself.

We both love to travel. Before my tumors, we went on an Elder Hostel trip to Alaska together. At first, I felt I received a chilly reception, but once the group learned that I was his daughter and not his trophy wife, the group embraced me and him. We shared a room for over two weeks and experienced no tension. We were proud of ourselves.

Throughout this tumor battle, Dad has been absolutely supportive. He has come to Seattle to meet with doctors, sat by my hospital bed for hours, and even learned to scoop up his own ice-cream so that Ann amd Mom could take care of me.

On this father's day as on all days, Dad, I feel so grateful that you are in my life. I love you. Mary

Friday, June 18, 2010

NL #42: Words, words, words.

NL #42: When I went into brain surgery, my biggest fear was not that I would die. My biggest fear was that I would lose my sense of myself. Fortunately, I seem to have sustained little cognitive disruption. I do from time to time notice struggles, though. I seem unable, for example, to maintain and keep up with a calendar, so I'm always having to call my various health care providers to ask them when my appointment is. Once, I called one woman three times in a row. She maintained her sense of humor, but I'm not sure how much longer that might have lasted.

Sometimes I can't find words that I don't use especially often. As a logophile, this is a new experience for me, and it can be frustrating. I remember where and when I learned certian favorite words like other people remember their favorite song from seventh grade. When I was in junior high school, my aunt Myra joined us for Thanksgiving dinner. She marvelled at the words "gauche" and "panache" which she had just learned. In eighth grade my favorite word was "dappled" and in ninth grade it was "mnemonic." As a new teacher my favorite was "penultimate" because it came in handy so often and later "detritus" because it, too, came in handy. As a college junior in Ireland, my favorite word was "conundrum." I think I had known it before, but I loved it when my taxi driver entered an existential wondering and kept craning his head to say to me, "It's a conundrum." As a teacher in an urban public school, I've loved "Snaps!"

A few weeks ago, I couldn't remember the word for "fire extinguisher," so I had to call it "that red thing we sprayed when I set the kitchen on fire" (by mistake. another story. It was a long time ago.) I sounded like David Sedaris and his international French  class as they tried to explain their religious traditions to one another: "The Jesus boy. He good."

Last week, sending a colleague an email, I couldn't remember the word "split," so I rearranged the sentence and used "bifurcation." Why can I remember "bifurcation" and I can't remember "split"? Should be interesting trying to order a banana bifurcation at the Baskin Robbins in North Carolina. I remember "Baskin Robbins."

Joan. Sally. No...Mary

Wednesday, June 16, 2010

NL #40: Don't write about this on your blog.

NL #40: From time to time a friend says to me, with some urgency, "Don't write about this in your blog." I always hope to be respectful of all of my friends and relatives, and I don't always have good sense, so I appreciate them telling me what not to include. Mostly, these stories are erased from my brain, but I remember a few. The names of the innocent have been withheld.

During church one day, a friend who is losing hair in that way that men in their fifties often do, got up to give an announcement. Since I have also experienced hair loss, all I could think about was how cold he must be. When I said to Ann, "I'll bet he's cold," she didn't understand the connection, but as soon as I asked him if he was cold, he understood why I was asking. He responded, "Don't write about this in your blog." We understand each other and I've found a new sympathy for men who are losing their hair.

Last night, in talking with a friend who was suffering from back pain, she said, "Being on my back all day is boring. Don't write that in your blog." Our conversation moved from pain to old age, and she noted that the older she gets, the more she realizes how much she does not know: "I keep thinking any day, someone's going to show up at my door and ask me to return my diploma. Then the next week, someone else will show up to ask for another diploma. I guess I'll know I'm in trouble when someone asks for my birth certificate."

A few years ago we were at our friends John and Jerry's home for dinner with our friends Pam and Kari. John and Jerry's driveway is difficult to navigate, so Jerry offered to turn the car around. As he did, he noticed Pam with her scooter (really a motorcycle) in the rearview mirror, and he hit the gas in order to scare her. As we came close, Pam said, "I peed a little." She didn't tell me not to write that in my blog though come to think of it that was before I was writing a blog. Thank heavens I still have a memory.

In case you're wondering, there are things I choose not to share. Don't you wonder what they are? Mary

Tuesday, June 15, 2010

NL #41: Keep true to the dreams of thy youth.

NL #41: Today, seniors at one high school where I work showed a slide show celebrating one another. The quotation that kept being projected was Friedrich Schiller's, "Keep true to the dreams of thy youth." Such pre-graduation celebrations, filled with the hope of community, accomplishment, and new beginnings, lift us all.

I witnessed many of the students whom I taught in my last year of teaching receive awards, and then I got to present World Citizen Scholarships to four Somali girls. They will each use the scholarships to attend community colleges. These girls, Amino, Fatima, Miski and Sucdi are determined and bold. As we left the assembly, one girl stopped to warn her history teacher that she would be coming to see him during fourth period to find out about her grade. She would not accept, she said, a D or a C. (I think it was understood that an F was out of the question.)

After their graduation ceremony, Amino introduced me to her mother, who does not speak English. She gave me big hug and then kept stroking my arm like one might pet a long-haired cat. I understood. She has been through a lot and has feared for her children and is saying thank you, to me and to the spirit of the world that nurtures them.

Each of these graduates came to high school speaking little or no English and is now graduating. They have learned to speak English and to navigate the public school system. They manage one language and culture at home and another at school. They have completed required coursework, including completion of core classes like A.P. Literature. They certainly know persistence and self-advocacy, which is good because they still have considerable obstacles to face:  cultural, familial, financial ....

At another school where I work, my colleague Todd told me about the moments at the awards assembly that made him cry. One student with Asberger's, selected as a senior speaker by his classmates, got up to talk and could not. He wept. Students gave him a rousing ovation and one brought him a Kleenex. He sat for a while with two teachers, then stood again to deliver his speech, this time successfully. Eleven hundred high school students, their teachers and parents, were absolutely silent as they listened to what he had to say. In another absolutely silent moment,peers listened to the story of a student who received the ELL award. She came to this high school is 2005, speaking no English and raising her son. Now fluent, she's graduating tomorrow. Her peers exploded in applause for the gutsiness of her success.

In contrast, I encountered two young men who were walking the halls during the assembly. One listened to his ipod, drowning out the world around him. The other stopped, read a stenciled sign on the wall aloud: "If you DREAM it, you can DO it.--Walt Disney" and said, in almost a whisper, to the sign, "Tell that to the millions of crack kids who have dreams."

Stories of hope are so inspiring to me because I also see the darker stories that may be more prevalent. I want every child to experience the hope that the students who have overcome so many obstacles have inspired. Students like these continue to inspire me in facing my own obstacles. At our wedding last year, guests contributed to the World Citizen scholarship, one that we plan to continue. What a gift of hope this is, to me and to them. Please let me know if you'd like to contribute (contributions are tax-deductible.)


Monday, June 14, 2010

NL #40: Like Fingernails

NL #40: I've noticed that, when we see one another, those of us with serious illness are somewhat like dogs meeting one another in a park. No, I don't mean we sniff one another's butts, but we are cheerfully curious about one another and want to know the other's story. It's like a club with a rough initiation.

Friday, while I awaiting my massage, another woman--apparently healthy--said to me, "Excuse me, this is a personal question. Do you have MS?" I explained that no, I have had brain tumors. "Oh," said Danielle, "I've just been diagnosed with MS." She smiled. It's a kind of introduction.

We shared stories about how our illnesses were discovered. Danielle was in a chronic pain study at the University of Washington, and when they did an MRI they found the MS. We also shared stories about early symptoms: apparently many MS symptoms are much like brain tumor symptoms. We also talked about how people react to us. Danielle said that yesterday someone told her she had made a contract with God before she was born to experience this illness in this life. Another person told her that she must have "something in her" that fostered the disease. A couple of her closest friends, she said, avoid her as if her MS is contagious.

I've heard enough similar stories from others with life-changing illness that I suspect I am the exception rather than the rule: no one has suggested that God or I plannned this illness or that I deserve it. My friends and family have gathered around me and Ann in a web of support.

I think of my tumors more like fingernails than as some deserved blight. I got fingernails. They came with me when I was born. I really don't know why. I also got tumors, one of which was born with me. I don't know why.

Thanks for being the friends you are. If you believe such nonsense as Danielle has encountered, at least you're keeping it to yourself. You're the best. Mary

Friday, June 11, 2010

NL #39: Double Trouble

NL #39: Double vision was the key to the discovery of my brain tumor. For about a year, I saw my doctor and opthamologists about headaches, slight balance issues, and vision difficulties. I followed their advice: got glasses (all reminded me: you are getting older) and drank more and more water.

Then I started seeing double while biking, and finally, intermittently, while teaching (very disconcerting to suddenly have 25 sets of identical freshmen twins in the room.) When I told my students about the tumor and the double vision, they didn't really understand the seriousness of the tumor, but they were fascinated by my double vision. Roger and Danny constantly asked me, "How many of me do you see now?" before talking about their writing or their reading.

Immediately following surgery, I don't think I saw double. I did start seeing at 90 degrees. In the Intensive Care Unit, I thought my bed was at a 90 degree angle. This seemed to me a bad design. I was impressed I didn't fall out, which I attributed to gripping the bed sides. I thought I must be very strong after surgery. This seemed like a good sign.

When my primary care doctor, Dr. M, came to visit me in recovery, my parents escorted her into the room. I heard my mom say, "Look who's here!" and I turned to see my doctor, flanked by my parents, apparently lying on the floor. This simply would not do.

Doctors use a measure called a diopter (how many meters--that can't be right--maybe centimeters?) things are off at one meter away. They generally recommend surgery when the eyes are 20 diopters off. After brain surgery and before eye surgeries, mine were about 70 diopters off. That's a lot.

After eye surgeries, my eyes were off about eight diopters each. (For those of you who struggle with math, that makes 16 diopters.) Prism glasses can correct vision up to about 18 diopters, so I've since been wearing prism glasses for the last two years. Radiation exacerbated the eyes again, and so for now I'm closing one eye most of the time to function. I'm hoping that this will be temporary.

If you're wondering what this experience of double vision is like, it's kind of like living in the Blair Witch Project. It's pretty  cool at first, but after a while it's just nauseating.

See you (or two of you) Monday! Mary

Thursday, June 10, 2010

NL #38: The Best Thing about Teaching

NL #38: Nine days left of school in the Highline School District. The countdown. Everybody's aware that summer is just around the corner, but it's raining, so we in the Northwest continue on as if it's winter. The students aren't even very antsy. The teachers are more jumpy than the students, but they're hanging in there, too.

It's been quite a year. I began working full time, some time in three different schools and some time at the district office. What with piggy flu, pneumonia, a brain tumor, radiation and now tmj, I had to cut back. Now I've increased my time to about 70 percent..

Next year I will work full time again. I will probably split my time between two schools, continuing at one of my current schools and picking up at a small school. There's lots of talk about next year with teachers, administration and district work right now. Also lots of planning for summer work. My dad used to love the joke, "What are the best three things about teaching? June, July and August." This year, school gets out June 23; I have a meeting June 25; I start back to work the second week of August. Make that: What's the best thing about teaching? July.

Actually, I do love my work in the schools. Even with all my illness this year, I have witnessed such growth among teachers and students. Every year there are things we teachers wish we had done better. And every year, there are miracles.

We work hard and we don't get paid a whole lot (though enough for me anyway), but we get to participate in a cycle of hope every year.

So really, the amazing thing to me right now is that we're in the countdown but no one seems to be counting down. No one's dazed, it seems, who wasn't already. Oh, except maybe me, but then again I'm celebrating miracles. Mary

Wednesday, June 9, 2010

NL #37: The Keys to Understanding Southerners

NL #37: Some poeple think that the key to understanding Southerners is understanding the Civil War. That's true, but also understanding hyperbole, vocabulary (like y'all) and cultural phenomena (like grits) are keys to understanding Southerners.

Here are the main things you need to understand about the Civil War: 1) It is called The War Between the States or The War of Northern Aggression 2) It is not in the past. It is ongoing. When my grandmother M. used to say, "That wind came through here like Sherman marched through Georgia," no one would ask, "Sherman who?" That's like asking, "Michael Jordan who?"

When I was teaching a US history class a few years back, my original teaching partner had a nervous breakdown (no, I do not think I drove her to it), and my colleague Don took her place. Because it was November and the class was still in Plymouth, Don and I agreed that we needed to decide what to teach and what to skip. "Let's skip the Civil War," he suggested. "It's not that important." Don grew up in the Northwest. Raised in the South, I nearly dropped my teeth.

About language, an arena in which Southerners excel, the word, "y'all" is probably Southerners' most significant contribution to American English. "You guys" leaves out half of the population and the Spanish "ustedes" is too formal. "Y'all" is the word. By the way, it's plural. You don't say "y'all" to one person.

The elegance of hyperbole may be the Southern storytellers' greatest contribution to literature. Ann is from Texas, not the South, and I have finally taught her not to correct me when I say something like,"That meeting took twelve hours." The point is the experiential truth, not the fact of the meeting's length. That meeting (pretty much any meeting) seemed like it took twelve hours. My friend Marion, from New York, excels here as well. Marion also loves musicals, so in her soul I suspect she is part gay Southerner.

Of course, we use hyperbole all the time to talk about our misery: I'm starving. I'm dying. I can't take another step. Sometimes I wonder how people who have experienced starvation, the threat of death, and such exhausion that they cannot take another step hear these expressions. I know when people say (and they often do), "My head is killing me," I want to say, "Really?"

In terms of Southern cultural phenomena, I can't really explain grits. You have to eat them. Eat them before they dry into a plastic pancake. That's my tip. No Southerner allows food to stay on the plate long enough to get cold like that. Also, don't put sugar in them. Texans may do that, but Southerners do not.

See y'all tomorry. Mary

Tuesday, June 8, 2010

NL #36: My Teachers

NL #36: I have been lucky to have lots of teachers who believed in me and were passionate about learning--mine and theirs--through the years. Among this strong set of teachers have been four whom I believed most cared for me and my learning and connected to who I was and what I needed. All of these teachers inspire my own teaching and my own current work with teachers and students.

My fourth grade teacher, Martha Anne Shuler, had died platinum gold hair that didn't quite match her dark eyebrows. She could raise one eyebrow. (When she raised it at me, I didn't need her to raise her voice. I knew I was being bad and should shape up immendiately.) When I first started teaching, some of my students drew a giant picture of the "evil eye" on the blackboard. Apparently, I gave them the silent and deadly "evil eye" when they were being bad. I'm sure I was channeling Ms. Shuler. She drove a yellow Corvette. As a new teacher, I drove a Mustang convertible--my own version of a Corvette. Now I drive a Honda. And my hair, well, it just stays auburnish. Ms. Shuler and I continued to keep in touch until her death from cancer when I was in my first teaching job. I still think of the way she held us up to the monkey bars to see if we could hold on for 30 seconds, because a bunch of people had died in a church fire when they couldn't hold their own weight up for 30 seconds. We would live, she told us. I also remember the invisible way that she somehow helped me adjust to a new school. I still don't know how she did that, but I learned that new places were interesting, not to be feared: a lesson I'm still learning.

In college, my professor Cynthia Lewis, inspired me to deeper understanding of and joy in literature--and to compassion for myself. She believed in me when I didn't. Cynthia had long dark hair and was considerably younger than many of our professors. She was our eating club's advisor, and I remember a drunk freshman, mistaking her for an upperclass beauty, hitting on her. On the rare times when I walked by her office door instead of knocking on it, I could hear her inside howling with laughter at something she was reading. She loved us, and she loved the literature she taught. Before the dreaded Senior Symposium, a course required by all English majors and taught in my year by her, she gathered us together to ask us how we would best learn, and then she used our ideas. At that meeting, I remember, she mentioned that while we would each have different reading lists according to our interests, of course there would be some literature that all English majors should have read: Melville's Moby Dick, for instance. My friend Forrest and I exchanged glances. I mouthed, "Have you read that?" and he responded, silently, "No." I read Moby Dick that summer before my senior year. It's still one of my favorite books. Cynthia's dual passion, for her students and for her subject, continues to inspire me. I want to be like that.

As a teacher, students and adults have been my teachers, but one coach and one student have had the most impact on me. Jenn McDermott, my coach, took me on when, after fifteen years of thinking I was a decent teacher, I struggled more in a new context than I had expected. Jenn helped me to move to a more student-centered and process-oriented classroom. I still remember the first week of school, when Jenn was in my class and my freshmen were so excited about their writing that they had an impromptu poetry slam. As students jumped up to share their work and cheered one another on, Jenn and I sat at the back, celebrating their writing and their enthusiasm. At one point, Jenn leaned over and said to me, "Congratulations,Mary." Such genuine growth and sharing were the goals. No test ever matched it.

Students along the way may have been my greatest inspiration. Most recently, my student Yessica and her mentor, an older student named Yadira, have taught me the most about students who are turning from disillusion to engagement. In her first week or so as a freshman in my class, Yessica often missed class, though when she was there she seemed focused. Concerned, I called her mom--who speaks primarily Spanish. Her mom came right to the school, and I met mother and daughter in the front office. In speaking with her mom, I blanked on the Spanish word for "worried" and asked Yessica how to say it. "I don't speak Spanish," she said. Of course. She was mad. Over the year, she grew into a dedicated student who inspired me and others. From time to time I would communicate with Yadira when I was concerned that Yessica was falling away again. Yadira counselled me to be patient, that it would take time for Yessica to change her life. Yesterday, Yessica, now a graduating senior, told me that she received a full scholarship to the University of Washington. That kind of hope inspires me.

I'm not really a sit down and shut up kind of teacher, or student. You? Mary

Monday, June 7, 2010

NL #35: Our Changing Blog

NL #35: I have noticed a blog change that you may be only partially aware of, so I thought I'd fill you in. As some of you have noted, comments on the blog have decreased since I moved to a new platform. In that same time, more of you have contacted me directly, in person or via email, to tell me of your own struggles and the struggles of those close to you. Each of you has shared that the blog has been helpful to you in this time and many have mentioned that you have shared the blog--or particular entries--with others.

The community of commenters here is and has been a real source of support for me. Hearing from those of you who are facing changes in your own lives and who are finding this blog a source of support for you means the world to me, too. Having you share your stories with me--in either venue--helps me to feel a part of community and not so alone in this struggle.

Without your comments, on the site or in more personal communication, I can feel a bit like Who-ville praying for a Horton: Is anybody out there?

Thanks for being here. Mary

NL #34: Will you still have ears?

NL #34: When Ann's colleague Thomas told her two year-old daugher India that Thomas would be getting her hair dyed a different color, but she would still be the same person, India adopted her mother's serious tone, thought about it, and asked, "Will you still have ears?"

One of the fun things about teaching--and probably about parenting--is watching children think and just trying to imagine what's going on in their heads when they meet new ideas. When Ann, frustrated with one of her freshman students who was surfing the internet instead of working on his math, told him she was bending over backwards to help him learn, he looked disturbed and whispered to himself, increduously, "Bending over backwards?"

After my surgery, I did an administrative internship in a high school and took a zero-gravity chair into my office so that I could take a nap there when I needed to. The one day I did take a nap, upperclassmen were leading tours of the new school for freshmen. I heard a group outside my door, then a series of teenage boy voices. "She is out" and "She is totally out." I opened an eye to see three stacked heads at the rectangular window in my door. Note to self: cover that little window in the future. I pretended to keep sleeping, but it was hard not to laugh.

When my niece Isabella was two years old and  her younger brother Jack was a one year-old, Isabella saw a picture of herself as a baby and said, "That's Jack." My sister Jenn replied, "No, that's you." Isabella thought about this for a while and then said, "That's amazing." That is amazing. It's good to be reminded.

Ann and I got married last summer and our nieces and nephews were all part of the wedding. A month or so before the wedding,  my niece Lucie was sitting in the back seat of a car with her friend and told her friend, "My aunt Mary and my aunt Ann are getting married, and they're both girls." Her friend gasped: "They're going to have a lot of babies."

If you're a young parent, please start writing these gems down. Such wisdom might be helpful to our congress. They're desperate for the wisdom of young minds.


Friday, June 4, 2010

NL #33: Friends of partners and caregivers

NL #33: Today is the third in a series of three intended especially for those facing life-changing disease and the people who love them. One of the partners in my online support group, Marcia Hale, whose husband John passed two months ago, shared these thoughts about advice for friends of partners:

Don't stop trying to get the partner to go out.
Offer to make a meal and bring it over and share it with them at their house if they can't get out.
Don't forget to ask the caregiver how they are.
Offer to pick up stuff for them when you are going to the store.
If you do not know what to say, then how about just, "Hi."
Remember, this disease is not contagious.
If they have a dog offer to take it for a walk: you have no idea how that would help.

As the person with the tumors, I thank everyone who supports both Ann and me. Ann's mental health is important to me (and not just because she's the one doing all the chores right now.)

And a few thoughts from me for the neighbors:

Consider the ramifications of your decisions on the healing for someone who has been in the hospital. If you live next door to someone who just returned home from brain surgery, for example, don't throw loud parties, purchase new puppies to leave in the yard or start a major remodelling project. All that thumping and yipping and hammering gives a person a headache.

If the person has disabilities, leave parking that's easily accessible to them available for them to use. I've been asking the city for one of those disabled parking spaces now for two years. Fortunately, the neighbors are generous about leaving it for me anyway. Also, keeping sidewalks clean and clear of brambles helps on those early walks. (Not everyone has a mom like I do who walks around the block with her sheers.)

Thoughtful gestures like cut flowers on the front porch and fresh eggs from your hens mean a lot.


Thursday, June 3, 2010

NL #33: For Partners and Caregivers

NL #33: Today is the second in a three-part series written for those with life-changing illnesses and the people who love them. As 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, we both focused on her needs for a more extended time, 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 was 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 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."
"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."

As the person with the brain tumors, I have leaned heavily on Ann, and I think maybe we've leaned on each other. I feel so blessed. Mary

Wednesday, June 2, 2010

NL #32: For you when your life is changing

NL #32: Today is the first of a three-part series for those currently or newly facing life-changing disease in themselves or those who love them. Today's focus will be on the things and people who are helping me in this time. Tomorrow's focus will be on partners and caregivers. Day the third I'll focus on friends of those with illnesses and friends of their caregivers.

Since I stared radiation, an uncle has undergone surgery for cancer, a friend has learned she has a tumor in her eye, and two friends have shared debilitating mental health struggles. I hope that this writing may help them and others like them just in the sharing. My intent is to share my experience, not to provide advice. Each of us takes our own journey, and I won't pretend to know someone else's situation or what's best for them. It helps me to hear others' stories, so this is my story.

1) My partner Ann went with me to appointments so that she would know what was going on and could help me follow difficult news and to makedifficult decisions. We have a notebook in which she takes notes at every appointment. The two times she did not join me (because we thought the appointments weren't going to be that newsy) were the two times I've had the most difficulty afterwards. In one, I learned that I had had a "small stroke" and in the second I had an MRI (where I was in a long tube by myself for a good long time) to learn whether or not the brain tumor had spread to my spine. I lay there, in the dark, with all the beeping sounds, praying that I would not have more tumors. Ann could not have been with me in that tube even if she had been there, but I was more upset afterwards than I had anticipated and could have used her support. Now she goes with me to pretty much every appointment.

2) As soon as I knew about the tumor, we told pretty much everyone we knew. We called our families, emailed friends and said prayers of concern at church. I talked with colleagues and began looking into medical leave and disability. (Fortunately, I had health insurance, but figuring out the school district's leave system was not easy.) No one asked awkward questions, and we got lots of support that we both needed.

3) I spent a month in the hospital and someone--usually my mom or Ann and once our friend Rita--always spent the night with me. I felt I needed them there. During the night, "vampire" nurses would come to take blood samples and my vitals, and--since I'm an organ donor-- at times I suspected they needed my lungs for someone else. Even in the dark and the silence, I always knew my guardians were there.

4) Joey, a rehab nurse, gave me a lecturette on learning to let people help me. At the time people were helping me stand and shower and flush, so I felt I was asking for plenty of help, but I've remembered the lecturette and have learned to seek more help than always feels comfortable. A couple of months out of the hospital, I went on a retreat for students in an administrative training program that I had decided to enter before I knew about the tumor. Ann went with me and helped me navigate the physical environment as well as the emotional stretch of interacting with all these strangers when I had so little concept of how my future might play out. The progam's director asked me what I needed, and she convinced the school to provide a cot so that I could rest during the long classes when I needed to. My parents and each of my siblings flew to Seattle to help take care of me and to give Ann a break. Church acquaintances, who became friends, gave me rides to the university and read long articles to me. Other students gave me rides home after classes. Close friends brought chocolate chip milkshakes to the hospital and called and came to visit but didn't stay too long. To the hospital, my friend Rose brought homemade chicken and rice, which I devoured. I think it may have been the best meal I ever tasted. For the next two years, colleagues gave me rides to and from work, since a car took about forty minutes round trip, and the van for people with disabilities took about six hours round trip. Doctors, too, I have contacted for advice more often than I did before since I really don't know what's important. I take drugs and vitamins and do exercises as recommended. Just taking all the vitamins and gargling black tea keeps me busy. I have been amazed by the gracious support and depth of kindness from so many people.

5) I started socializing and working after both surgery and radiation as soon as I could, making sure to make clear the parameters of my strength. Both work and a social life have kept me connected to the world beyond my health concerns and have made me redirect, not cancel, my lilfe in the world. Friends are gracious when, in the middle of dinner, I have to lie down (at my home or theirs), and Monday Ellen went for a walk around the block with me rather than a longer walk around the park. (She did that later.) Similarly, Ann helped me find ways to modify activities that I loved before my surgery but could no longer do in the same way. I sold my bike and bought a trike; we hike on wide trails, paved when possible. I exercise at a local gym (or did. I plan to again.) I listen to audiobooks and now read on a kindle.

6) Ann and I started this blog on caringbridge as a way to communicate updates on my health. That blog, for quite some time this winter, was my primary connection to the world. In it, I have connected with long-time friends in new ways, gotten to know my family better, made new friends, and re-connected with friends from the past. Writing about my thoughts and experiences has helped me to frame my life anew, in ways other than loss.

7) I found a support group of adults with epedymomas. Because this is a rare tumor, especially in adults, it has been helpful to communicate with others who may face similar questions and challenges. Others who are going through this disease and its treatments have offered practical suggestions, resources and their experiences. I don't write to the group often, but I read it a lot. These are my people now.

8) I allow myself to rest as much as I need, which since radiation has been quite a lot, and I am gentle with myself when I can't do as much as I'd like to do. This gentleness has required practice. I have also learned to trust my sense of limitations. When I feel weary, I rest, knowing that I will exercise again when I can. In this sense, I have come to trust myself.

I can't tell you how much it means to have you on this journey with me. God bless. Mary

Tuesday, June 1, 2010

NL #31: Oysters' essential questions

NL #31: "When human beings try to describe God, we are like a bunch of oysters trying to describe a ballerina.We simply do not have the equipment to understand something so utterly beyond us, but that’s never stopped us from trying.” (our minister Jim Carther quoting Barbara Brown Taylor referring to Robert Farrar Capon's Hunting the Divine Fox).

I remember first being interested in the question of what we cannot know because our minds don't have broad enough experiences when a museum educator visited my fourth grade class. She asked us what color things were: our jackets, our socks, etc. and then she used a black light, which showed me that white was purple and that what I thought was clear and immutable was, in fact, just a figment of my eye's experiences.

Maybe earlier than that, Dr. Seuss got me thinking. After Green Eggs and Ham, my favorite Dr. Seuss book was Horton Hears a Who. It still is. I can imagine worlds within worlds, getting smaller and smaller just as space gets bigger and bigger: universes like those wooden dolls that fit into one another. I can imagine not having the capacity to sense those other worlds. After all, I can't hear a dog whistle.

Perhaps because of this habit of mind, I love words that try to capture the unknown. One of my favorite words is "conundrum", a word I first recognized from a Dublin philospher-cab driver.( I went to Ireland because there were so many Irish poets travelling the US circuit and I'd read Joyce and wondered if everyone in Ireland wandered the streets and settled into the pubs speaking lyrically. They do. )

As a teacher, from time to time I would write on the board (first a chalk one and then a white one) Walt Whitman's quotation, "Do I contradict myself? / Very well, then. I contradict myself./ I contain multitudes." If anyone understands the fickle concept of the self, it's teenagers.

We are more complex than we imagine and our God, fittingly, is too. That's tight.

I realize that not everyone thinks that's tight. My brain, having sustained a liberal Southern Baptist upbringing, two tumors, a splitting of my cerebellum and radiation, is not the average brain. Lots of folks prefer answers to questions. A student once asked me, "Why do you always answer a question with a question?" In one of my best teachimg moments, I responded, "Why do you think I do that?" The student paused to think and then brightened, "See! You did it again!"

Perhaps the world is divided into those who love answers and those who love questions. (Yes, I know, the world is divided into people who divide the world and those who do not.) Perhaps we are all either Hamlet the philosopher or Horatio the pragmatist. As Hamlet says to Horatio, "There are more things in heaven and earth, Horatio,/ Than are dreamt of in your philosophy."

That's what I want to say to folks who are so clear on knowing the nature of God through literal readings of scripture and those who know human nature through their own lens: "There are more things in heaven and earth,...Than are dreamt of in your philosophy."

Do oysters have eyes? Could they even see Swan Lake? (Of course, I don't really understand ballet--or opera or baseball--either.)