I imagine that having an ependymoma (my brand of brain tumor) is like living on the dark side of the moon. It's dark and cold. If the tether holding me to this world breaks, I may drift into the dark black hole of space. Few people go there. Few people even look there. There's a strange beauty in it all.
“Why is there a national ependymoma awareness day?” you may wonder. “Hardly anyone has one.” Exactly. Ependymomas, which generally occur in the brain or the spine, are rare tumors in children and even more rare in adults like me.
In trying to figure out what rare means in this case, I asked my dad, a pediatrician for a gazillion years, how many patients with brain tumors his practice saw over the years. “Six.” And how many of those were ependymomas? "None." And these tumors are more common in children.
A man in my online support group said that his doctor told him that ependymomas occur in one of 350,000 adults around age 50. That would be two adults in Seattle, where I live, or one in Raleigh, NC, where I grew up. That’s not very many.
Because they’re so rare, not much is known about them. These tumors are probably different kinds of tumors that are classified as one right now because we don’t know much. Treatment regimens generally involve surgery and radiation and sometimes chemotherapy, especially with recurrences.
When I had my second tumor, the doctors on tumor boards seemed to have a great time debating the best treatment for me. Opinions ranged from “do nothing” to “do surgery, radiation, and chemotherapy.” I was not having a great time. It’s hard to be just beyond the scientific horizon.
Doctors don’t even agree about whether or not this tumor is a cancer. My neurosurgeon wrote in a book that all brain tumors are cancers. My radiation oncologist, a doctor at the same health center, assured me that this is not a cancer. The World Health Organization says that only grade three epedymomas are cancers, though any of them can spread and recur. Life insurance companies treat all ependymomas as cancers, so that someone with an ependymoma can’t get life insurance until they’ve had a stable MRI for eight years.
We need more research so that diagnosis and treatment might be clearer. That’s why the Collaborative Ependymoma Research Network (CERN) is working to raise awareness on National Ependymoma Awareness Day, April 19.
Ironically, the WHO won't classify the tumors as cancerous until more research is done, and research costs money. Funds designated for cancer research can't be used for researching ependymomas because more research needs to be done. You're smart. You see the problem.
CERN is releasing butterflies as a symbol of hope that research can bring. So put on your butterfly pin or your butterfly costume and tell a friend that you know someone who needs your help. That’s me.
A Photograph of me without me in it
A photograph of me without me in it
Showing posts with label tumor. Show all posts
Showing posts with label tumor. Show all posts
Tuesday, April 17, 2012
Sunday, March 18, 2012
Gratitude
My first good friend with disabilities, though hers were invisible, was my college friend Jenny. She had childhood-onset diabetes, which affected her ability to see, especially at night. She was also color-blind. She wanted to go into medicine, but she could not see the little flags on the pig in the Biology lab to identify body parts, so she took a long road. Now she’s a psychiatrist, and she’s thriving after a kidney transplant.
Jenny came to visit after my surgery, and she told me that one day I might be grateful for my tumor. I inferred that she is grateful for her diabetes, and I admire her wisdom, but at the time I was not yet grateful.
Though I still would not choose a life touched by tumors, almost five years after neurosurgery, I am grateful for so many gifts in my life, gifts that I recognize more now than I did before my tumors.
Like my other inspirations, Jenny has a great spirit and a delightful sense of humor. One night when we were in college, I called her on the phone for emotional support. She lived in a dorm on another part of campus, about a ten-minute walk away, and she said she’d be right over with a cup of tea.
When she hadn’t shown up after an hour, I started to worry, but Jenny finally arrived, a mug of cold tea in her hand. She had miscounted her steps as she was walking in the dark and turned off a path into a tree. She had long hair and got tangled in the tree; when she finally extricated herself, she couldn’t figure out how to reorient herself. The cute boys on the porch who watched her wrestle with the tree helped her to point her toes in the direction of my dorm.
She laughed hilariously as she told me this story. Then she apologized that my tea was cold. I laughed, too. Her sense of humor helped me to gain some perspective on my own troubles.
Little Brother Matt asked me recently how my spirit has remained so strong in the days with these tumors and my disabilities. I have puzzled about this strength of spirit myself. Where did this spirit come from?
Today's sermon, titled "Dayenu", from Hebrew meaning, "It would have been enough..." made me think about gratitude and its role in facing life-changing struggles.
Our minister cited Brian McLaren's book Naked Spirituality: A Life with God in Twelve Simple Words (the book's about 80,000 words...so maybe those twelve words aren't so simple).
McLaren posits that gratitude may be our greatest road to happiness. He also tells of a time when he experienced insomnia and took that time to picture all that he was thankful for. I gather that gratitude helped with his insomnia.
My primary emotional response since the brain tumor 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, wonder in the world's extravagant beauty and a faith that cradles me and gives me hope.
Jenny came to visit after my surgery, and she told me that one day I might be grateful for my tumor. I inferred that she is grateful for her diabetes, and I admire her wisdom, but at the time I was not yet grateful.
Though I still would not choose a life touched by tumors, almost five years after neurosurgery, I am grateful for so many gifts in my life, gifts that I recognize more now than I did before my tumors.
Like my other inspirations, Jenny has a great spirit and a delightful sense of humor. One night when we were in college, I called her on the phone for emotional support. She lived in a dorm on another part of campus, about a ten-minute walk away, and she said she’d be right over with a cup of tea.
When she hadn’t shown up after an hour, I started to worry, but Jenny finally arrived, a mug of cold tea in her hand. She had miscounted her steps as she was walking in the dark and turned off a path into a tree. She had long hair and got tangled in the tree; when she finally extricated herself, she couldn’t figure out how to reorient herself. The cute boys on the porch who watched her wrestle with the tree helped her to point her toes in the direction of my dorm.
She laughed hilariously as she told me this story. Then she apologized that my tea was cold. I laughed, too. Her sense of humor helped me to gain some perspective on my own troubles.
Little Brother Matt asked me recently how my spirit has remained so strong in the days with these tumors and my disabilities. I have puzzled about this strength of spirit myself. Where did this spirit come from?
Today's sermon, titled "Dayenu", from Hebrew meaning, "It would have been enough..." made me think about gratitude and its role in facing life-changing struggles.
Our minister cited Brian McLaren's book Naked Spirituality: A Life with God in Twelve Simple Words (the book's about 80,000 words...so maybe those twelve words aren't so simple).
McLaren posits that gratitude may be our greatest road to happiness. He also tells of a time when he experienced insomnia and took that time to picture all that he was thankful for. I gather that gratitude helped with his insomnia.
My primary emotional response since the brain tumor 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, wonder in the world's extravagant beauty and a faith that cradles me and gives me hope.
The closing of Wordsworth's "Intimations of Immortality" reminds me of the miracle that remains, of the joy in living even in--and maybe especially in--times of loss, the power of natural beauty to overwhelm me with a sense of this miracle that is living. Wordsworth writes,
The innocent brightness of a new-born Day
Is lovely yet; The clouds that gather round the setting sun
Do take a sober colouring from an eye
That hath kept watch o'er man's mortality;
Another race hath been, and other palms are won.
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.
Perhaps I have found strength in this gratitude. My life has changed, and I am grateful for the life I had and for the life I now have.
The innocent brightness of a new-born Day
Is lovely yet; The clouds that gather round the setting sun
Do take a sober colouring from an eye
That hath kept watch o'er man's mortality;
Another race hath been, and other palms are won.
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.
Perhaps I have found strength in this gratitude. My life has changed, and I am grateful for the life I had and for the life I now have.
I am grateful for you, too. Thanks for being here. Mary
Wednesday, March 14, 2012
March 13, 1964
On the day I was born, Mom’s forty-five minute public bus ride to Grady Hospital in Atlanta must have been uncomfortable as she rode to give me birth. (She was nine months pregnant and thought she was having intestinal distress.)
I hear the hours of labor were no luxury cruise either. (Carol Burnett once compared giving birth to blowing a bowling ball out of a nostril.)
I was born on the thirteenth floor of Grady hospital’s White wing on Friday, March 13, 1964, so I have always considered thirteen my lucky number. For me, being born was lucky.
My parents, because they were White, took the front entrance while African-Americans took a back entrance into the hospital. President Johnson signed “The Civil Rights Act of 1964” that June, and though racial integration comes slowly in the South, I’m pretty sure that little White babies and little Black babies can now lie in cribs next to one another. How strange the separation of the babies seems now.
I am the first child of two first children, so in my first years, my parents and I are a young family of type-A personalities: perfectionists, anxious about success, planners committed to a plan. We control our destinies. It is our responsibility to be good and to do good in the world.
When I was born, Dad was a 27 year-old pediatric intern in the Air Force, and Mom was 22 years old, an army nurse released from her duties because she was pregnant.
The first thing my dad said when he saw me was, "She's a beautiful girl. With a big nose." You will be relieved to know that I have grown into my nose over the last 47 years. In fact, now my nose is remarkably small.
Lots of other things have changed over the years, too. I'm taller and wider than I was then. I have a larger vocabulary. Though we didn't know it, I had a brain tumor then. I don't now.
Here's to this lucky life!
Mary
I hear the hours of labor were no luxury cruise either. (Carol Burnett once compared giving birth to blowing a bowling ball out of a nostril.)
I was born on the thirteenth floor of Grady hospital’s White wing on Friday, March 13, 1964, so I have always considered thirteen my lucky number. For me, being born was lucky.
My parents, because they were White, took the front entrance while African-Americans took a back entrance into the hospital. President Johnson signed “The Civil Rights Act of 1964” that June, and though racial integration comes slowly in the South, I’m pretty sure that little White babies and little Black babies can now lie in cribs next to one another. How strange the separation of the babies seems now.
I am the first child of two first children, so in my first years, my parents and I are a young family of type-A personalities: perfectionists, anxious about success, planners committed to a plan. We control our destinies. It is our responsibility to be good and to do good in the world.
When I was born, Dad was a 27 year-old pediatric intern in the Air Force, and Mom was 22 years old, an army nurse released from her duties because she was pregnant.
The first thing my dad said when he saw me was, "She's a beautiful girl. With a big nose." You will be relieved to know that I have grown into my nose over the last 47 years. In fact, now my nose is remarkably small.
Lots of other things have changed over the years, too. I'm taller and wider than I was then. I have a larger vocabulary. Though we didn't know it, I had a brain tumor then. I don't now.
Here's to this lucky life!
Mary
Sunday, March 11, 2012
Strength of Spirit
"Nurture strength of spirit to shield you in sudden misfortune." Max Erhmann, "Desiderata"
Little Brother Matt asked me yesterday how my spirit has stayed so strong through these brain tumors. I do not know.
If I did know, I would bottle it and sell it for a very low price so that anyone could afford it. I would call it "Strength of Spirit." I don't know what would be in it: maybe banana, orange juice, plain non-fat yogurt, faith, and magic.
I asked Ann last night why she thinks I have had such a strong spirit. "I don't know," she said, "but I've been surprised. You've been stronger dealing with these brain tumors than you used to be when you had the flu."
Before my tumors, when I got sick, I channeled my Dad. When he gets sick, he lies in bed and moans. He used to have a bell by the bed to summon Mom when he wanted something.
Once, when he was lying in bed moaning, he wanted some Sprite with some ice in it, so he rang the bell and asked Mom for his Sprite with ice. She nodded and delivered it to him. A minute after she left, he rang the bell again. "Could you bring me a cold wet washcloth to put on my forehead?"
She delivered the washcloth and placed it gently on his feveish forehead. Then she ripped the clapper from the bell.
Yep, I used to channel Dad. Now, I channel my Grandmother Matthews.
My maternal grandmother grew up in a poor Southern farming family during the depression. Her mother died when grandmother was five years old. Her aunt hanged herself from the rafters in the family barn when grandmother was a child. Her beloved "Papa," who sold the family cow so that grandmother could have a winter coat, died when grandmother was a teenager. Grandmother was the second of four children and put her siblings through college, though she wasn't able to attend college herself.
Grandmom was tough, and she had no patience for softness. Whenever my granddad was doing one of his favorite things, like watching Westerns, playing horseshoes, or eatin' a good t'mater, she would holler at him, "Robert!" She did not drawl. She yelled quickly, the way you might yell to a frog, "Ribbit!"
Perhaps with these tumors, I have channeled my Grandmother Matthews. Like her, I am a survivor, but I don't yell so much.
Maybe I would call that solution, "Grandmother Matthews." Like me, Matt carries her name, though I am named for her first name and he for her last. He named his oldest son for her maiden name, Hayden.
Her name and her spirit run deep and wide in our family. We have her to draw on. She's a guardian angel for us.
Little Brother Matt asked me yesterday how my spirit has stayed so strong through these brain tumors. I do not know.
If I did know, I would bottle it and sell it for a very low price so that anyone could afford it. I would call it "Strength of Spirit." I don't know what would be in it: maybe banana, orange juice, plain non-fat yogurt, faith, and magic.
I asked Ann last night why she thinks I have had such a strong spirit. "I don't know," she said, "but I've been surprised. You've been stronger dealing with these brain tumors than you used to be when you had the flu."
Before my tumors, when I got sick, I channeled my Dad. When he gets sick, he lies in bed and moans. He used to have a bell by the bed to summon Mom when he wanted something.
Once, when he was lying in bed moaning, he wanted some Sprite with some ice in it, so he rang the bell and asked Mom for his Sprite with ice. She nodded and delivered it to him. A minute after she left, he rang the bell again. "Could you bring me a cold wet washcloth to put on my forehead?"
She delivered the washcloth and placed it gently on his feveish forehead. Then she ripped the clapper from the bell.
Yep, I used to channel Dad. Now, I channel my Grandmother Matthews.
My maternal grandmother grew up in a poor Southern farming family during the depression. Her mother died when grandmother was five years old. Her aunt hanged herself from the rafters in the family barn when grandmother was a child. Her beloved "Papa," who sold the family cow so that grandmother could have a winter coat, died when grandmother was a teenager. Grandmother was the second of four children and put her siblings through college, though she wasn't able to attend college herself.
Grandmom was tough, and she had no patience for softness. Whenever my granddad was doing one of his favorite things, like watching Westerns, playing horseshoes, or eatin' a good t'mater, she would holler at him, "Robert!" She did not drawl. She yelled quickly, the way you might yell to a frog, "Ribbit!"
Perhaps with these tumors, I have channeled my Grandmother Matthews. Like her, I am a survivor, but I don't yell so much.
Maybe I would call that solution, "Grandmother Matthews." Like me, Matt carries her name, though I am named for her first name and he for her last. He named his oldest son for her maiden name, Hayden.
Her name and her spirit run deep and wide in our family. We have her to draw on. She's a guardian angel for us.
Wednesday, March 7, 2012
Ependymoma Awareness Day: April 1, 2012
My brain tumors were rare. They're called "ependymomas," and not much is known about them.
They are slow-growing tumors that appear more often in children than in adults. In children, they are more likely to develop in the fourth ventrical of the brain (that's where mine were...always a child at brain). In adults they are more likely to appear in the spine. Cells can travel through the spinal fluid, sort of like dandelions spreading their seedy tufts, so tumors can spread or reappear in other places of the brain and along the spine where spinal fluid flows.
Their danger lies in where they grow. Both of my ependymomas, for example, grew in the fourth ventrical of my brain, a kind of holding tank for spinal fluid before it exits the brain's water system and enters the spine. When I was diagnosed, my first tumor was the size of a plum and was growing into my brainstem. Had it grown large enough to cover my fourth ventrical, I would have had hydrocephalus, a swelling of the brain due to too much water. (Hydrocephalus was common among European royalty in the 19th century due to inbreeding. This supports my theory that I am royal...and no, Dad, I do not mean a royal pain.)
These tumors are classified by a grading system. (I've always hated grades.) Grade 1 tumors are the least likely to spread or return. Some doctors do not call them cancers. Grade 2 tumors are more likely to spread than Grade 1 tumors, but less likely than Grade 3 tumors. (My tumors were grade 2). Some doctors do not call these tumors cancers either. Grade 3 tumors are the most likely to spread or recur. Everyone calls them cancerous. I think I have all of this right. This much is known.
Much is not known, however. No one knows why this disease occurs. There is even disagreement about whether this tumor that can spread and return is officially a cancer or not. There is no understanding about why the tumor can sometimes be seen in multiple family members or neighbors. Ependymomas are probably multiple diseases under the umbrella term "ependymoma," but we don't know that yet, either.
This lack of information impacts those of us with ependymomas. It affects treatment options, life expectancy, and disabilities resulting from the tumors and treatments. It affects whether people with ependymomas can get life insurance.
Clarity on the cancer classification is important. Funding for research designated for cancer research cannot currently go to ependymoma research because the World Health Organization does not classify it as a cancer. More research is needed to support this classification. Circular, yes.
Clarity on the cancer classification is important. Funding for research designated for cancer research cannot currently go to ependymoma research because the World Health Organization does not classify it as a cancer. More research is needed to support this classification. Circular, yes.
People with ependymomas and our advocates are working to get more support for research on the disease. The Collaborative Ependymoma Research Network (CERN) is a research group working to apply more resources toward understanding this disease. This year, they are initiating "Ependymoma Awareness Day."
For more information about ependymomas and CERN, go to their new video called “Advancing Patient Care; Working for A Cure”. www.cern-foundation.org
They are also promoting awareness through the symbol of a butterfly. They explain, "We’d like to start with the butterfly symbol: The butterfly is delicate and beautiful; hence it was chosen to represent ependymoma as it symbolizes rebirth and hope."
The symbol's a stretch. I'm pretty sure thast they don't have an English major on their staff. I'm guessing they rather intend that the butterfly is a symbol of ependymoma research, as the research may provide rebirth and hope. The tumor does not. Or if it does, it provides hope and rebirth in the same way that a heart attack or death might.
The foundation is more articulate about its other plans: "There will be a mass butterfly release on April 19, 2012 (with a rain date for April 20) that will coincide with a gathering of researchers who are studying ependymoma and working to develop a cure. The butterfly release will be posted to the internet so that patients, families and supporters around the world can participate and share in this moving event!
To participate in the inaugural Ependymoma Awareness Day, we encourage you to purchase a butterfly to memorialize a loved one, or simply to demonstrate the need to create greater awareness of this poorly understood disease. To purchase a butterfly (or several butterflies!) please visit the CERN Foundation website at www.cernfoundation.org ."
You may also promote awareness by wearing an Ependymoma Awareness Lapel Pin! These colorful die-cast metal pins feature the ependymoma awareness butterfly graphic and can be proudly worn to show your support of our cause everyday! To obtain your lapel pin, click here."
I think I'll wear a pin and offer to help them with their thinking about symbols. Who says an English major isn't practical?
Mary
Saturday, February 11, 2012
The Red Zone
Today, Ann and I are celebrating in the Brain Tumor Red Zone. Wednesday's MRI, my six-month check-up, showed a stable brain (no guffaws, please), meaning that I have no new tumor. Yea!
The most common time for this tumor to regrow is in the first three years after one is removed. This is year two, so the tumor is still within the ten yard line, but it hasn't scored yet, and it only has one down to go.
I'm hoping it doesn't even get a field goal.
Now, on from football season to basketball season...
The most common time for this tumor to regrow is in the first three years after one is removed. This is year two, so the tumor is still within the ten yard line, but it hasn't scored yet, and it only has one down to go.
I'm hoping it doesn't even get a field goal.
Now, on from football season to basketball season...
Thursday, October 27, 2011
Aging
"What great for the heart is great for the brain." -- the poet Kabir
"How old is old?" my mother asked my ten year-old self. I stood in the middle of our 1970s kitchen--white floor with an indented squiggle design, black and white cabinets, red countertops. After some thought, I answered with confidence, "Sixteen."
My oldest niece Isabella turned old this week: she's sweet sixteen, and since she's aging, I'm dedicating this entry on self-care to her. She's gonna love it.
Yesterday, I attended my in-person brain tumor support group (I also belong to an online ependymoma support group. I need a lot of support.) A Virginia Mason hospital neurologist, Dr. Nancy Isenburg, gave a talk called, "Healthy Aging with Cancer" to open the meeting.
Though the title was about cancer and the talk focused specifically on brain cancer, much of the talk was really about healthy living and healthy aging (which I guess is really the same thing.)
Dr. Isenburg not only quoted a couple of poets (which wins her great credibility points in my book), but also shared some helpful information about living well, focusing especially on diet and exercise.
Though her talk was quite good, she didn't recommend ice-cream. She did recommend walnuts, which I figure is a recommendation for an ice-cream sundae as long as it has walnuts on it. It's better that way anyway. I think the cherry does not have a lot of vitamins anymore and is therefore optional. Chocolate syrup is must. So is whipped cream. But I digress...
In addition to walnuts, Dr. Isenburg recommended other elements of a Mediterranean diet: olives (yuck), olive oil, red wine (I think she said lots of it...oh no, that was "a little"), fish, and fruits (so I guess you should eat that cherry on your ice-cream sundae after all) and veggies.
These foods stimulate growth of the hypocampus, which is in charge of memory and shrinks with age. (Yes, your brain is shrinking.) The bigget benefit of exercise, she said, is metacognition. Not becoming depressed, or addressing depression, is also a big bene.
Though your brain does shrink with age, recent studies show that the brain does continue to produce new brain cells throughout our lives. This is good news.
For exercise, Dr. Isenburg recommended walking at least three times each week for at least 45 minutes each time. Dancing to music (no, Mom, watching "Dancing with the Stars" does not count) and juggling are especially good for you.
Brother Matt, get off of your bike from time to time and juggle. You'll be an excellent old man before you know it.
No, Sister Jen. Sorry. Juggling four kids' schedules does not count. Especially since one's a boarding school. Juggling bon-bons only counts if you throw them in their air.
A healthy heart, Dr. Isenburg said, reduces the risk of dementia, reducing the risk of Alzheiner's by half if you exercise 30 minutes a day. (2000 international units of vitamin D each day help this, too.) Fish, she said, is good, too (and it's good for lowering cholesterol and managing ADHD. It should therefore be on every school lunch tray, but I don't think those fried strips will count.)
Fat, Dr. Isenburg emphasized, is good for the brain. I brightened, thinking about my ice-cream sundae, and then she clarified that it needed to be certain kinds of fat: coconut oil and avacado oil are really good. Use peanut oil or coconut oil for stir fry.
All in all, it's pretty good news and follows common sense. Eat well and exercise. And drink a little red wine. And dance.
I heard recently from a blogger who's a veteran with cancer, and he thinks a lot about health issues with cancer. You can access his site at http://www.mesothelioma.com/blog/
"How old is old?" my mother asked my ten year-old self. I stood in the middle of our 1970s kitchen--white floor with an indented squiggle design, black and white cabinets, red countertops. After some thought, I answered with confidence, "Sixteen."
My oldest niece Isabella turned old this week: she's sweet sixteen, and since she's aging, I'm dedicating this entry on self-care to her. She's gonna love it.
Yesterday, I attended my in-person brain tumor support group (I also belong to an online ependymoma support group. I need a lot of support.) A Virginia Mason hospital neurologist, Dr. Nancy Isenburg, gave a talk called, "Healthy Aging with Cancer" to open the meeting.
Though the title was about cancer and the talk focused specifically on brain cancer, much of the talk was really about healthy living and healthy aging (which I guess is really the same thing.)
Dr. Isenburg not only quoted a couple of poets (which wins her great credibility points in my book), but also shared some helpful information about living well, focusing especially on diet and exercise.
Though her talk was quite good, she didn't recommend ice-cream. She did recommend walnuts, which I figure is a recommendation for an ice-cream sundae as long as it has walnuts on it. It's better that way anyway. I think the cherry does not have a lot of vitamins anymore and is therefore optional. Chocolate syrup is must. So is whipped cream. But I digress...
In addition to walnuts, Dr. Isenburg recommended other elements of a Mediterranean diet: olives (yuck), olive oil, red wine (I think she said lots of it...oh no, that was "a little"), fish, and fruits (so I guess you should eat that cherry on your ice-cream sundae after all) and veggies.
These foods stimulate growth of the hypocampus, which is in charge of memory and shrinks with age. (Yes, your brain is shrinking.) The bigget benefit of exercise, she said, is metacognition. Not becoming depressed, or addressing depression, is also a big bene.
Though your brain does shrink with age, recent studies show that the brain does continue to produce new brain cells throughout our lives. This is good news.
For exercise, Dr. Isenburg recommended walking at least three times each week for at least 45 minutes each time. Dancing to music (no, Mom, watching "Dancing with the Stars" does not count) and juggling are especially good for you.
Brother Matt, get off of your bike from time to time and juggle. You'll be an excellent old man before you know it.
No, Sister Jen. Sorry. Juggling four kids' schedules does not count. Especially since one's a boarding school. Juggling bon-bons only counts if you throw them in their air.
A healthy heart, Dr. Isenburg said, reduces the risk of dementia, reducing the risk of Alzheiner's by half if you exercise 30 minutes a day. (2000 international units of vitamin D each day help this, too.) Fish, she said, is good, too (and it's good for lowering cholesterol and managing ADHD. It should therefore be on every school lunch tray, but I don't think those fried strips will count.)
Fat, Dr. Isenburg emphasized, is good for the brain. I brightened, thinking about my ice-cream sundae, and then she clarified that it needed to be certain kinds of fat: coconut oil and avacado oil are really good. Use peanut oil or coconut oil for stir fry.
All in all, it's pretty good news and follows common sense. Eat well and exercise. And drink a little red wine. And dance.
I heard recently from a blogger who's a veteran with cancer, and he thinks a lot about health issues with cancer. You can access his site at http://www.mesothelioma.com/blog/
Sunday, October 23, 2011
Living Backwards
"Now ordinary people are born forwards in time, if you understand what I mean, and nearly everything in the world goes forward too. This makes it quite easy for the ordinary people to live. . . . But I unfortunately was born at the wrong end of time, and I have to live backwards from in front, while surrounded by a lot of people who live forwards from behind."
- Merlyn in T.H. White's Once and Future King
--Wordsworth, "Ode: Intimations of Immortality"
Like Merlyn, I seem to be living backwards in time. It seems that many others believe, like the poet William Wordsworth, that their youth was the time when they were most connected to a divine spirit, to the center of their true selves.
That was the message of Pastor Jim's sermon today, a message that echoed Wordsworth's mullings in his "Ode: Intimimations of Immortality."
As Jim talked about having felt more whole, more connected to our dreams in our youth, heads nodded, indicating that for some of those with greying hairs in our community, life has moved them away from their true selves. There seems to be a melancholy about this loss.
Though I like Jim a lot and like to encourage him in his preaching, today I could not nod my head. Life for me has gotten better, not worse, through the years.
"Children," he said, "seem closer to God." Heads nodded. I think I heard a sigh.
I was happy as a child (at least until middle school.) I had fun. I loved the swings, and I discovered with awe that bricks, when rubbed together, make sand.
I do not believe that as a child I had a clear vision of who I might be, so there was no vision to shatter. I did have a vision of a lovely life, but I did not necessarily envision that that lovely life would be mine. I bit my lower lip and wondered what life I might have.
Now I know. In my life, there has been some loss, especially through these tumors. I can no longer run after a soccer ball or read a passing billboard sign. I can no longer make it through the day without at least a couple of naps.
More abundant for me, however, has been the grace in living a lovely life. I got to be a high school teacher and witness genius and kindness and hope. I have visited places like Lalibella, Ethiopia, and Guarjila, El Salvador, places I could not have imagined from the cul-de-sac of my suburban youth.
I get to live my life with a woman who loves me and with whom I feel whole. I get to wonder at fall colors, spring roses, and frozen berries in the early snow fall. I get to read poetry and nod my head, "Yes."
In living backwards, I grow into my naivete, a wonder in the world, a joy in every day living. I grow into my Yes.
- Merlyn in T.H. White's Once and Future King
| Our birth is but a sleep and a forgetting: | |
| The Soul that rises with us, our life's Star, | 60 |
| Hath had elsewhere its setting, | |
| And cometh from afar: | |
| Not in entire forgetfulness, | |
| And not in utter nakedness, | |
| But trailing clouds of glory do we come | 65 |
| From God, who is our home: | |
| Heaven lies about us in our infancy! | |
| Shades of the prison-house begin to close | |
| Upon the growing Boy, | |
| But he beholds the light, and whence it flows, | 70 |
| He sees it in his joy; | |
| The Youth, who daily farther from the east | |
| Must travel, still is Nature's priest, | |
| And by the vision splendid | |
| Is on his way attended; | 75 |
| At length the Man perceives it die away, | |
| And fade into the light of common day. |
Like Merlyn, I seem to be living backwards in time. It seems that many others believe, like the poet William Wordsworth, that their youth was the time when they were most connected to a divine spirit, to the center of their true selves.
That was the message of Pastor Jim's sermon today, a message that echoed Wordsworth's mullings in his "Ode: Intimimations of Immortality."
As Jim talked about having felt more whole, more connected to our dreams in our youth, heads nodded, indicating that for some of those with greying hairs in our community, life has moved them away from their true selves. There seems to be a melancholy about this loss.
Though I like Jim a lot and like to encourage him in his preaching, today I could not nod my head. Life for me has gotten better, not worse, through the years.
"Children," he said, "seem closer to God." Heads nodded. I think I heard a sigh.
I was happy as a child (at least until middle school.) I had fun. I loved the swings, and I discovered with awe that bricks, when rubbed together, make sand.
I do not believe that as a child I had a clear vision of who I might be, so there was no vision to shatter. I did have a vision of a lovely life, but I did not necessarily envision that that lovely life would be mine. I bit my lower lip and wondered what life I might have.
Now I know. In my life, there has been some loss, especially through these tumors. I can no longer run after a soccer ball or read a passing billboard sign. I can no longer make it through the day without at least a couple of naps.
More abundant for me, however, has been the grace in living a lovely life. I got to be a high school teacher and witness genius and kindness and hope. I have visited places like Lalibella, Ethiopia, and Guarjila, El Salvador, places I could not have imagined from the cul-de-sac of my suburban youth.
I get to live my life with a woman who loves me and with whom I feel whole. I get to wonder at fall colors, spring roses, and frozen berries in the early snow fall. I get to read poetry and nod my head, "Yes."
In living backwards, I grow into my naivete, a wonder in the world, a joy in every day living. I grow into my Yes.
Thursday, September 8, 2011
Yoga Month
"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure." --Marianne Williamson
September is yoga month. To celebrate, I'm returning to yoga instruction for the first time since brain surgery. I'm working with Cyndi, an instructor at Samarya Yoga Studio who specializes in working with people with chronic conditions.
I feel good about the studio. Samarya is Sanskrit for "community" and the studio is a non-profit organization committed to serving underserved populations. They count people with brain injury as underserved.
Today was my first session, where Cyndi and I introduced ourselves and did a little stretching and balance work. No homework yet. That comes next week.
Yea!
September is yoga month. To celebrate, I'm returning to yoga instruction for the first time since brain surgery. I'm working with Cyndi, an instructor at Samarya Yoga Studio who specializes in working with people with chronic conditions.
I feel good about the studio. Samarya is Sanskrit for "community" and the studio is a non-profit organization committed to serving underserved populations. They count people with brain injury as underserved.
Today was my first session, where Cyndi and I introduced ourselves and did a little stretching and balance work. No homework yet. That comes next week.
Yea!
Wednesday, August 24, 2011
The Talker and The Reader Growing Up
This summer when we saw our nephews Willie and Hayden at the beach, we were especially surprised by how much they've grown up since last year. Though they've just moved one year, from ten year old to eleven, they seem to have aged out of childhood and into early adolescence.
They were constant companions this summer. It's fun to see their friendship developing.
“What are birds' wings made of?” That's my sister's youngest son, Willie, when he was three years old. He's always asked the most amusing questions. He's a talker.
This summer when I played Scrabble with Willie and his older brother Jack, Willie decided that it would be better if we didn't keep score for him, so that he could just learn to play. He talked aloud to himself the whole time: "OMG is a word now!" and "I could do 'BIG E' (my dad's nickname.)
Like his siblings and his father, Willie loves tennis. Sister Jen says that when Willie plays tennis, he talks to himself the whole time. She quoted him: "Okay, Willie, I'm going to say this one time and one time only. No double faults!"
I wonder if he listens to himself.
Willie's cousin Hayden is my brother's oldest. He is blond, blue-eyed and beautiful. He is a big fan. Last summer, even though all of his cousins love the Red Sox, Hayden wore his NY Yankees hat the whole time he was at the beach with all of us in North Carolina. For the World Cup, he bravely cheered on the Netherlands while the rest of us cheered for Spain. That takes spunk.
I suppose he'll Scrabble royalty before long.
They were constant companions this summer. It's fun to see their friendship developing.
“What are birds' wings made of?” That's my sister's youngest son, Willie, when he was three years old. He's always asked the most amusing questions. He's a talker.
He's always been a fun one to watch. When he was small, he would crawl into my lap when we played board games with his older siblings. I lost significant years with him when I had my tumors, which is hard, but he's too old to climb into my lap anymore anyway.
Last year, on the way to our wedding, Willie lost his favorite quarter, so Ann and I sent him a new Canadian quarter when he and his family left. He wrote us the first thank you note we've ever received from any of our nieces and nephews: “Thank you for giving me what I really wanted.”
On the drive from New York to the North Carolina beach last year, Willie said he didn't like carrots, and--bored with the drive--his mother, my Sister Jen, told him she had been putting carrots in his cereal. When he doubted her, she said that she had been bleaching them and cutting them into cereal shapes for years. He was flummoxed. “That seems weird, but I know my mom wouldn't lie to me.” Such trust, even after the tooth fairy betrayal. Last year, on the way to our wedding, Willie lost his favorite quarter, so Ann and I sent him a new Canadian quarter when he and his family left. He wrote us the first thank you note we've ever received from any of our nieces and nephews: “Thank you for giving me what I really wanted.”
This summer when I played Scrabble with Willie and his older brother Jack, Willie decided that it would be better if we didn't keep score for him, so that he could just learn to play. He talked aloud to himself the whole time: "OMG is a word now!" and "I could do 'BIG E' (my dad's nickname.)
Like his siblings and his father, Willie loves tennis. Sister Jen says that when Willie plays tennis, he talks to himself the whole time. She quoted him: "Okay, Willie, I'm going to say this one time and one time only. No double faults!"
I wonder if he listens to himself.
Willie's cousin Hayden is my brother's oldest. He is blond, blue-eyed and beautiful. He is a big fan. Last summer, even though all of his cousins love the Red Sox, Hayden wore his NY Yankees hat the whole time he was at the beach with all of us in North Carolina. For the World Cup, he bravely cheered on the Netherlands while the rest of us cheered for Spain. That takes spunk.
When Hayden and his younger sister Lucie were looking at old pictures a few years ago, they saw one of the two of them together when they were younger. In the photograph, Hayden’s young arm was wrapped affectionately around little Lucie. Hayden said to Lucie, “See, Lucie. I used to like you.”
Hayden’s always got his nose in a book, a characteristic of his mother and his aunts and now of his father. Saturday, August 6, 2011
For Partners and Caregivers
My partner Ann has been a tremendous support for me. Her life has changed, as mine has, so I wondered what supports have been important to her. It was interesting to me to interview her about this because, though we have discussed these questions along the way, in the interview we both focused on her needs for a more extended time than we usually did, so I learned new things about her experiences. My interview with her follows:
What advice would you give partners of people with life-changing conditions like brain tumors?
Realize that you aren't the one with the brain tumor, that your part is to be supportive. The person with the health issue has to figure out how to deal with it. Just be supportive but know that you are not in charge.
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.
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.
What advice would you give partners of people with life-changing conditions like brain tumors?
Realize that you aren't the one with the brain tumor, that your part is to be supportive. The person with the health issue has to figure out how to deal with it. Just be supportive but know that you are not in charge.
Go to doctors' appointments with your partner. I went so that I could hear the news myself and so that I wouldn't have to ask you a lot of questions. I also went so that we would have two people listening and getting the information. And I went to be supportive. I wanted to hear the news first hand from the doctors and to meet the doctors.
Look for the good things you and your partner can share, instead of just trying to do things like you did before, even if it's really different from how you spent time before.Give yourself time and permission to grieve what you've lost—or really how your life has changed. For me it was important to talk with a therapist I trusted.
It is a challenge for me to allow myself to do some things that my partner can't do anymore. That's hard for me. It's still hard for me to do things I know you would like to do and you can't do. What's helped?
The thing that's been most helpful has been you because you've taken your tumors and disabilities on and decided to make the best of it, and you have encouraged me to go for a hike with someone or do other things you'd like to do.Friends who have checked in with how you're doing also ask how I'm doing.
Working helps me. It's something I'm really interested in that takes me away from home responsibilities and gives me a different focus. That's always been good for me.
What's been hardest?
My partner moving from a full-time playmate to a part-time playmate and the fact that we can't do things together that we used to be able to do [have been hard.]"The hardest thing is figuring out how to stay in the present, especially with the second tumor, and not get sunk by wondering what will happen in the future. But I think we've gotten closer going through this.
Tuesday, May 24, 2011
Peas in a Pod
Having tumors is a lot like spending a year in federal prison. That's what I surmised from reading Piper Kerman's excellent memoir, Orange is the New Black.
Both Piper Kerman and I found that friends and family were key to maintaining a sense of self and through our ordeals we recognized peeps that we had not recognized before. (Hers were fellow inmates while mine are fellow weebles).
The two of us were frustrated by a lack of control in our lives: she because of barbed wire and wardens and me because of balance and vision complications.
For us both, it was rejuvenating and yet difficult to get away into nature: at the prison, they didn't do a lot of day hikes, and hiking over long and rough terrain is pretty impossible for me now. We share with this difficulty a sense, sometimes, of being closed in, though her sense of being closed in may be more literal than mine.
Both of us faced our challenges with an optimistic spirit that helped us through, and yoga helped us center and breathe restoratively.
We both learned that we could face a kind of darkness that we did not know we would have the fortitude to face.
She reached the end of her sentence, a changed person yet prison-free, and I, too reached the end of my tumors as the MRIs have since radiation last year declared me tumor-free.
Both of us found that our understanding of ourselves and our world changed because of the experience.
In both cases, we are glad for the grace of all we have learned and for the people we have come to know, but I don't either of us would choose the journey we had to take.
Both of us write about our experiences. Like me, she wrote a six-word story before writing a longer memoir.We are both writing in the memoir genre, though she is published and I am still writing.
There are of course many differences. She went to prison because she took a risk and got involved in a drug trafficking ring. My only risk, a significant one, was to be born. She regrets her risk. I do not regret mine.
Both Piper Kerman and I found that friends and family were key to maintaining a sense of self and through our ordeals we recognized peeps that we had not recognized before. (Hers were fellow inmates while mine are fellow weebles).
The two of us were frustrated by a lack of control in our lives: she because of barbed wire and wardens and me because of balance and vision complications.
For us both, it was rejuvenating and yet difficult to get away into nature: at the prison, they didn't do a lot of day hikes, and hiking over long and rough terrain is pretty impossible for me now. We share with this difficulty a sense, sometimes, of being closed in, though her sense of being closed in may be more literal than mine.
Both of us faced our challenges with an optimistic spirit that helped us through, and yoga helped us center and breathe restoratively.
We both learned that we could face a kind of darkness that we did not know we would have the fortitude to face.
She reached the end of her sentence, a changed person yet prison-free, and I, too reached the end of my tumors as the MRIs have since radiation last year declared me tumor-free.
Both of us found that our understanding of ourselves and our world changed because of the experience.
In both cases, we are glad for the grace of all we have learned and for the people we have come to know, but I don't either of us would choose the journey we had to take.
Both of us write about our experiences. Like me, she wrote a six-word story before writing a longer memoir.We are both writing in the memoir genre, though she is published and I am still writing.
There are of course many differences. She went to prison because she took a risk and got involved in a drug trafficking ring. My only risk, a significant one, was to be born. She regrets her risk. I do not regret mine.
Friday, April 29, 2011
Feeling Clever
Friday night, I woke Ann in the middle of the night as I was rummaging through my drawer. The noise woke her up, and I told her I was looking for my tape. She said she'd help me.
Thinking that I was Alice in Wonderland and had shrunk to the size of a cat, I slid to the bottom of the bed and attempted to curl up in order to get out of her way. Because I am really a somewhat long human, curling up was hard, but my imagination is stronger than my body, so I managed.
Ann slid to my side of the bed, kicked me only a little, and rummaged about in the drawer. Finally, she said to me, "You don't have tape. I have tape."
"Oh right," I said, and pointed my finger to the back of my lower teeth. "I want the thing that goes here."
Ann nodded and rummaged some more, emerging with my splint, a contraption that looks a lot like a retainer (meant to keep me from clinching my teeth in the night). She tossed the green case to me.
"No," I said to her, "that goes on my top teeth. I need the thing that goes here," and again I pointed at the back of my bottom teeth.
"What thing?"
I tried to think more clearly, and finally it dawned on me. I said, "I must be asleep."
"Oh God," Ann said, as she turned off the light and moved back to her side of the bed. I unwound like a slinky and slid back to my pillow, very cheerful and feeling clever that I had solved this conundrum.
Mary
Thinking that I was Alice in Wonderland and had shrunk to the size of a cat, I slid to the bottom of the bed and attempted to curl up in order to get out of her way. Because I am really a somewhat long human, curling up was hard, but my imagination is stronger than my body, so I managed.
Ann slid to my side of the bed, kicked me only a little, and rummaged about in the drawer. Finally, she said to me, "You don't have tape. I have tape."
"Oh right," I said, and pointed my finger to the back of my lower teeth. "I want the thing that goes here."
Ann nodded and rummaged some more, emerging with my splint, a contraption that looks a lot like a retainer (meant to keep me from clinching my teeth in the night). She tossed the green case to me.
"No," I said to her, "that goes on my top teeth. I need the thing that goes here," and again I pointed at the back of my bottom teeth.
"What thing?"
I tried to think more clearly, and finally it dawned on me. I said, "I must be asleep."
"Oh God," Ann said, as she turned off the light and moved back to her side of the bed. I unwound like a slinky and slid back to my pillow, very cheerful and feeling clever that I had solved this conundrum.
Mary
Tuesday, April 26, 2011
My Easter Story
As Ann finished reading aloud Patty Smith's Just Kids, Smith's memoir about her loving relationship with her soulmate, Robert Maplethorpe, I wiped a tear from under my right eye.
My tear surprised me. I wasn't surprised that I cried. The memoir and its close were moving. My right eye, however, has not teared since I had surgery four years ago. Right after surgery, I could not close my right eye all the way because of nerve damage, but I've regained a lot of control since then, so I've been able to close the eye for some time. Generally, however, the right eye does not water. If I cry a tear, my left eye usually sheds that tear.
At night, Ann puts an ointment in my eye so that it doesn't dry out too much, and during the day I use eye drops. I know that if my eyes dry out, they hurt, and I don't see very well. Thus, this tear feels hopeful to me.
I think of the Ocotillo, my favorite flowering desert plan, which looks like dead sticks buried in the dry desert sand, but in the spring, strange green leaves sprout from its woody stems and its ends bloom a surprising bright red. At a desert museum, I once encountered a sign in front of the ocotillo in its woody winter phase: "Dead or Alive?" Sometimes, as the poet Pablo Neruda writes so hopefully in "Keeping Quiet" (one of my favorite poems), "Perhaps the earth can teach us / as when everything seems dead / and later proves to be alive."
Spring is the time of so much rebirth. Maybe this single tear tells me not to give up where I have given up. Maybe this tear tells me that my nerves may yet come back to life.
I don't want to fool myself, but I don't want to miss signs of life, either. I wonder in what ways the world and I are coming back to life. I wonder if I am noticing.
(I've posted all of Neruda's poem below, so that you can love it, too.)
Mary
KEEPING QUIET -- Pablo Neruda
Now we will count to twelve
and we all keep quiet.
For once on the face of the earth,
let’s not speak in any language;
let’s stop for one second
and not move our arms so much.
It would be an exotic moment
without rush, without engines;
we would all be together
in a sudden strangeness.
Fisherman in the cold sea
would not harm whales
and the man gathering salt
would look at his hurt hands.
Those who prepare green wars,
wars with gas, wars with fire,
victories with no survivors
would put on clean clothes and
and walk about with their brothers
in the shade, doing nothing.
What I want should not be confused with
total inactivity.
Life is what it is about;
I want no truck with death.
If we were not so single-minded
about keeping our lives moving
and for once could do nothing
perhaps a huge silence
might interrupt this sadness
of never understanding ourselves
and threatening ourselves with death.
Perhaps the earth can teach us
as when everything seems dead
and later proves to be alive.
Now I’ll count up to twelve
and you keep quiet and I will go.
My tear surprised me. I wasn't surprised that I cried. The memoir and its close were moving. My right eye, however, has not teared since I had surgery four years ago. Right after surgery, I could not close my right eye all the way because of nerve damage, but I've regained a lot of control since then, so I've been able to close the eye for some time. Generally, however, the right eye does not water. If I cry a tear, my left eye usually sheds that tear.
At night, Ann puts an ointment in my eye so that it doesn't dry out too much, and during the day I use eye drops. I know that if my eyes dry out, they hurt, and I don't see very well. Thus, this tear feels hopeful to me.
I think of the Ocotillo, my favorite flowering desert plan, which looks like dead sticks buried in the dry desert sand, but in the spring, strange green leaves sprout from its woody stems and its ends bloom a surprising bright red. At a desert museum, I once encountered a sign in front of the ocotillo in its woody winter phase: "Dead or Alive?" Sometimes, as the poet Pablo Neruda writes so hopefully in "Keeping Quiet" (one of my favorite poems), "Perhaps the earth can teach us / as when everything seems dead / and later proves to be alive."
Spring is the time of so much rebirth. Maybe this single tear tells me not to give up where I have given up. Maybe this tear tells me that my nerves may yet come back to life.
I don't want to fool myself, but I don't want to miss signs of life, either. I wonder in what ways the world and I are coming back to life. I wonder if I am noticing.
(I've posted all of Neruda's poem below, so that you can love it, too.)
Mary
KEEPING QUIET -- Pablo Neruda
Now we will count to twelve
and we all keep quiet.
For once on the face of the earth,
let’s not speak in any language;
let’s stop for one second
and not move our arms so much.
It would be an exotic moment
without rush, without engines;
we would all be together
in a sudden strangeness.
Fisherman in the cold sea
would not harm whales
and the man gathering salt
would look at his hurt hands.
Those who prepare green wars,
wars with gas, wars with fire,
victories with no survivors
would put on clean clothes and
and walk about with their brothers
in the shade, doing nothing.
What I want should not be confused with
total inactivity.
Life is what it is about;
I want no truck with death.
If we were not so single-minded
about keeping our lives moving
and for once could do nothing
perhaps a huge silence
might interrupt this sadness
of never understanding ourselves
and threatening ourselves with death.
Perhaps the earth can teach us
as when everything seems dead
and later proves to be alive.
Now I’ll count up to twelve
and you keep quiet and I will go.
Sunday, April 17, 2011
Post Traumatic Surgery Disorder
For years after the September 11, 2001 attacks, I felt a literal sinking in my heart, a deep tightness in my chest, every time the news reported a grand catastrophe. On that day in 2001, I was away from home, staying at the John Hancock building in Boston. I was there for a week's training for my new job, and our organization's meeting was disrupted by Police who swept us out of the room in order to set up security plans for Boston. It was rumored that accomplices to the attacks were holed up in the building across the street, though this turned out to be untrue. We were alternately cordoned in the building and evacuated. I paced anxiously in my room, gasped for air as if there were a great weight compressing my lungs, and sobbed until I heard from my New York family members that everyone was safe.
Less than a week later I returned to my home in Seattle on one of the first coast-to-coast flights after the attacks. My section was filled with quiet pilots who scribbled frenetically on napkins and whispered in the aisles. In the terminal, two flight attendants yelled to one another from a football field's length away, ran to one another, embraced and sobbed. It was an intense time, and for years afterwards I felt that tightness in my chest again whenever there was a large scale disaster. This response, it seems to me, is the right one.
Since brain surgery, however, I respond more emotionally to the tragedies of indviduals. When U.S. representative Gabriel Giffords was shot in the head and six others were killed with her earlier this year, I followed her recovery news as if I knew her. I still do, though she's disappeared from the headlines.
A couple of weeks ago, the local news reported the death of Corporal Roger Scherf, Jr., a soldier who had been the lone survivor of a roadside bomb that killed the other eight in the vehicle in Afghanistan. Ironically, Corporal Scherf died in the U.S. in a car accident, and I think about all of the rehabilitation and personal grief that he must have experienced before his death and the pain that his family must be experiencing now.
I also heard on the news an interview with Linsey Addario, a New York Times photographer who was kidnapped with three colleagues by Gaddafi's forces and finally released after some brutal treatment.
I know that all of us will die, that this is the way the world is, and that I will one day be in the toll. Mostly, I take this in stride and feel with amazement the power of this world's beauty, the grace of the gift of being in this world. In response to such individual stories, however, I experience the great sadness of someone else's death, and remember again that one day, the death will be mine. That feels sad, too.
I am mostly upbeat, and I wonder if sometimes that's irritating to others who have experienced life-changing disease or other great tragedies but this sadness keeps me grounded. I like Annabella's matter-of-fact approach to the sadness in her toast: Here's to those of us who are left.
In her poem, "One Summer Day," Mary Oliver asks, "What will you do with your one wild and precious life?" Maybe it's brain tumors or moving into my late forties (yikes), but I think daily about this question now, and maybe I'm mostly upbeat because I feel so lucky about this one life that I'm getting to live: a solid partner (today, we celebrate 16 years of living together); loving and fun friends; a supportive spiritual community; the opportunity to work with high school students and their teachers; the on-going chance for new adventures, new ways of seeing.
Here's to those of us who are left. Here's to being here. Here's to Ann. Mary
Less than a week later I returned to my home in Seattle on one of the first coast-to-coast flights after the attacks. My section was filled with quiet pilots who scribbled frenetically on napkins and whispered in the aisles. In the terminal, two flight attendants yelled to one another from a football field's length away, ran to one another, embraced and sobbed. It was an intense time, and for years afterwards I felt that tightness in my chest again whenever there was a large scale disaster. This response, it seems to me, is the right one.
Since brain surgery, however, I respond more emotionally to the tragedies of indviduals. When U.S. representative Gabriel Giffords was shot in the head and six others were killed with her earlier this year, I followed her recovery news as if I knew her. I still do, though she's disappeared from the headlines.
A couple of weeks ago, the local news reported the death of Corporal Roger Scherf, Jr., a soldier who had been the lone survivor of a roadside bomb that killed the other eight in the vehicle in Afghanistan. Ironically, Corporal Scherf died in the U.S. in a car accident, and I think about all of the rehabilitation and personal grief that he must have experienced before his death and the pain that his family must be experiencing now.
I also heard on the news an interview with Linsey Addario, a New York Times photographer who was kidnapped with three colleagues by Gaddafi's forces and finally released after some brutal treatment.
I know that all of us will die, that this is the way the world is, and that I will one day be in the toll. Mostly, I take this in stride and feel with amazement the power of this world's beauty, the grace of the gift of being in this world. In response to such individual stories, however, I experience the great sadness of someone else's death, and remember again that one day, the death will be mine. That feels sad, too.
I am mostly upbeat, and I wonder if sometimes that's irritating to others who have experienced life-changing disease or other great tragedies but this sadness keeps me grounded. I like Annabella's matter-of-fact approach to the sadness in her toast: Here's to those of us who are left.
In her poem, "One Summer Day," Mary Oliver asks, "What will you do with your one wild and precious life?" Maybe it's brain tumors or moving into my late forties (yikes), but I think daily about this question now, and maybe I'm mostly upbeat because I feel so lucky about this one life that I'm getting to live: a solid partner (today, we celebrate 16 years of living together); loving and fun friends; a supportive spiritual community; the opportunity to work with high school students and their teachers; the on-going chance for new adventures, new ways of seeing.
Here's to those of us who are left. Here's to being here. Here's to Ann. Mary
Monday, March 21, 2011
ABCs of my Brain Tumors
I've been to see so many doctors in so many departments about these tumors and their side-effects that I wanted to see if I could fill a whole alphabet.
A is for Amy, my Radiology Nurse Practitioner
B is for Dr. B, the chiropractor who informed me, after seeing MRIs of my neck, "It's chaos in there!"
C is for Dr. C, my eye-surgeon
D is for doctors whose names I don't recall, lots of them
E is for Ependymoma, a brain tumor, rare in adults, that caused me and all these nice people a lot of trouble
F: Dr. F, my childhood pediatrician
G:: Dr. G, the name children call Dr. C because her last name is too hard to pronouce, even in letters
H: Dr. H, my radiologist who loves maps and historical architecture
I: Irina, the physical therapist who taught me to walk again.
J: Joey, the rehabilitation nurse who lectured me on my need to get used to asking for help
K: "kick-a$$" the way my friend, a doctor, Robbie described my neurosurgeon
L: Lumbar puncture, the procedure where a doctor stuck a long needle in my spine and took some fluid to test for tumor cells in the spine (no tumor cells in the spine, but the procedure "leaked" and caused an awful headache. I went to the emergency room for migraine treatment and contracted the swine flu.)
M: Dr. M, the doctor who broke the bad news to me, "You have a brain tumor."
N: nurses, whose names I don't recall, lots of them
O: the round shape I can no longer make with my mouth
P: Dr. P, the natuopath who used magic to heal me from my food allergies
Q: Quiet, what my dad could not be in the recovery room or anywhere else
R: Dr. R, my neurosurgeon
S: Dr. S, the naturopath who prescribed Adre-Cor to restimilate my adrenaline systerm
T: Tumor: The thing in my brain that kept all these doctors busy
U: University hospital, where a second tumor board split along lines of whether I should have radiation or surgery for my second tumor
V: Virginia Mason Hospital, where surgeons plucked a big nasty tumor from my brain
W: Why, a word more commonly asked than answered
X: X-rays that revealed that I had pneumonia as I was beginning radiation
Y: Yuri, the technician who desinged a mask to hold me in place during radiation
Z: Zubrod Performance Scale Performance status from zero (fully active) to four (completely disabled) that expresses a person’s ability to function and perform normal daily activities. (http://www.abta.org/Dictionary/V_-_Z/135)
Now you try. Mary
A is for Amy, my Radiology Nurse Practitioner
B is for Dr. B, the chiropractor who informed me, after seeing MRIs of my neck, "It's chaos in there!"
C is for Dr. C, my eye-surgeon
D is for doctors whose names I don't recall, lots of them
E is for Ependymoma, a brain tumor, rare in adults, that caused me and all these nice people a lot of trouble
F: Dr. F, my childhood pediatrician
G:: Dr. G, the name children call Dr. C because her last name is too hard to pronouce, even in letters
H: Dr. H, my radiologist who loves maps and historical architecture
I: Irina, the physical therapist who taught me to walk again.
J: Joey, the rehabilitation nurse who lectured me on my need to get used to asking for help
K: "kick-a$$" the way my friend, a doctor, Robbie described my neurosurgeon
L: Lumbar puncture, the procedure where a doctor stuck a long needle in my spine and took some fluid to test for tumor cells in the spine (no tumor cells in the spine, but the procedure "leaked" and caused an awful headache. I went to the emergency room for migraine treatment and contracted the swine flu.)
M: Dr. M, the doctor who broke the bad news to me, "You have a brain tumor."
N: nurses, whose names I don't recall, lots of them
O: the round shape I can no longer make with my mouth
P: Dr. P, the natuopath who used magic to heal me from my food allergies
Q: Quiet, what my dad could not be in the recovery room or anywhere else
R: Dr. R, my neurosurgeon
S: Dr. S, the naturopath who prescribed Adre-Cor to restimilate my adrenaline systerm
T: Tumor: The thing in my brain that kept all these doctors busy
U: University hospital, where a second tumor board split along lines of whether I should have radiation or surgery for my second tumor
V: Virginia Mason Hospital, where surgeons plucked a big nasty tumor from my brain
W: Why, a word more commonly asked than answered
X: X-rays that revealed that I had pneumonia as I was beginning radiation
Y: Yuri, the technician who desinged a mask to hold me in place during radiation
Z: Zubrod Performance Scale Performance status from zero (fully active) to four (completely disabled) that expresses a person’s ability to function and perform normal daily activities. (http://www.abta.org/Dictionary/V_-_Z/135)
Now you try. Mary
Wednesday, March 2, 2011
Lecturous
Because my dad has often given me unasked for advice, and because we lived by the "Do unto others..." rule, I thought for a while that he wanted me to advise him as well. When I returned from a tough day in second grade, I reported to my father that my friends and I had been guessing our fathers' ages and that my friends thought he was old, maybe even forty. I recommended Grecian Hair Formula. Now that we would both take forty as a compliment, his hair is bright white. I guess he assumed that I, living by that golden rule, wanted him to ignore my advice as I so often ignored his.
When Sister Jenn was in junior high school and Dad was advising her, she asked him, "Why do you have to be so lecturous?
When Dad and I travelled to Alaska with elder hostel (he was elder and I was hostile), he arrived at the bus that was to take us into Denali National Park wearing a plaid shirt and khaki pants. This outfit seemed sartorially inappropriate for a hike to me, and I said to him, "You look like you're dressed for the movies." Later that week, he went into town and paid more for a poop-colored pair of zip-off hiking britches than he had ever paid for work slacks.
Last weekend, on our weekly phone call, Dad begn to tell me a new theory about women: "What I've noticed about women is..." I interrupted him, encouraging him to pause and to think because his sentences that begin this way gernerally lead him to the dog house, and he always seems surprisedto find himself there. Ignoring my admonition, he continued.
I cannot blame him for ignoring my cautions. I have often ignored his.
For all this, I have in many ways been inspired by his life and sought to emulate him. Ralph Waldo Emerson's often quoted “Letters and Social Aims” works in Dad's favor: “Don’t say things. What you are stands over you the while, and thunders so that I cannot hear what you say to the contrary.” Dad's deeds speak loudly of a commitment to the value of every individual, to the importance of saying thank you, and to the belief that we are here to make the world a better place.
Dad had two overtime jobs for most of his work life: one a job that paid and the other a job of social conscience. I, too, have often overworked, though since my surgery some would argue that I overnap, and like him I have worked for social justice. His work was on behalf of children, many of whom lived in poverty, without health insurance. All children, he argued as President of the American Academy of Pediattrics, have the right to health care. Following in his footsteps, I have worked on behalf of underserved children, many of them poor and immigrants to the United States, though my work has been in the educational arena.
When I was in junior high school, I went with Dad to the small town where he grew up to pick up a carload of children that he was sponsoring to go to summer camp. Like my father, I sponsor children to go to camp, though the camp I sponsor is for older children and is called "college."
When I was in high school, my dad gave the sermon at the church in the small town where he grew up. We, his children, counted the number of times he said, "Um," but I also heard his message. He thanked each person in that church who had helped to raise him. Like my dad, I seek to say thank you to those many people who have made my life better.
After attending a conservative church in Wichita Falls, Texas, when Dad was in the Air Force during the Vietmam War, Dad determined that he would never again attend a church where everyone was more conservative than he. Sensing that he had much to learn from liberals, he and my mom chose a liberal Southern Baptist church to attend and in which to raise their children. I am certainly more liberal than my father, so for me understanding another perspective means respecting and trying to understand those who are more conservative than I am (that's most people.) I am not so fully committed to this broad-mindedness as he was, as my current church is clearly on the left as was the church of my youth, but I do seek to enter into friendships with those whose backgrounds and experiences, including those who are conservative, give them different perspectives than mine.
In this time of tumors, I have relied heavily on Dad for advice and support, and I have also relied on him to know when not to give me advice. I am sure that this has been hard for him. More important than his advice, however, has been his constant support and love, his dedication to helping me live a full life. Just as Dad has sought new venues for play and passion in his retirement, I seek new venues for work and play as I learn to live fully with these darn disbilities. Dad and I are perhaps both old dogs learning new tricks, though he is older. Today is his birthday, so he is even further over that hill.
Happy birthday, Dad. I love you. Mary
When Sister Jenn was in junior high school and Dad was advising her, she asked him, "Why do you have to be so lecturous?
When Dad and I travelled to Alaska with elder hostel (he was elder and I was hostile), he arrived at the bus that was to take us into Denali National Park wearing a plaid shirt and khaki pants. This outfit seemed sartorially inappropriate for a hike to me, and I said to him, "You look like you're dressed for the movies." Later that week, he went into town and paid more for a poop-colored pair of zip-off hiking britches than he had ever paid for work slacks.
Last weekend, on our weekly phone call, Dad begn to tell me a new theory about women: "What I've noticed about women is..." I interrupted him, encouraging him to pause and to think because his sentences that begin this way gernerally lead him to the dog house, and he always seems surprisedto find himself there. Ignoring my admonition, he continued.
I cannot blame him for ignoring my cautions. I have often ignored his.
For all this, I have in many ways been inspired by his life and sought to emulate him. Ralph Waldo Emerson's often quoted “Letters and Social Aims” works in Dad's favor: “Don’t say things. What you are stands over you the while, and thunders so that I cannot hear what you say to the contrary.” Dad's deeds speak loudly of a commitment to the value of every individual, to the importance of saying thank you, and to the belief that we are here to make the world a better place.
Dad had two overtime jobs for most of his work life: one a job that paid and the other a job of social conscience. I, too, have often overworked, though since my surgery some would argue that I overnap, and like him I have worked for social justice. His work was on behalf of children, many of whom lived in poverty, without health insurance. All children, he argued as President of the American Academy of Pediattrics, have the right to health care. Following in his footsteps, I have worked on behalf of underserved children, many of them poor and immigrants to the United States, though my work has been in the educational arena.
When I was in junior high school, I went with Dad to the small town where he grew up to pick up a carload of children that he was sponsoring to go to summer camp. Like my father, I sponsor children to go to camp, though the camp I sponsor is for older children and is called "college."
When I was in high school, my dad gave the sermon at the church in the small town where he grew up. We, his children, counted the number of times he said, "Um," but I also heard his message. He thanked each person in that church who had helped to raise him. Like my dad, I seek to say thank you to those many people who have made my life better.
After attending a conservative church in Wichita Falls, Texas, when Dad was in the Air Force during the Vietmam War, Dad determined that he would never again attend a church where everyone was more conservative than he. Sensing that he had much to learn from liberals, he and my mom chose a liberal Southern Baptist church to attend and in which to raise their children. I am certainly more liberal than my father, so for me understanding another perspective means respecting and trying to understand those who are more conservative than I am (that's most people.) I am not so fully committed to this broad-mindedness as he was, as my current church is clearly on the left as was the church of my youth, but I do seek to enter into friendships with those whose backgrounds and experiences, including those who are conservative, give them different perspectives than mine.
In this time of tumors, I have relied heavily on Dad for advice and support, and I have also relied on him to know when not to give me advice. I am sure that this has been hard for him. More important than his advice, however, has been his constant support and love, his dedication to helping me live a full life. Just as Dad has sought new venues for play and passion in his retirement, I seek new venues for work and play as I learn to live fully with these darn disbilities. Dad and I are perhaps both old dogs learning new tricks, though he is older. Today is his birthday, so he is even further over that hill.
Happy birthday, Dad. I love you. Mary
Monday, February 21, 2011
Recalculating
My Auntie (pronounced "On'tee) Myra says that my dad had planned his life by the age of seven and that he has followed that plan for his life. Though I believe him when he tells me that he decided to become a doctor after he went face first through the car windshield as a teenager and the doctors put him, like Humpty Dumpty, back together again, I suspect there's a lot of truth to Auntie Myra's observation.
Dad is a planner. He succeeded in schools, went to Duke Medical School, married my mother ("the most beautiful woman he'd ever seen"), went to Wichita Falls, Texas, instead of Vietnam, and had three lovely children. He a had a successful pediatric practice, taught medical interns, lobbied for health care for all children, and became president of the American Academy of Pediatrics. All my life, he worked two more than full time jobs, and now that he's retired, I had been concerned that he might get bored, but retirement seems to have been part of the plan. He travels across the ocean and around the country to see his children and his grandchildren. On pretty days, he plays golf. On not-so-pretty days, he plays competitive bridge. He seems busy and seems to be having a great time.
I suppose having kids was part of Dad's plan but also challenged his life plan. He says that having kids keeps him humble. He also says, "It's hard to be humble when you're as great as I am."
I'm pretty sure that my decision to come out as a lesbian and my two brain tumors were not part of my dad's life plan. I have to give him credit, though. He's adjusted admirably to the challenges. He struggled mightily with both, but now he loves me and my partner, and he's been a great support to both of us throughout my treatments for brain tumors. Like the Access van direction-finder whose driver seldom heeds oral directions, my dad has recalculated.
For a long time, I followed what I believed was Dad's plan for me. I played Dad's sports, did homework like him, and went to his alma mater for college. I believed that he had a life plan for me, born before I was born, and that it was a good plan as it was crafted by someone who loved me and wanted the best for me, so I needed to follow that plan.
As I began to grow up, however, I began to deviate from that plan. First, I did not go to medical school though I believed that was part of his plan. I did not even become a lawyer or an engineer. Instead, I went into teaching high school English. Though I did not believe that teaching English was part of his plan for me, I did immediately find joy in the teaching profession and came to believe that sometimes I would need to deviate from his plan. This was my life, after all.
After high school, I dated two tall, dark, reasonably handsome and remarkably smart guys of good pedigree. This, too, was part of the plan. I was to marry one of them until death do us part. That part of the plan didn't work out. Seeking joy, I again deviated from Dad's plan for me, came out as a lesbian, and married the woman I love. Perhaps recalculating, finding my own plan instead of what I perceived to be my father's plan, was part of growing up.
My tumors have required me to recalculate again in so many ways. I now ride a trike instead of a bike. I read on my Kindle instead of on the page. I hike on level, paved paths with help.
Now in my work life I'm trying to follow in my father's footsteps again and again recalculate. Because of disabilities from tumors, I do not think that I can follow my earlier plan to be a public school administrator, and I do not think that I can continue along my teaching path.
In my work, I have recalculated once already since the tumors and have been a literacy coach, working with teachers who want my help improving their teaching practice. I love this job, as I get to work with teachers and their students in a way that I am now able and in a way that seems helpful to both teachers and students. Now, however, all of these budget cuts may leave me again needing to recalculate. This week I'm exploring how to publish and market my book and am also exploring the world of teaching English to adults, generally immigrants to the United States.
Much of my life since brain tumors--and much of this blog--has been about re-envisioning my life as it unfolds, about recalculating. My life has been about learning that I am not in control, and seeking the grace and the faith to live a life meaningful to me and to others by finding ways to live still in the joy that is life's miracle. My challenge, as I have attempted to relate it here, has been to see still the amazing beauty, the amazing grace, in the fragility of it all.
Though unlike wiser souls, I am still not grateful for these tumors, I am grateful for the compulsion to recalculate, for the gift of continuing to participate in this life, in this world, and for the grace of seeing now that, even as I must recalculate and must learn that I am not in control, still this is a beautiful world. Still, I strive to be happy.
As a teenager, like so many teenagers, I loved Max Ehrman's poem, the poem that exhorts us to "strive to be happy," and perhaps I sensed as a youth that the only possible plan is a plan of the spirit, a plan that Ehrman so gracefully penned. For years, the poem hung on the bulletin board of the desk where I never studied as I was growing up, then in my college dorm room, and then on the walls of my classrooms. I have pasted the poem below in case you do not know it.
The poem invites me to "go placidly amid the noise and haste," to "speak [my] truth quietly and clearly," to "be gentle with [my]self," to remember that I am "a child of the universe," and that "With all its sham, drudgery, and broken dreams, / it is still a beautiful world." For all the career planning that business gurus would have us do these days, it has been the love in my life and the poems of my life that have lead me in this time of great change, this time of recalculating.
Peace--Mary
Desiderata
-- by Max Ehrmann--
Go placidly amid the noise and the haste,
and remember what peace there may be in silence.
As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.
If you compare yourself with others,
you may become vain or bitter,
or always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.
Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.
With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.
Dad is a planner. He succeeded in schools, went to Duke Medical School, married my mother ("the most beautiful woman he'd ever seen"), went to Wichita Falls, Texas, instead of Vietnam, and had three lovely children. He a had a successful pediatric practice, taught medical interns, lobbied for health care for all children, and became president of the American Academy of Pediatrics. All my life, he worked two more than full time jobs, and now that he's retired, I had been concerned that he might get bored, but retirement seems to have been part of the plan. He travels across the ocean and around the country to see his children and his grandchildren. On pretty days, he plays golf. On not-so-pretty days, he plays competitive bridge. He seems busy and seems to be having a great time.
I suppose having kids was part of Dad's plan but also challenged his life plan. He says that having kids keeps him humble. He also says, "It's hard to be humble when you're as great as I am."
I'm pretty sure that my decision to come out as a lesbian and my two brain tumors were not part of my dad's life plan. I have to give him credit, though. He's adjusted admirably to the challenges. He struggled mightily with both, but now he loves me and my partner, and he's been a great support to both of us throughout my treatments for brain tumors. Like the Access van direction-finder whose driver seldom heeds oral directions, my dad has recalculated.
For a long time, I followed what I believed was Dad's plan for me. I played Dad's sports, did homework like him, and went to his alma mater for college. I believed that he had a life plan for me, born before I was born, and that it was a good plan as it was crafted by someone who loved me and wanted the best for me, so I needed to follow that plan.
As I began to grow up, however, I began to deviate from that plan. First, I did not go to medical school though I believed that was part of his plan. I did not even become a lawyer or an engineer. Instead, I went into teaching high school English. Though I did not believe that teaching English was part of his plan for me, I did immediately find joy in the teaching profession and came to believe that sometimes I would need to deviate from his plan. This was my life, after all.
After high school, I dated two tall, dark, reasonably handsome and remarkably smart guys of good pedigree. This, too, was part of the plan. I was to marry one of them until death do us part. That part of the plan didn't work out. Seeking joy, I again deviated from Dad's plan for me, came out as a lesbian, and married the woman I love. Perhaps recalculating, finding my own plan instead of what I perceived to be my father's plan, was part of growing up.
My tumors have required me to recalculate again in so many ways. I now ride a trike instead of a bike. I read on my Kindle instead of on the page. I hike on level, paved paths with help.
Now in my work life I'm trying to follow in my father's footsteps again and again recalculate. Because of disabilities from tumors, I do not think that I can follow my earlier plan to be a public school administrator, and I do not think that I can continue along my teaching path.
In my work, I have recalculated once already since the tumors and have been a literacy coach, working with teachers who want my help improving their teaching practice. I love this job, as I get to work with teachers and their students in a way that I am now able and in a way that seems helpful to both teachers and students. Now, however, all of these budget cuts may leave me again needing to recalculate. This week I'm exploring how to publish and market my book and am also exploring the world of teaching English to adults, generally immigrants to the United States.
Much of my life since brain tumors--and much of this blog--has been about re-envisioning my life as it unfolds, about recalculating. My life has been about learning that I am not in control, and seeking the grace and the faith to live a life meaningful to me and to others by finding ways to live still in the joy that is life's miracle. My challenge, as I have attempted to relate it here, has been to see still the amazing beauty, the amazing grace, in the fragility of it all.
Though unlike wiser souls, I am still not grateful for these tumors, I am grateful for the compulsion to recalculate, for the gift of continuing to participate in this life, in this world, and for the grace of seeing now that, even as I must recalculate and must learn that I am not in control, still this is a beautiful world. Still, I strive to be happy.
As a teenager, like so many teenagers, I loved Max Ehrman's poem, the poem that exhorts us to "strive to be happy," and perhaps I sensed as a youth that the only possible plan is a plan of the spirit, a plan that Ehrman so gracefully penned. For years, the poem hung on the bulletin board of the desk where I never studied as I was growing up, then in my college dorm room, and then on the walls of my classrooms. I have pasted the poem below in case you do not know it.
The poem invites me to "go placidly amid the noise and haste," to "speak [my] truth quietly and clearly," to "be gentle with [my]self," to remember that I am "a child of the universe," and that "With all its sham, drudgery, and broken dreams, / it is still a beautiful world." For all the career planning that business gurus would have us do these days, it has been the love in my life and the poems of my life that have lead me in this time of great change, this time of recalculating.
Peace--Mary
Desiderata
-- by Max Ehrmann--
Go placidly amid the noise and the haste,
and remember what peace there may be in silence.
As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.
If you compare yourself with others,
you may become vain or bitter,
or always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.
Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.
With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.
Thursday, February 17, 2011
Mary wept.
Ever since I saw that episode of "The Waltons" where kids had to memorize a Bible verse, and one slacker memorized John 11:35, "Jesus wept," I have loved this verse. Partly, probably, because it's one of the only Bible verses I can remember in its entirety.
I read in a commentary that in its original languages, this verse would not have been the shortest in the Bible. I also read that the Greek word for "wept" means to shed silent tears instead of earlier weeping, where the Greek work used means something closer to wailing (Jamieson-Fausset-Brown Bible Commentary cited at http://bible.cc/john/11-35.htm)
I can identify with the quietness of Jesus's tear. That's how I cry, too. Last Thursday, I cried. I was working with a talented teacher, Todd, and a challenging high school freshman class that I am getting to know, a group that I am quite fond of. Todd and I had planned together, and I was to start the day's lesson, modelling how to begin a lesson crisply. I know from watching these students on other days and from teaching them and similar groups of freshmen that directions need to be clear and crisp.
With my current disabilities, however, clear and crisp is hard. I have to concentrate in order to stand, and concentrate to look from the left to the right or, especially, to look from a page of writing up to a group of students. On this day, I just couldn't do it. I couldn't move crisply enough to keep them engaged. Once again, I couldn't do what I used to do.
Teacher Todd regained the responsibility of working with the group as a whole, and I worked with smaller groups. After the class, as always, Todd and I discussed what we had learned about the students, what we wondered, and what his next steps with these students might be. After that discussion, I confessed to him how hard it had been to re-experience what I cannot now do. It was in this moment of quiet reflection and confession that I wept.
A few weeks ago, at a naturopathic appointment about my tremors, the doctor asked me if I was experiencing chronic grief. According to my naturopath's tome, chronic grief can cause tremors. I wept then, too.
To understand my emotions a little better, I did a little bit (not a lot) of research on Elizabeth Kubler-Ross and David Kessler's Five Stages of Grief. Stage One: Denial. Stage Two: Anger. Stage Three: Bargaining. Stage Four: Depression. Stage Five: Acceptance.
I'm definitely not in denial, but I wonder if I'm experiencing all of the other stages of grief at once, or at least in rapid succession. For me, it seems, the process of grieving this loss is more like a washing machine than a conveyer-belt, more turbulent than tidy.
Mostly, I know that I am lucky to be alive and lucky to get to live this life. Sometimes, however, I am just mad, bargaining and unhappy about my disabilities. Having the tumors and their treatments was one thing, but the fun of all that is over now, and I'm ready to return to my days of teaching and running and looking straight ahead with two eyes.
Mary
I read in a commentary that in its original languages, this verse would not have been the shortest in the Bible. I also read that the Greek word for "wept" means to shed silent tears instead of earlier weeping, where the Greek work used means something closer to wailing (Jamieson-Fausset-Brown Bible Commentary cited at http://bible.cc/john/11-35.htm)
I can identify with the quietness of Jesus's tear. That's how I cry, too. Last Thursday, I cried. I was working with a talented teacher, Todd, and a challenging high school freshman class that I am getting to know, a group that I am quite fond of. Todd and I had planned together, and I was to start the day's lesson, modelling how to begin a lesson crisply. I know from watching these students on other days and from teaching them and similar groups of freshmen that directions need to be clear and crisp.
With my current disabilities, however, clear and crisp is hard. I have to concentrate in order to stand, and concentrate to look from the left to the right or, especially, to look from a page of writing up to a group of students. On this day, I just couldn't do it. I couldn't move crisply enough to keep them engaged. Once again, I couldn't do what I used to do.
Teacher Todd regained the responsibility of working with the group as a whole, and I worked with smaller groups. After the class, as always, Todd and I discussed what we had learned about the students, what we wondered, and what his next steps with these students might be. After that discussion, I confessed to him how hard it had been to re-experience what I cannot now do. It was in this moment of quiet reflection and confession that I wept.
A few weeks ago, at a naturopathic appointment about my tremors, the doctor asked me if I was experiencing chronic grief. According to my naturopath's tome, chronic grief can cause tremors. I wept then, too.
To understand my emotions a little better, I did a little bit (not a lot) of research on Elizabeth Kubler-Ross and David Kessler's Five Stages of Grief. Stage One: Denial. Stage Two: Anger. Stage Three: Bargaining. Stage Four: Depression. Stage Five: Acceptance.
I'm definitely not in denial, but I wonder if I'm experiencing all of the other stages of grief at once, or at least in rapid succession. For me, it seems, the process of grieving this loss is more like a washing machine than a conveyer-belt, more turbulent than tidy.
Mostly, I know that I am lucky to be alive and lucky to get to live this life. Sometimes, however, I am just mad, bargaining and unhappy about my disabilities. Having the tumors and their treatments was one thing, but the fun of all that is over now, and I'm ready to return to my days of teaching and running and looking straight ahead with two eyes.
Mary
Monday, February 14, 2011
More Tumor Humor
Bruce, our ependymoma support group leader, had more that was funny to say today:
I don't think the brain tumor affected me...You tell me...
I decide to water my garden.
As I turn on the hose in the driveway,
I look over at my car and decide it needs washing.
As I start toward the garage,
I notice mail on the porch table that
I brought up from the mail box earlier.
I decide to go through the mail before I wash the car.
I lay my car keys on the table,
put the junk mail in the garbage can under the table,
and notice that the can is full.
So, I decide to put the mail back
on the table and take out the garbage first.
But then I think,
since I'm going to be near the mailbox
when I take out the garbage anyway,
I may as well pay the bills first.
I take my check book off the table,
and see that there is only one check left.
My extra checks are in my desk in the study,
so I go inside the house to my desk where
I find the can of Coke I'd been drinking.
I'm going to look for my checks,
but first I need to push the Coke aside
so that I don't accidentally knock it over.
The Coke is getting warm,
and I decide to put it in the refrigerator to keep it cold.
As I head toward the kitchen with the Coke,
a vase of flowers on the counter
catches my eye--they need water.
I put the Coke on the counter and
discover my reading glasses that
I've been searching for all morning.
I decide I better put them back on my desk,
but first I'm going to water the flowers.
I set the glasses back down on the counter,
fill a container with water and suddenly spot the TV remote.
Someone left it on the kitchen table.
I realize that tonight when we go to watch TV,
I'll be looking for the remote,
but I won't remember that it's on the kitchen table,
so I decide to put it back in the den where it belongs,
but first I'll water the flowers.
I pour some water in the flowers,
but quite a bit of it spills on the floor.
So, I set the remote back on the table,
get some towels and wipe up the spill.
Then, I head down the hall trying to
remember what I was planning to do.
At the end of the day:
the car isn't washed
the bills aren't paid
there is a warm can of Coke sitting on the counter
the flowers don't have enough water,
there is still only one check in my check book,
I can't find the remote,
I can't find my glasses,
and I don't remember what I did with the car keys.
Then, when I try to figure out why nothing got done today,
I'm really baffled because I know I was busy all day,
and I'm really tired.
I realize this is a serious problem,
and I'll try to get some help for it,
but first I'll check my e-mail.
Bruce, 4th ventricle surgery & radiation, '95
Another member of the group, Steve, replied: When you find your car keys, please tell me where you found them. Maybe it will help me find mine. Steve, 4th ventricle nightmare
I don't think the brain tumor affected me...You tell me...
I decide to water my garden.
As I turn on the hose in the driveway,
I look over at my car and decide it needs washing.
As I start toward the garage,
I notice mail on the porch table that
I brought up from the mail box earlier.
I decide to go through the mail before I wash the car.
I lay my car keys on the table,
put the junk mail in the garbage can under the table,
and notice that the can is full.
So, I decide to put the mail back
on the table and take out the garbage first.
But then I think,
since I'm going to be near the mailbox
when I take out the garbage anyway,
I may as well pay the bills first.
I take my check book off the table,
and see that there is only one check left.
My extra checks are in my desk in the study,
so I go inside the house to my desk where
I find the can of Coke I'd been drinking.
I'm going to look for my checks,
but first I need to push the Coke aside
so that I don't accidentally knock it over.
The Coke is getting warm,
and I decide to put it in the refrigerator to keep it cold.
As I head toward the kitchen with the Coke,
a vase of flowers on the counter
catches my eye--they need water.
I put the Coke on the counter and
discover my reading glasses that
I've been searching for all morning.
I decide I better put them back on my desk,
but first I'm going to water the flowers.
I set the glasses back down on the counter,
fill a container with water and suddenly spot the TV remote.
Someone left it on the kitchen table.
I realize that tonight when we go to watch TV,
I'll be looking for the remote,
but I won't remember that it's on the kitchen table,
so I decide to put it back in the den where it belongs,
but first I'll water the flowers.
I pour some water in the flowers,
but quite a bit of it spills on the floor.
So, I set the remote back on the table,
get some towels and wipe up the spill.
Then, I head down the hall trying to
remember what I was planning to do.
At the end of the day:
the car isn't washed
the bills aren't paid
there is a warm can of Coke sitting on the counter
the flowers don't have enough water,
there is still only one check in my check book,
I can't find the remote,
I can't find my glasses,
and I don't remember what I did with the car keys.
Then, when I try to figure out why nothing got done today,
I'm really baffled because I know I was busy all day,
and I'm really tired.
I realize this is a serious problem,
and I'll try to get some help for it,
but first I'll check my e-mail.
Bruce, 4th ventricle surgery & radiation, '95
Another member of the group, Steve, replied: When you find your car keys, please tell me where you found them. Maybe it will help me find mine. Steve, 4th ventricle nightmare
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