NL#3: You have choices in how you will take today’s test. Each of you, like Diana, should be able to score 100 percent. You may choose to look at the list of allusions and see which ones you can identify OR You can look at the list of allusions and the works that follow to see if you can match the quotation with its source OR You can look below at the answers right away. Have fun! Yes, I am a geek, and yes, I often told my students to have fun when they took a test and yes, I often had fun taking tests.
Allusions
I take my waking slow.
Mary E and the Horrible, No Good, Very Bad Birthday
All means all.
With feathers
Excuse me, while I kiss the sky.
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
The world’s grace is, of course, still with me.
"Ain't Nobody Here But Us Chickens"
"The Lord called the donkey a fool."
Call me Mary.
"Precioussss"
"Thumper."
What a piece of work is man...and woman, too.
Not dead yet.
“Deep in my heart, I still believe, that we shall overcome some day,”
"Not Waving but Drowning"
"Twas a rough night."
"Run away!"
Wookie
I'm a lovah, not a fightah.
Innernets
Locusts
Sometimes you're the windshield. Sometimes you're the bug.
Matching: Match the artist and the artwork to the allusion above.
MacBeth in Shakespeare’s play, MacBeth.
Song by The Kinks.
Theodore Roethke poem “I Wake to Sleep and Take my Waking Slow”
Skit “Bring Out Your Dead” in the movie Monty Python and the Holy Grail.
George W. Bush
Judith Viorst’s children’s book, Alexander and the Horrible, No Good, Very Bad Day.
Education maxim.
Gollum in J.R.R. Tolkien’s novel, The Hobbit.
Emily Dickenson’s poem, “Hope is the Thing with Feathers.”
Charles Tindley’s gospel song, “We Will Overcome.”
Jimi Hendrix’s song, “Purple Haze.”
William Wordsworth’s poem, “Intimations of Immortality”
Wendell Berry’s poem, “The Peace of Wild Things.”
“The Giant Rabbit” skit in the movie Monty Python and the Holy Grail.
Stevie Smith’s poem, “Not Waving but Drowning.”
Common expression. Origin unknown.
Rabbit in Walt Disney’s movie Bambi.
Louis Jordan’s song “Ain’t Nobody Here But Us Chickens.”
Hamlet in Shakespeare’s play Hamlet.
Mary Chapin Carpenter’s country song, “The Bug” (Also sung by Dire Straits)
My Grandmother M.
“Ishmael” in Herman Melville’s novel, Moby Dick.
One of the ten plagues of Egypt in Exodus.
The kind of creature who is the hirsute character Chewbacca, best friend to Hans Solo in the movie Star Wars
Answers
I take my waking slow. Theodore Roethke poem “I Wake to Sleep and Take my Waking Slow”
Mary E and the Horrible, No Good, Very Bad Birthday. Judith Viorst’s children’s book, Alexander and the Horrible, No Good, Very Bad Day.
All means all. Education maxim.
With feathers. Emily Dickenson’s poem, “Hope is the Thing with Feathers.”
Excuse me, while I kiss the sky. Jimi Hendrix’s song, “Purple Haze.”
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
William Wordsworth’s poem, “Intimations of Immortality”
The world’s grace is, of course, still with me. Wendell Berry’s poem, “The Peace of Wild Things.”
"Ain't Nobody Here But Us Chickens." Louis Jordan’s song “Ain’t Nobody Here But Us Chickens.”
"The Lord called the donkey a fool." My Grandmother M.
Call me Mary. “Ishmael” in Herman Melville’s novel, Moby Dick.
"Precioussss." Gollum in J.R.R. Tolkien’s novel The Hobbit.
"Thumper." Rabbit in Walt Disney’s movie Bambi.
“What a piece of work is man.” Hamlet in Shakespeare’s play Hamlet.
Not dead yet. Skit “Bring Out Your Dead” in the movie Monty Python and the Holy Grail.
“Deep in my heart, I still believe, that we shall overcome some day,” Charles Tindley’s gospel song, “We Will Overcome.”
"Not Waving but Drowning" Stevie Smith’s poem, “Not Waving but Drowning.”
"Twas a rough night." MacBeth in Shakespeare’s play, MacBeth.
"Run away!" “The Giant Rabbit” skit in the movie Monty Python and the Holy Grail.
Wookie: the kind of creature who is the hirsute Star Wars character, best friend to Hans Solo, Chewbacca, in the movie Star Wars.
I'm a lovah, not a fightah. Song by The Kinks.
Innernets: George W. Bush
Locusts: One of the ten plagues of Egypt in Exodus.
Sometimes you're the windshield. Sometimes you're the bug. Mary Chapin Carperner’s country song, “The Bug” (Also sung by Dire Straits)
A Photograph of me without me in it
A photograph of me without me in it
Friday, April 16, 2010
Thursday, April 15, 2010
NL #2: I take my waking slow
NL #2 : Ann wakes in the morning like a superheroine. Her alarm makes a teenie noise as the radio is about to turn on. She hears it; her eyes pop open; she rips the tape off of her mouth and shuts off the radio before it's had a chanced to say anything; and she leaps to her feet, ready to rid the world of all bad things and to grow goodness in the world. (I have to imagine much of this as I never have opened my eyes before her feet hit the floor.) Even in her yoga, she takes on the world with warrior pose after warrior pose.
I, in contrast, take my waking slow. My first alarm turns on the radio and I give it a nasty stare. I stretch. I yawn. I moan. I try to cheer myself out of bed, but I've never been much of a cheerleader: "Rise and Shine!," I try, using the encouraging voice of the Camp Seafarer morning greeting. "Up, up, up, up," I say to myself, like a child watching a helium balloon ascend into the clouds. I might follow lack of success here with a more sporty, "Up and at 'em!" This doesn't work either, so I try philosophy: "No time like the present." This is the point where, if I have risen to my elbows, I lie my head back down on the pillow and moan from the strain of it all.
Next, I try music: First, a slightly revised version of Neil Sedaka's "Waking Up is Hard to Do," but I find the down dooby doo down down takes me further into the pillow. Then I try a camp song, which ends with the sun coming up and the dew falling away, "'Good morning, Good morning,' the little birds say." This usually does it. Magically I rise and head to the yoga mat, not to do warrior pose but a gentle stretch: cat-cow. I don't meow or moo.
A daily miracle.
Test tomorrow. Don't oversleep. Mary
I, in contrast, take my waking slow. My first alarm turns on the radio and I give it a nasty stare. I stretch. I yawn. I moan. I try to cheer myself out of bed, but I've never been much of a cheerleader: "Rise and Shine!," I try, using the encouraging voice of the Camp Seafarer morning greeting. "Up, up, up, up," I say to myself, like a child watching a helium balloon ascend into the clouds. I might follow lack of success here with a more sporty, "Up and at 'em!" This doesn't work either, so I try philosophy: "No time like the present." This is the point where, if I have risen to my elbows, I lie my head back down on the pillow and moan from the strain of it all.
Next, I try music: First, a slightly revised version of Neil Sedaka's "Waking Up is Hard to Do," but I find the down dooby doo down down takes me further into the pillow. Then I try a camp song, which ends with the sun coming up and the dew falling away, "'Good morning, Good morning,' the little birds say." This usually does it. Magically I rise and head to the yoga mat, not to do warrior pose but a gentle stretch: cat-cow. I don't meow or moo.
A daily miracle.
Test tomorrow. Don't oversleep. Mary
Wednesday, April 14, 2010
DAR #30: Mary E and the Horrible, No Good, Very Bad Birthday
DAR #30: Mary E and the Horrible, No Good, Very Bad Birthday
Please note: You will have a test Friday on literary (used broadly) references and allusions in this blog. I imagine that English majors may be at an advantage. One example: To what children's book does the title of this entry allude? Open note, open blog, open innernets.
Two years ago, I had the worst birthday ever. I was almost a year from brain surgery, unable to work, and beginning to learn which disabilities were probably permanent. In my year on medical leave, I participated in a university program for administrative certification. Kathy, the leader of the program, is a visionary, a compassionate person, who made adjustments to help me get through. When she asked at the end of the summer what I needed and I told her I needed a cot because it took too much energy to sit up so long, she arranged for a cot to be in the room where we took classes. Apparently ,though students often sleep in class, providing a cot was unusual.
I planned not to attend class on my birthday because an environmental education group was leading the seminar, and I suspected I would not be able to participate without hurting myself, but Kathy talked with them about my disabilities and said they would plan activities so that I could participate. I was skeptical, but agreed to try it.
For an opening activity, the thirty or so of us sat auditorium style. At the front of the seating was a piece of rolled up newspaper. I don’t really remember the details, but the objective was hit someone with the newspaper and that person had to run to the front and try to get back to their seat before you took their seat. Aside from not seeming like much of an activity to prepare me to be a school leader, I could hardly walk steadily and my only option in participating was to opt out, which I did by making it clear with my body language that I did not wish to be hit. My friend Keisha sat beside me and asked me how I felt: “Irritated.”
Debriefing the activity as a group, Keisha asked me to share my thoughts, and from that point forward the class was about me, something I didn’t feel comfortable about, though I did think the class should be about serving people with disabilities, me being the current example. Finally, my friend Angela offered to take me home. A relief. I’d had enough.
The next day, I wrote an essay about the experience to share with fellow students the next week. I couldn’t really see just re-entering as if nothing had happened, and I wanted my peers, who were exceptionally kind people, to think about working with folks with disabilities. I wanted to be clear that I thought an “opt out” option was not an adequate alternative. So the next week I shared this essay:
Living with Disabilities: Reflections on Teaching and Leading
Ten months ago I had surgery to remove a tumor from my brainstem. During that surgery I had a stroke. This surgery left me unable to walk or to use both of my eyes at the same time. Now I’m walking with a cane and wearing a patch so that I can function with double vision. Formerly an athlete, an avid walker, biker and hiker, I am now a person learning to live with my disabilities.
My primary emotional response since the diagnosis has been gratitude: for a loving partner-a rock in my life, a family generous with care and support, communities and circles of friends and colleagues who seek to help me use my skills and experience meaningfully, professional care-givers, health and disability insurance, the flexibility of administrators and directors in helping me continue my education and work in schools as I recover, and a faith that cradles me and gives me hope.
I am participating in an administrative internship at the state university and working in an internship in my previous district—at a small high school—while I am on medical leave. I have been working for eight years in schools with large percentages of students with disabilities—physical, emotional, and behavioral—and with students and their families otherwise struggling in this world: poverty, violence, jail, gangs, drugs, immigration, learning English. Though of course I thought about inclusion before my surgery, my disabilities and my continuing roles in education have me thinking differently about inclusion and education for all.
Please don’t single me out.
“How can we as a community help you to feel safe?” asked my instructor of the day. By nature a reserved person, unaccustomed to being the center of attention, I cringe when others dwell on my disabilities—even though I believe in their good intentions—especially when it seems an afterthought. If others don’t plan for me, I don’t want to be there. I wonder about students who must publicly explain why this class or this activity isn’t working for them and how to make it more effective for them. I especially wonder about students who are criticized or disciplined for not participating when they may be unable to participate. I wonder if this is especially difficult for students whose disabilities are not physical and therefore not obvious.
Inclusion doesn’t mean creating plans that create the alternative that allows a student to opt out.
In one of my university courses last week, a well-intentioned instructor said that some of the activities I could participate in, and when I needed to opt out I could. The first activity of the day included a type of tag where students run around and hit each other with a rolled up newspaper. My option was to put my hand on my head to indicate that I should not be hit. This class was not created for me. I needed the instructor to create real options for my learning, not just the option of opting out. How often have I had students who have not participated because I didn’t think of an option for them?
Holidays are stressful
Four years ago, I celebrated my 40th birthday with friends and family with a 60’s flashback party: disco ball, dancing, lava lamps, the Beatles, and peace signs. This year my birthday reminds me of the march of time, of how much I lost ten months ago and of how unsure I am about upcoming years. I know that some of our most struggling students have difficulties during the holidays. These days may be reminders of happier times, of how different their lives are than of those around them, of anxieties about the future. I wonder how often they feel fragile, like I do, and how hard they are working just to do the basics: get up in the morning, face each day, learn something, enter the community, keep it together. I wonder if in our joy we can notice their struggle.
Change is hard.
Simple changes can be hard for me to manage. A few months ago, I was in a district meeting that ended two hours early. This would usually be a cause of celebration, and was for most of the people in the room. For me, however, it meant that the transportation that I had arranged wouldn’t come for two hours and I would be alone in a building that was closing until they came. I thought it would get cold. Fortunately, a colleague took me home: relief except that I would be reprimanded by the city for not being there when my ride came.
Last week, during the state testing in my school, students not taking the test met together for community meetings to learn together and to address ways to improve the school. It was an exciting time for the community and for most students. I watched the stress level of students with disabilities, those who don’t speak English fluently and those who couldn’t find their space in the meetings (especially freshmen) go way up. I also worked with students—mostly seniors—who needed to be disciplined because they were disruptive during the meetings. “Am I in trouble?” many asked as they entered the room. They seemed so relieved when the discussion was more around how to help them participate responsibly than in telling them how bad they were. Because so many of us who are teaching and leading found these experiences exciting, I think we often mistake the difficulty of changing for disruptive behavior that should be punished. We have to plan carefully for those for whom change disrupts their carefully crafted methods of coping.
All means all—especially if “most” leaves me out.
The experiential education session may have worked for my colleagues, but it left me depressed and focused on how much I had lost. I was angry. I was not to be appeased on that day in spite of the good intentions of my colleagues and instructors. I left.
As an educator working hard to teach in meaningful ways, I sometimes felt relieved when a lesson engaged most of my students. I wonder now about students who have not been included all day—or all yea-- or most of their education. I wonder how often they are in the office because they’ve had it with not being served. I wonder how many of them are in the invisible statistics of those students who simply aren’t there anymore.
Laughter is a way of being part of the community.
I have always been a geek, delighted by learning: never the class clown. Friends and colleagues, however, have always commented on my dry sense of humor. Now, as a graduate student in class, I often use humor as a way to participate and to be someone other than just the student with disabilities. I really don’t like to cry or to share my struggles, so I’m more likely to try to make people laugh.
I think about class clowns, about how much they may be struggling and how much the humor allows them to be part of the community, even if the teacher disapproves. I think that the more compassionate students may be laughing because of their compassion rather than out of a desire to undermine the learning in the room, though as adults we often frame this collusion differently. We say, “Don’t encourage this bad behavior.”
What to do
I appreciate the fact that many teachers and colleagues want better to include me and struggling students in activities and to understand our experiences. Their compassion and want to understand is genuine.
Inclusion is hard and there is no magic answer, but I do have a few thoughts for teachers and leaders. 1) Make plans that emphasize inclusion in the community and in choices that include every student in the learning. Start by planning the lesson or schedule for students who struggle or for students with disabilities rather than trying to figure out how to include those with disabilities later. Then differentiate from there. In my current school, for example, the counselor hand scheduled each special education and ELL student before scheduling every other student. 2) Check in with students individually ahead of time (even right at the beginning of class or right before the activity) and not in front of the community in the moment about what will work for them. 3) Whether you are a teacher or an administrator, know that there may be a lot of pain under the surface of students and their families that you will never see and help them to make choices and to participate. Focus on student learning and wonder what behaviors might be saying about that student’s experience. 4) All of us with disabilities need to learn to advocate for ourselves and for our learning. I am not suggesting that we should not hold struggling students and students with disabilities to high academic and behavioral standards. I am saying that we should work to be truly inclusive.
Please note: You will have a test Friday on literary (used broadly) references and allusions in this blog. I imagine that English majors may be at an advantage. One example: To what children's book does the title of this entry allude? Open note, open blog, open innernets.
Two years ago, I had the worst birthday ever. I was almost a year from brain surgery, unable to work, and beginning to learn which disabilities were probably permanent. In my year on medical leave, I participated in a university program for administrative certification. Kathy, the leader of the program, is a visionary, a compassionate person, who made adjustments to help me get through. When she asked at the end of the summer what I needed and I told her I needed a cot because it took too much energy to sit up so long, she arranged for a cot to be in the room where we took classes. Apparently ,though students often sleep in class, providing a cot was unusual.
I planned not to attend class on my birthday because an environmental education group was leading the seminar, and I suspected I would not be able to participate without hurting myself, but Kathy talked with them about my disabilities and said they would plan activities so that I could participate. I was skeptical, but agreed to try it.
For an opening activity, the thirty or so of us sat auditorium style. At the front of the seating was a piece of rolled up newspaper. I don’t really remember the details, but the objective was hit someone with the newspaper and that person had to run to the front and try to get back to their seat before you took their seat. Aside from not seeming like much of an activity to prepare me to be a school leader, I could hardly walk steadily and my only option in participating was to opt out, which I did by making it clear with my body language that I did not wish to be hit. My friend Keisha sat beside me and asked me how I felt: “Irritated.”
Debriefing the activity as a group, Keisha asked me to share my thoughts, and from that point forward the class was about me, something I didn’t feel comfortable about, though I did think the class should be about serving people with disabilities, me being the current example. Finally, my friend Angela offered to take me home. A relief. I’d had enough.
The next day, I wrote an essay about the experience to share with fellow students the next week. I couldn’t really see just re-entering as if nothing had happened, and I wanted my peers, who were exceptionally kind people, to think about working with folks with disabilities. I wanted to be clear that I thought an “opt out” option was not an adequate alternative. So the next week I shared this essay:
Living with Disabilities: Reflections on Teaching and Leading
Ten months ago I had surgery to remove a tumor from my brainstem. During that surgery I had a stroke. This surgery left me unable to walk or to use both of my eyes at the same time. Now I’m walking with a cane and wearing a patch so that I can function with double vision. Formerly an athlete, an avid walker, biker and hiker, I am now a person learning to live with my disabilities.
My primary emotional response since the diagnosis has been gratitude: for a loving partner-a rock in my life, a family generous with care and support, communities and circles of friends and colleagues who seek to help me use my skills and experience meaningfully, professional care-givers, health and disability insurance, the flexibility of administrators and directors in helping me continue my education and work in schools as I recover, and a faith that cradles me and gives me hope.
I am participating in an administrative internship at the state university and working in an internship in my previous district—at a small high school—while I am on medical leave. I have been working for eight years in schools with large percentages of students with disabilities—physical, emotional, and behavioral—and with students and their families otherwise struggling in this world: poverty, violence, jail, gangs, drugs, immigration, learning English. Though of course I thought about inclusion before my surgery, my disabilities and my continuing roles in education have me thinking differently about inclusion and education for all.
Please don’t single me out.
“How can we as a community help you to feel safe?” asked my instructor of the day. By nature a reserved person, unaccustomed to being the center of attention, I cringe when others dwell on my disabilities—even though I believe in their good intentions—especially when it seems an afterthought. If others don’t plan for me, I don’t want to be there. I wonder about students who must publicly explain why this class or this activity isn’t working for them and how to make it more effective for them. I especially wonder about students who are criticized or disciplined for not participating when they may be unable to participate. I wonder if this is especially difficult for students whose disabilities are not physical and therefore not obvious.
Inclusion doesn’t mean creating plans that create the alternative that allows a student to opt out.
In one of my university courses last week, a well-intentioned instructor said that some of the activities I could participate in, and when I needed to opt out I could. The first activity of the day included a type of tag where students run around and hit each other with a rolled up newspaper. My option was to put my hand on my head to indicate that I should not be hit. This class was not created for me. I needed the instructor to create real options for my learning, not just the option of opting out. How often have I had students who have not participated because I didn’t think of an option for them?
Holidays are stressful
Four years ago, I celebrated my 40th birthday with friends and family with a 60’s flashback party: disco ball, dancing, lava lamps, the Beatles, and peace signs. This year my birthday reminds me of the march of time, of how much I lost ten months ago and of how unsure I am about upcoming years. I know that some of our most struggling students have difficulties during the holidays. These days may be reminders of happier times, of how different their lives are than of those around them, of anxieties about the future. I wonder how often they feel fragile, like I do, and how hard they are working just to do the basics: get up in the morning, face each day, learn something, enter the community, keep it together. I wonder if in our joy we can notice their struggle.
Change is hard.
Simple changes can be hard for me to manage. A few months ago, I was in a district meeting that ended two hours early. This would usually be a cause of celebration, and was for most of the people in the room. For me, however, it meant that the transportation that I had arranged wouldn’t come for two hours and I would be alone in a building that was closing until they came. I thought it would get cold. Fortunately, a colleague took me home: relief except that I would be reprimanded by the city for not being there when my ride came.
Last week, during the state testing in my school, students not taking the test met together for community meetings to learn together and to address ways to improve the school. It was an exciting time for the community and for most students. I watched the stress level of students with disabilities, those who don’t speak English fluently and those who couldn’t find their space in the meetings (especially freshmen) go way up. I also worked with students—mostly seniors—who needed to be disciplined because they were disruptive during the meetings. “Am I in trouble?” many asked as they entered the room. They seemed so relieved when the discussion was more around how to help them participate responsibly than in telling them how bad they were. Because so many of us who are teaching and leading found these experiences exciting, I think we often mistake the difficulty of changing for disruptive behavior that should be punished. We have to plan carefully for those for whom change disrupts their carefully crafted methods of coping.
All means all—especially if “most” leaves me out.
The experiential education session may have worked for my colleagues, but it left me depressed and focused on how much I had lost. I was angry. I was not to be appeased on that day in spite of the good intentions of my colleagues and instructors. I left.
As an educator working hard to teach in meaningful ways, I sometimes felt relieved when a lesson engaged most of my students. I wonder now about students who have not been included all day—or all yea-- or most of their education. I wonder how often they are in the office because they’ve had it with not being served. I wonder how many of them are in the invisible statistics of those students who simply aren’t there anymore.
Laughter is a way of being part of the community.
I have always been a geek, delighted by learning: never the class clown. Friends and colleagues, however, have always commented on my dry sense of humor. Now, as a graduate student in class, I often use humor as a way to participate and to be someone other than just the student with disabilities. I really don’t like to cry or to share my struggles, so I’m more likely to try to make people laugh.
I think about class clowns, about how much they may be struggling and how much the humor allows them to be part of the community, even if the teacher disapproves. I think that the more compassionate students may be laughing because of their compassion rather than out of a desire to undermine the learning in the room, though as adults we often frame this collusion differently. We say, “Don’t encourage this bad behavior.”
What to do
I appreciate the fact that many teachers and colleagues want better to include me and struggling students in activities and to understand our experiences. Their compassion and want to understand is genuine.
Inclusion is hard and there is no magic answer, but I do have a few thoughts for teachers and leaders. 1) Make plans that emphasize inclusion in the community and in choices that include every student in the learning. Start by planning the lesson or schedule for students who struggle or for students with disabilities rather than trying to figure out how to include those with disabilities later. Then differentiate from there. In my current school, for example, the counselor hand scheduled each special education and ELL student before scheduling every other student. 2) Check in with students individually ahead of time (even right at the beginning of class or right before the activity) and not in front of the community in the moment about what will work for them. 3) Whether you are a teacher or an administrator, know that there may be a lot of pain under the surface of students and their families that you will never see and help them to make choices and to participate. Focus on student learning and wonder what behaviors might be saying about that student’s experience. 4) All of us with disabilities need to learn to advocate for ourselves and for our learning. I am not suggesting that we should not hold struggling students and students with disabilities to high academic and behavioral standards. I am saying that we should work to be truly inclusive.
NL #1: With Feathers
NL (New Life) #1: Like Homer's Odyssey, my story begins in medias res, so I have written an introduction for my blog book which I am sharing with you here:
Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.
--Emily Dickenson
“Emily Dickenson was wrong. Hope is not the thing with feathers. My nephew is….”
--Woody Allen, Without Feathers
Like climbers who ascend the world’s highest peaks, I am an adventurer. I have struggled through challenges most others don’t face; I have climbed to the top to see that the climb down is just as long and perhaps more arduous; I have seen the world from a perspective that others may imagine but few have experienced. Sure, my challenges have been differentthan theirs: big hair, a Southern upbringing, the Seattle transportation system, a brain tumor, brain surgery, radiation... Like the climbers, though, I appreciate the journey’s challenge. I, like those climbers, see the world and myself in a new way because of this journey. I have a story to tell.
When my doctor told me I had a brain tumor, I faced a challenge I had never before considered: how do I tell people I have a brain tumor? My first few efforts were abysmal: First, I went to tell the school counselor where I worked that I might not be able to proctor the statewide exams because I might need to have brain surgery instead: a little abrupt. Then a talented theatre teacher from Ann's school, whom I don’t know well, called. We had talked about combining immigration stories from my many recent immigrant and refugee students with her more affluent, less recent immigrants (like centuries ago) into a theatre production. When she called to discuss the idea further, I said, “I don’t think I can work on this right now. I just learned that I have a brain tumor.” Again, a bit abrupt.
So I started practicing. In the bathroom mirror I practiced the sentence, studying my face and placing the emphasis on different words. Was it, “I have a brain tumor” or “I have a brain tumor”? I made some phone calls, feeling that I needed to let folks know before prayers of concern at church on Sunday. When I walked into church Sunday morning, my friend Karen said, “My answering machine isn’t working too well. Did you leave a message saying that you have a brain tumor?” Apparently, that wasn’t too smooth either.
I thought about what my doctor had done. I had been to see her for almost a year about headaches, slight balance issues, vision problems. At first, she told me to drink more water. When that didn’t help, I went to an ophthalmologist. He told me to drink more water, too. As a high school teacher with few breaks in the day, all that water began affecting me at work. When I started seeing double while biking the next spring, I contacted my doctor again and told her I simply could not drink any more water. “I think it’s time for a CAT scan,” she said. I was nonchalant, feeling like this was a rule-out, like I was finally getting somewhere after years of blacking out, feeling faint, and struggling with fatigue.
I was not home the first day the doctor called, so she left a message, “Hi Mary. This is Dr. M. I need to talk with you, so please call back as soon as you get this message.” I suspected this wouldn’t be good news. Otherwise, she’d just leave the news on voice mail. I was on spring break from school and didn’t want to ruin it, so I was passive aggressive and didn’t return her increasingly assertive messages. Once, she left her home phone number. A really bad sign. I still didn’t call. My partner Ann and I went to a Korean bath for a “scrub” and then had cosmopolitans on the deck. No need to ruin the last moments before whatever this bad news was.
The next Monday, I arranged to use the principal’s office for a private phone call after school. When we connected, the first thing Dr. M said was, “I guess you already know this is going to be bad news.” My doctor had prepared me for bad news already. I thought, “I should do this, too.”
So I began to start my speech with comments like, “I have some bad news about my health that I need to talk with you about.” I eventually put the emphasis on brain, but not too exaggerated: “I have a brain tumor.” Although the announcement was still something of a shocker, folks seemed more prepared for the news.
Plans proceeded pretty fast, as this tumor was (according to my surgeon), “a big nasty tumor in a really bad place.” How big? At first he said it was the size of a grape. Then the size of a scuppernong and-- after surgery revealed its actual size--the size of a plum. (I don’t know why they always seem to compare tumors to fruits. A friend had a cyst “as big as an orange.”)
My father came into town to visit the neurosurgeon with me and my partner Ann. What would happen in the surgery? If surgery stories make you queasy, you should skip this part. Surgeons would cut out the back of my skull, split my cerebellum, use some fancy new video equipment to see the tumor and remove it from my fourth ventricle. Surgeons wouldn’t go into my brainstem, so I might need radiation afterwards in case they didn't get it all. There was five percent to 10 percent chance of lots of things going wrong: I could die or lose my ability to walk or swallow or breathe, for example. I might turn into a Republican, but that was unlikely. It would probably take me five to seven days of recovery in the hospital and six weeks at home to recover. I asked Dr. M, “What does ‘recovery’ mean? Does it mean I can sit up or go to the bathroom by myself or go on a ten mile hike?” Apparently, it might mean any of those things. Or none of them.
I did the best I could to prepare my students for a new teacher and myself for the unknown. I made a list of family items I’d like to go to my nieces and nephews in case I died. I was in my early forties and in reasonably good shape. I ate at least one unit from all the food groups (vegetable, protein, fruit, beer) each day. I figured I’d be fine.
I wore my tangerine “Breathe” shirt with the “Life is Good” stick person sitting in the lotus position to the hospital. When the nurse called my name, I held up my arms in victory as if I’d just scored a touchdown. When the anesthesiologist jabbed the heck out of my right arm in an attempt to get a line in my dainty veins, I was good humored. When they wheeled me into the surgery room, the size of my bedroom with lots of folks in masks and surgical gowns looking professional, my lead neurosurgeon introduced me to everyone and I was Southern polite: “Nice to meet you. Thanks for being here…” The anesthesiologist lifted my gown, saw my trembling abdomen and said with surprise, “You’re nervous!” This was the closest I came to getting snippy: “Of course I am. All these nice people are going to cut open my brain.” She put me out.
When I came to, I was in the recovery room and Ann was saying, “Congratulations. You made it.” She told me she’d send in my parents in a minute so that they could see that I was okay and then other close friends would visit very shortly in ones and twos. Everyone, it seemed, needed to verify that I was still breathing. “Okay,” I said, “but tell Dad to be quiet.” My dad can be quite loud. Ann saw this as evidence that my sense of humor was still intact. I wasn’t kidding.
The rest follows in this book. There were complications. I had a small stroke and some damage to my 3rd, 4th, 6th and 7th nerves. The right side of my face was paralyzed. I spent almost a month in recovery where I learned to walk (with a walker), to flush the toilet and to shower again. The following year, I had two eye muscle surgeries. Almost three years later, radiation to address a new tumor. I still have disabilities and much has been hard, but there have also been gifts along the way—the gift of a caring family and community and even, sometimes, strangers; the gift of living in the world in a new way, seeing the world differently, and having the world see me differently; the gift of seeing in myself faith, courage and humor that I did not know would carry on with me.
This book began as a blog during radiation, sharing my progress with family and friends, but it soon became my way of connecting with the world and reflecting on my journey. I share my story with you because I think it’s interesting and hopeful and I believe this world--and perhaps you--can use stories of hope. Thanks for joining my community. Mary
Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.
--Emily Dickenson
“Emily Dickenson was wrong. Hope is not the thing with feathers. My nephew is….”
--Woody Allen, Without Feathers
Like climbers who ascend the world’s highest peaks, I am an adventurer. I have struggled through challenges most others don’t face; I have climbed to the top to see that the climb down is just as long and perhaps more arduous; I have seen the world from a perspective that others may imagine but few have experienced. Sure, my challenges have been differentthan theirs: big hair, a Southern upbringing, the Seattle transportation system, a brain tumor, brain surgery, radiation... Like the climbers, though, I appreciate the journey’s challenge. I, like those climbers, see the world and myself in a new way because of this journey. I have a story to tell.
When my doctor told me I had a brain tumor, I faced a challenge I had never before considered: how do I tell people I have a brain tumor? My first few efforts were abysmal: First, I went to tell the school counselor where I worked that I might not be able to proctor the statewide exams because I might need to have brain surgery instead: a little abrupt. Then a talented theatre teacher from Ann's school, whom I don’t know well, called. We had talked about combining immigration stories from my many recent immigrant and refugee students with her more affluent, less recent immigrants (like centuries ago) into a theatre production. When she called to discuss the idea further, I said, “I don’t think I can work on this right now. I just learned that I have a brain tumor.” Again, a bit abrupt.
So I started practicing. In the bathroom mirror I practiced the sentence, studying my face and placing the emphasis on different words. Was it, “I have a brain tumor” or “I have a brain tumor”? I made some phone calls, feeling that I needed to let folks know before prayers of concern at church on Sunday. When I walked into church Sunday morning, my friend Karen said, “My answering machine isn’t working too well. Did you leave a message saying that you have a brain tumor?” Apparently, that wasn’t too smooth either.
I thought about what my doctor had done. I had been to see her for almost a year about headaches, slight balance issues, vision problems. At first, she told me to drink more water. When that didn’t help, I went to an ophthalmologist. He told me to drink more water, too. As a high school teacher with few breaks in the day, all that water began affecting me at work. When I started seeing double while biking the next spring, I contacted my doctor again and told her I simply could not drink any more water. “I think it’s time for a CAT scan,” she said. I was nonchalant, feeling like this was a rule-out, like I was finally getting somewhere after years of blacking out, feeling faint, and struggling with fatigue.
I was not home the first day the doctor called, so she left a message, “Hi Mary. This is Dr. M. I need to talk with you, so please call back as soon as you get this message.” I suspected this wouldn’t be good news. Otherwise, she’d just leave the news on voice mail. I was on spring break from school and didn’t want to ruin it, so I was passive aggressive and didn’t return her increasingly assertive messages. Once, she left her home phone number. A really bad sign. I still didn’t call. My partner Ann and I went to a Korean bath for a “scrub” and then had cosmopolitans on the deck. No need to ruin the last moments before whatever this bad news was.
The next Monday, I arranged to use the principal’s office for a private phone call after school. When we connected, the first thing Dr. M said was, “I guess you already know this is going to be bad news.” My doctor had prepared me for bad news already. I thought, “I should do this, too.”
So I began to start my speech with comments like, “I have some bad news about my health that I need to talk with you about.” I eventually put the emphasis on brain, but not too exaggerated: “I have a brain tumor.” Although the announcement was still something of a shocker, folks seemed more prepared for the news.
Plans proceeded pretty fast, as this tumor was (according to my surgeon), “a big nasty tumor in a really bad place.” How big? At first he said it was the size of a grape. Then the size of a scuppernong and-- after surgery revealed its actual size--the size of a plum. (I don’t know why they always seem to compare tumors to fruits. A friend had a cyst “as big as an orange.”)
My father came into town to visit the neurosurgeon with me and my partner Ann. What would happen in the surgery? If surgery stories make you queasy, you should skip this part. Surgeons would cut out the back of my skull, split my cerebellum, use some fancy new video equipment to see the tumor and remove it from my fourth ventricle. Surgeons wouldn’t go into my brainstem, so I might need radiation afterwards in case they didn't get it all. There was five percent to 10 percent chance of lots of things going wrong: I could die or lose my ability to walk or swallow or breathe, for example. I might turn into a Republican, but that was unlikely. It would probably take me five to seven days of recovery in the hospital and six weeks at home to recover. I asked Dr. M, “What does ‘recovery’ mean? Does it mean I can sit up or go to the bathroom by myself or go on a ten mile hike?” Apparently, it might mean any of those things. Or none of them.
I did the best I could to prepare my students for a new teacher and myself for the unknown. I made a list of family items I’d like to go to my nieces and nephews in case I died. I was in my early forties and in reasonably good shape. I ate at least one unit from all the food groups (vegetable, protein, fruit, beer) each day. I figured I’d be fine.
I wore my tangerine “Breathe” shirt with the “Life is Good” stick person sitting in the lotus position to the hospital. When the nurse called my name, I held up my arms in victory as if I’d just scored a touchdown. When the anesthesiologist jabbed the heck out of my right arm in an attempt to get a line in my dainty veins, I was good humored. When they wheeled me into the surgery room, the size of my bedroom with lots of folks in masks and surgical gowns looking professional, my lead neurosurgeon introduced me to everyone and I was Southern polite: “Nice to meet you. Thanks for being here…” The anesthesiologist lifted my gown, saw my trembling abdomen and said with surprise, “You’re nervous!” This was the closest I came to getting snippy: “Of course I am. All these nice people are going to cut open my brain.” She put me out.
When I came to, I was in the recovery room and Ann was saying, “Congratulations. You made it.” She told me she’d send in my parents in a minute so that they could see that I was okay and then other close friends would visit very shortly in ones and twos. Everyone, it seemed, needed to verify that I was still breathing. “Okay,” I said, “but tell Dad to be quiet.” My dad can be quite loud. Ann saw this as evidence that my sense of humor was still intact. I wasn’t kidding.
The rest follows in this book. There were complications. I had a small stroke and some damage to my 3rd, 4th, 6th and 7th nerves. The right side of my face was paralyzed. I spent almost a month in recovery where I learned to walk (with a walker), to flush the toilet and to shower again. The following year, I had two eye muscle surgeries. Almost three years later, radiation to address a new tumor. I still have disabilities and much has been hard, but there have also been gifts along the way—the gift of a caring family and community and even, sometimes, strangers; the gift of living in the world in a new way, seeing the world differently, and having the world see me differently; the gift of seeing in myself faith, courage and humor that I did not know would carry on with me.
This book began as a blog during radiation, sharing my progress with family and friends, but it soon became my way of connecting with the world and reflecting on my journey. I share my story with you because I think it’s interesting and hopeful and I believe this world--and perhaps you--can use stories of hope. Thanks for joining my community. Mary
Tuesday, April 13, 2010
Excuse me, while I kiss the sky
Champagne all round. The tumor is GONE. No mas. No more. Nada. The doctors anticipated it still being there with the hope that it would be shrinking over time, but it is just gone. Thanks for being with me, for your prayers and for crossing your fingers. Thanks especially to those who have been holding your breath.You can exhale now. I'm so elated I feel a little drunk. mary
DAR #29: Genesis
DAR #29: The Southern Baptist church where I grew up comprised an eclectic congregation of hippie Southern Baptists, professors from local colleges and universities, artists and young parents like mine who wanted to attend a church more liberal than they were. We were as likely to sing Bob Dylan’s “Blowin’ in the Wind” as any hymn and to read The Velveteen Rabbit as any Bible stories. The church took a stand against the Vietnam War and had a sister church, a storehouse church with a primarily black congregation. Today they also have a sister church in Cuba.
After I graduated, the church tussled with questions of rightness and then decided to ask the minister to perform a gay union ceremony. That was too far. The church was expelled from the Southern Baptist Convention and is now an American Baptist Church. Today, the church has two ministers: a straight man whose intellectual sermons would make many more traditional church-goers cringe and a lesbian who, just by being both a woman and a gay person, makes those same folks cringe.
It is, and always has been, a lively place of spiritual quest, passion for social justice, community. As many Southern churches are, it’s large with a downstairs sanctuary that seats maybe four hundred and three upstairs balconies where my friend Ande and I sat so that we could slip out when things got boring and go to the local park to swing on the swings. We always wore our bell-bottom blue jeans with peace sign patches to church, so we were appropriately dressed for both church and the park.
For such a large place, the sanctuary feels intimate. There are rich stained glass windows and hues of gold, purple and blue that make it seem—somehow—cozier. If you go there today, my dad will probably be sitting on the right as you enter, in the fourth row, behind the Corrells, and my mom will be the one who hits the high note in the choir
I didn’t realize the church was so unusual until I tried to find a home church in Dallas. I assumed Dallas churches would be similar to the church in which I had grown up, but with different people. I visited 17 churches and the closest I found was a Universalist congregation that met in a very brown room. It felt more like college than church, so I gave up on it.
Now Ann and I are part of a Methodist congregation, much smaller but in many respects similar to my first congregation. This congregation, at the forefront of the move to “reconcile” with GLBTQ persons, supports us as a couple and has been a tremendous support throughout our time with my tumors. I am guessing that they are praying for us today as we go to find out if this radiation has been successful and that they will be there for us no matter what comes next.
Feeling grateful and anxious to know the MRI report. I’ll let you know what we learn. Mary
After I graduated, the church tussled with questions of rightness and then decided to ask the minister to perform a gay union ceremony. That was too far. The church was expelled from the Southern Baptist Convention and is now an American Baptist Church. Today, the church has two ministers: a straight man whose intellectual sermons would make many more traditional church-goers cringe and a lesbian who, just by being both a woman and a gay person, makes those same folks cringe.
It is, and always has been, a lively place of spiritual quest, passion for social justice, community. As many Southern churches are, it’s large with a downstairs sanctuary that seats maybe four hundred and three upstairs balconies where my friend Ande and I sat so that we could slip out when things got boring and go to the local park to swing on the swings. We always wore our bell-bottom blue jeans with peace sign patches to church, so we were appropriately dressed for both church and the park.
For such a large place, the sanctuary feels intimate. There are rich stained glass windows and hues of gold, purple and blue that make it seem—somehow—cozier. If you go there today, my dad will probably be sitting on the right as you enter, in the fourth row, behind the Corrells, and my mom will be the one who hits the high note in the choir
I didn’t realize the church was so unusual until I tried to find a home church in Dallas. I assumed Dallas churches would be similar to the church in which I had grown up, but with different people. I visited 17 churches and the closest I found was a Universalist congregation that met in a very brown room. It felt more like college than church, so I gave up on it.
Now Ann and I are part of a Methodist congregation, much smaller but in many respects similar to my first congregation. This congregation, at the forefront of the move to “reconcile” with GLBTQ persons, supports us as a couple and has been a tremendous support throughout our time with my tumors. I am guessing that they are praying for us today as we go to find out if this radiation has been successful and that they will be there for us no matter what comes next.
Feeling grateful and anxious to know the MRI report. I’ll let you know what we learn. Mary
Monday, April 12, 2010
DAR #28: Simply Extraordinary
DAR #28
Thanks to the human heart by which we live,
Thanks to its tenderness, its joys, and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
--William Wordsworth
I have never been hit by a car, but I have been hit by a squirrel. My college friend Laura and I were circumnavigating the tree lined path around our college campus, when I saw something out of my right eye just before a mass hit me square in the head. “What was that?” Both Laura and I looked left to see a squirrel poking its head out from the base of a tree to the left, several feet lower than he had intended to land, looking up at us with wide eyes that asked the same question: “What was that?”
I have neither climbed K2 (or any snow capped mountain) nor gone scuba diving off the Great Barrier Reef (or anywhere actually), but I have witnessed simpler extraordinary gifts of nature. I swam in Costa Rica’s turquoise waters and watched the monkeys play leapfrog (I don’t know if they call it that) through the trees as Macaws swooped by. I climbed to the “roof of the world,” a mountain overlooking Lalibela, Ethiopia, and listened to the monks’ chanting and drumming bounce off the mountain walls. I have witnessed avalanche lilies bloom from under their snowy blanket and the pink sunset glow on Mount Rainier. I watched giraffes gallop across the Serengeti and Masai men leap from standing still as high as NBA players running to dunk. With a Mayan family, I climbed the pyramids of Tikal and with a Salvadoran family I ate New Year’s tamales. I have witnessed teenagers move from apparent apathy to engagement, from preparing for gang life to readying themselves for college life.
Once when I was waterskiing in the NC Waterway (proving to myself that I could still ski at 40), I noticed a dolphin in the waters ahead and dropped the ski rope so that no dolphin would die in the motor’s blades for me. I slowly sank into the water and the dolphin came to me, lifted itself by its tail from the water, and smiled for a long moment before disappearing from me forever. The boat was turning around so no one else saw it. Just my moment with a dolphin.
When my friends Jack and Sandy visited decades ago, we went to Orcas Island for the weekend and were sitting on a bench watching stars from a meteor shower fall when I noticed the green and magenta glow of the Northern Lights on the horizon. Either that or Close Encounters of the Fourth Kind.
When I was 15 years old, my parents took me on a tour of “the west.” We took what looked like a shortcut on the map into Yellowstone National Park. The reason it looked like a short cut on the map, and the reason this route had not been recommended, was that we drove straight up and down a snowy mountain. Probably because I am my parents’ favorite child, I was sitting in the middle up front while my younger siblings squabbled in the back seat. I still remember coming around a bend and seeing the awesome landscape of mountains, rocks and snow below us. I gasped. It’s the first time I remember beauty taking my breath away.
More recently, my partner Ann and I were hiking early one spring morning at Crystal Mountain because we’d heard that elk gathered at the ridge of this trail in the mornings. I heard a rustle on the trail’s high side and paused so as not to frighten the elk. An adolescent grizzly stepped into the path just in front of me. I gasped, from fear and from the stunning closeness of such wildness, and the two of us stared at one another for a split second before he continued his tumble down the mountainside. Because I’m chicken, Ann led the rest of the way.
One winter, cross country skiing in the North Cascades, I took a quiet trail called “Red Fox Run.” I was alone. A black fox joined me just off the trail and ran along beside me for a quarter mile or so. That is the grace of the world.
I have rafted the Colorado River rapids and joined the Grand Canyon swim team. Ann and I watched a lightning storm dance above us as we sat on a rock by the river, the show as compelling as any 3D movie. In Alaska, we watched grizzlies fishing at the top of a small waterfall, trying not to cheer when they caught a salmon. In our own yard, spring brings crocus, then daffodils, now tulips and later roses to bloom.
Since it’s not so easy for me to get to out of the way places anymore, I feared that my days of such extraordinary visions were over. Then last summer Ann and I went to Paradise at Mount Rainier and left the inn early for a morning hike because the afternoon heat was too much. As we started up the paved trail, we gasped. A black fox was hunting for its morning snack just ahead of us. Pacing, looking into the blooming heather, staring and then pouncing: straight up and straight down. No catch. The world’s grace is, of course, still with me.
Thanks to the human heart by which we live,
Thanks to its tenderness, its joys, and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
--William Wordsworth
I have never been hit by a car, but I have been hit by a squirrel. My college friend Laura and I were circumnavigating the tree lined path around our college campus, when I saw something out of my right eye just before a mass hit me square in the head. “What was that?” Both Laura and I looked left to see a squirrel poking its head out from the base of a tree to the left, several feet lower than he had intended to land, looking up at us with wide eyes that asked the same question: “What was that?”
I have neither climbed K2 (or any snow capped mountain) nor gone scuba diving off the Great Barrier Reef (or anywhere actually), but I have witnessed simpler extraordinary gifts of nature. I swam in Costa Rica’s turquoise waters and watched the monkeys play leapfrog (I don’t know if they call it that) through the trees as Macaws swooped by. I climbed to the “roof of the world,” a mountain overlooking Lalibela, Ethiopia, and listened to the monks’ chanting and drumming bounce off the mountain walls. I have witnessed avalanche lilies bloom from under their snowy blanket and the pink sunset glow on Mount Rainier. I watched giraffes gallop across the Serengeti and Masai men leap from standing still as high as NBA players running to dunk. With a Mayan family, I climbed the pyramids of Tikal and with a Salvadoran family I ate New Year’s tamales. I have witnessed teenagers move from apparent apathy to engagement, from preparing for gang life to readying themselves for college life.
Once when I was waterskiing in the NC Waterway (proving to myself that I could still ski at 40), I noticed a dolphin in the waters ahead and dropped the ski rope so that no dolphin would die in the motor’s blades for me. I slowly sank into the water and the dolphin came to me, lifted itself by its tail from the water, and smiled for a long moment before disappearing from me forever. The boat was turning around so no one else saw it. Just my moment with a dolphin.
When my friends Jack and Sandy visited decades ago, we went to Orcas Island for the weekend and were sitting on a bench watching stars from a meteor shower fall when I noticed the green and magenta glow of the Northern Lights on the horizon. Either that or Close Encounters of the Fourth Kind.
When I was 15 years old, my parents took me on a tour of “the west.” We took what looked like a shortcut on the map into Yellowstone National Park. The reason it looked like a short cut on the map, and the reason this route had not been recommended, was that we drove straight up and down a snowy mountain. Probably because I am my parents’ favorite child, I was sitting in the middle up front while my younger siblings squabbled in the back seat. I still remember coming around a bend and seeing the awesome landscape of mountains, rocks and snow below us. I gasped. It’s the first time I remember beauty taking my breath away.
More recently, my partner Ann and I were hiking early one spring morning at Crystal Mountain because we’d heard that elk gathered at the ridge of this trail in the mornings. I heard a rustle on the trail’s high side and paused so as not to frighten the elk. An adolescent grizzly stepped into the path just in front of me. I gasped, from fear and from the stunning closeness of such wildness, and the two of us stared at one another for a split second before he continued his tumble down the mountainside. Because I’m chicken, Ann led the rest of the way.
One winter, cross country skiing in the North Cascades, I took a quiet trail called “Red Fox Run.” I was alone. A black fox joined me just off the trail and ran along beside me for a quarter mile or so. That is the grace of the world.
I have rafted the Colorado River rapids and joined the Grand Canyon swim team. Ann and I watched a lightning storm dance above us as we sat on a rock by the river, the show as compelling as any 3D movie. In Alaska, we watched grizzlies fishing at the top of a small waterfall, trying not to cheer when they caught a salmon. In our own yard, spring brings crocus, then daffodils, now tulips and later roses to bloom.
Since it’s not so easy for me to get to out of the way places anymore, I feared that my days of such extraordinary visions were over. Then last summer Ann and I went to Paradise at Mount Rainier and left the inn early for a morning hike because the afternoon heat was too much. As we started up the paved trail, we gasped. A black fox was hunting for its morning snack just ahead of us. Pacing, looking into the blooming heather, staring and then pouncing: straight up and straight down. No catch. The world’s grace is, of course, still with me.
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