Ependymoma Awareness Day--April 19, 2012

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.

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.

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.

I am grateful for you, too. Thanks for being here. Mary

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.

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

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

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.

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

The Quint of Luuuv

Ann's colleague Adina celerates  "the quint of love."  She pronounces it "luv" with an extended soft "u": "luuuuv." Since the this time period includes Martin Luther King, Jr.'s Birthday, President's Day (depending on the president), and Valentine's Day, the designation seems just right.

Unsure asbout what a quint might be? Is it A) an era: we had the quint of Bush and now we are in the quint of luuuv B) a metaphor from science fiction literature where time is a substance to be measured in "quints": It was a time of love, a quint of romance. C) (we all know C's the most common answer, so it won't be this): Is it a fifth of a school year, so that we have semesters, trimesters, quarters and quints D) Perhaps it's an age, as in the Quint of Acquarius or E) a very naughty word in Jamaican culture. The correct answers are C, a grading period which is a fifth of a school year, and E)  very naughty word in Jamaican culture. (Adina told me about the Jamaican meaning, and I confirmed it on the innernets.. I wonder if that's why their school, which has lots of students from Asian countries, has no students from Jamaica.) As a good reader, you can use your context clues to be assured that in this instance we are discussing a grading period.

In last Sunday's church service, the reading came from the sexy Song of Songs: "Strengthen me with raisins, refresh me with apples, for I am faint with love" (New International Version (©1984) cited on http://bible.cc/songs/2-5.htm). For sure, it must be the quint of love: The Bible tells me so, and so does Adina.

On the radio last week, I heard a remarkable love story, a husband's retelling of the joyous moments of his wife's last days. She was home from cancer treatments, weak, in a wheelchair, and unable to speak. The day before she died, he noticed again how beautiful she was, and he asked her to marry him again. Though weak, she kissed him vigorously and repeatedly on his cheek.

Last summer Ann and I got married in a commitment ceremony at our church. I had survived brain surgery for a tumor and could no longer walk or dance as I used to. I could no longer smile with both sides of my face. My eyes were somewhat crossed. I can no longer hike up mountains or travel in developing countries. Still, she said she loved me. Still, she spends her days with me. Still, she asked me to marry her.

We had a great time. We practiced dancing to Exile's "She's a Miracle" for weeks so that we could dance, and I would not fall. Our families and friends celebrated with us. We shared photos of our lives together: from hiking up Lalibellas's mountainsides to watching waves crash on North Carolina's shores: if you look closely you can see not only that I am affectionately holding Ann's arm, but that she is holding me up. We said our vows and our siblings made toasts.

On this Valentine's Day, as on all days, I am so thankful for all of the love in my life: for friends and family, an astonishing world, our communities of faith and fun and work, and especially for Ann. My heart is full, as is my life.

All my love. Mary

My Peeps

Years ago, my friend Rene tried to convince her partner Alex something about community health care for Latinas. Alex, Alejandra, is Chicana and replied, "No, Ren. I know my peeps." I wondered at the time who my peeps were: Southern expatriate lesbians?

Now I know. In some ways, I love to go to the hospitals because I see so many of my peeps there. If it weren't for the doctors, a visit to the hospital would be like a reunion of lots of relatives I"ve never known. My peeps are in wheelchairs. They walk with walkers and canes. They cover their coughs with cotton masks and have tubes in their arms (or wherever). Some are young, and many are old.

When a peep and I pass one another in the hallways, we generally nod to one another. Our nods mean, "Hey. I see you. I know part of your story, and you know part of mine. We have each been through something hard, and we have each experienced loss. We are doing the best we can right now."

In the basement of the hospital that I frequent, there is a long, narrow underground walkway from one building to another. The hall is tiled with those hospital white one square foot linoleum pieces and has low florescent lights. There are no windows. When I'm there, I feel like I'm escaping from East Berlin in the days of the wall. When there are two of us in this path heading towards one another, we have no choice but to watch one another's progress for a very long time. This watching is somewhat awkward, especially since I am very slow, and often the person walking towards me is, too, so we approach one another for what seems a very long time. One of us often attempts humor. Last week, the elderly man heading towards me said, "I hear they're putting in a speed limit." The humor is more an attempt to be friendly than funny. Friendly is important to me and my peeps. So is humor.

A few years ago, I worked at a school that had a program for students with severe disabilities, and my office was near their room, so I saw these students quite often. I was wearing a patch on one eye and walking with a walker at the time. One student, a boy named Jason, stopped each time he saw me and stared hard at my face. He was unable to communicate through speech, but sometimes he would try. Once, when I was walking with the principal and some others, Jason stopped to stare, his face a few inches from mine, and gently touched my face, moving aside my eye-patch. "Hurt," he said. I said, "Yes," and he continued to stare. The principal, who was clearly nervous about this, had him stop, and we went on our way. I explained to her that I thought the attention was appropriate, that it was possible that in all of his years of schooling he had not encountered another adult with disabilities and that he was reaching out to the one adult who might, in some small way, understand his life. We were peeps.

Tomorrow I'm going to the hospital. Supposedly, I'm going to see my neurologist because I've been having headaches, but really I'm going to see my peeps.

Mary

Three in a Million

I am one in 350,000. I really wanted to be one in a million, but it's 350,000. That's according to the doctor of someone in my ependymoma (a rare brain tumor) support group. According to that doctor, at age 50, one in 350,000 people have a brain ependymoma. An ependymoma, according to almost anyone, is 2.2 percent of all brain tumors.

Somehow, being three in a million just doesn't sound as special as I feel I am. I once heard a "This American Life" where a mathematician's girlfriend asked him if she was the only one in the world for him, and he replied that she's probably one in four hundred thousand. He thought that sounded good. She didn't. He needed a bit of the poet in his mathematical mind.

According to the 2010 census, 563,374 people reside in Seattle, where I live. Statistically, that means that two Seattle adults might have ependymomas, though with our quality hospitals, I suspect we may have a higher percentage here. I guess two in the whole city sounds a little more special than three in a million. I wonder if I've ever met that one other person. That would be unlikely.

A few years ago, I worked for an educational technology company, and an African-American friend of mine was sent to Maine for a sales jaunt. She said that as she pulled into a gas station to fill up, another customer, an African-American man, got out of his car at the same time. Two African-Americans at the same gas station in Maine. Probably as unlikely as two people in Seattle with ependymomas at the same coffee shop, though it was probably easier for them to recognize the unlikeliness than it would be for us, as I've never made an announcement in a public place: "Excuse me. Does anyone else here have an ependymoma?"

Accordng to the website "True Knowledge" (intriguing title), the population of Raleigh, NC, the city where David Sedaris and I grew up, is 402,589. That means that in Raleigh maybe I would be the only one in the city with an ependymoma. If I moved there, I wonder if it's more likely that there are two people with ependymomas or just one, since I would have increased Raleigh's population by the insigificant number of one, but I already know I have an ependymoma, so would it be likely that there would be two of us?

Somehow, I suspect this mathematical conundrum is like the "Let's Make a Deal" math problem. Do I stick with door number one or change to door number two? Stick with door number one. I'll stick with my ependymoma, thanks. Actually, I've already given it up. Even more complicated.

Special enough. Mary

My Dinner with Annabella

Last night my partner Ann and I had dinner with one of our favorite people, our neighbor Annabella.

When we, two professional white lesbians, moved into this neighborhood, which had been part of the rough and tumble central district (or "CD") since the 1960s, we were a little nervous. Once, soon after moving into the neighborhood, a motorist slowed down on Martin Luther King Way to roll down his window and holler out, "We don't want you here!" We weren't sure why he didn't want us here. There were so many possibilities: white, female and gay heading the list. Once in those early years a cab driver wanted to refuse to take us home because "that neighborhood is too dangerous." Another time, we came home to a sharpshooter in the yard: a felon who had stabbed a policeman was holed up in the crack house a couple of houses down. Adolescents in bouncing cars raced each other around the circle meant to slow them down. The neighborhood's not so interesting any more, but it was when we first moved here. That was 14 years ago.

Annabella made us feel welcome immediately. One of the neighborhood elders, she called to reply to an open house invitation: "Hi. I'm Annabella. I"m your neighbor. I drink beer." She still doesn't say good-bye when she hangs up. She just hangs up, and I know the phone call is over. We have been fast friends ever since that first phone call. Both she and I have slowed down a little: her ninety years have slowed her down (though she'll point out that she still looks good, and she does), and brain tumors and such have slowed me down. We still drink beer together.

Last night, when we'd each gotten our beer, Annabella, who has lost many of her friends to Alzheimer's and death recently, made a toast: "Here's to those of us who are left."

Annabella shared stories from her past, stories from a time and a culture I've never known. Raised in New Orleans by her mother, who was "One hundred percent Cherokee Indian" and was quick with a switch, Annabella came to Seattle at the beginning of the second world war. Her husband-to-be Brad sent her $13 to pay for her train trip to Seattle. Her mother used the money for their rent. He sent another $13, and again her mother used the money for the rent. The next time, he sent a train ticket, and Annabella headed to Seattle.

Soon after Annabella arrived in Seattle, Pearl Harbor was bombed, and Annabella became a riveter, like Rosie. She'll still show you her muscle. When mechanics needed someone strong, they'd call for "the Indian." Once, a machinist wasn't paying attention and came so close to her head with his saw that he sawed a part down the middle of her long hair. She was okay, but she was mad. She's a Catholic woman, but she can curse a blue streak, which she says she did then. She repeated herself last night for effect, and other diners looked over to make sure everything was okay; then smiled when they saw it was her. When the war was over, Annabella says that everyone else cheered, but she cried. She loved working.

She and Brad cleaned hotels at night, leaving their two young girls in the car, and they hosted poker games until they paid for their home here in the CD. Her cooking and her looks earned them a little extra at the poker table.

Now, at ninety, she still volunteers at the elementary school, which she has been doing for forty years. Every year she sells a dinner at the church auction to raise money for the school and serves about twenty people drinks and okra, jumbalaya and pie. Upsairs, the guests admire her hundreds of dolls and other antinques and sing, "God Bless America." Then everyone heads downstairs for dinner and their choice of pie: sweet potato or pecan among the four or five Southern offerings. Everyone gets a "lagniappe"as they leave, usually something like rubber gloves or a role of paper towels.

Annabella speaks her mind--loudly, since she doesn't hear too well--about race and politics, religion and foolishness. When she talks politics, she talks about Democrats and "those other ones." She and I don't see the world in the same way sometimes, but we've agreed not to talk about issues where we'll simply make one another mad. Sometimes she wades into rough waters, and I'll stop her to say, "Now you know we don't agree about that. You're not going to change my mind, and I'm not going to change yours. Why are you talking about it? Do you want to argue?" She just laughs and shrugs and gives me a high five.

When she's got a complaint, she'll share it and then she'll quote her mom: "If it's not one thing, it's two." That woman's got wisdom.

Annabella's neighbor, Mary

P. S. 21 Hocus Pocus Act Two

During hocus pocus (my name for the naturopathic allergy treatment I'm going through), my eating is severely curtailed. I can't eat or be within ten feet of the allergen or its relatives for 25 hours after treatment.

Yesterday I was treated for B complex, so for breakfast this morning I had rice with salt and pepper, and for lunch I'll have spaghetti noodles with salt and pepper. To drink: purified water. We put all five leaves in the table and sat at opposite ends so that Ann could eat something more hearty and still be in the same room. We looked kind of like Incrediboy and his sexy woman in The Incredibles. I have to avoid plants, flowers, and walking through the garden. Fortunately, no one sent me roses today like they usually do.

In the upcoming week, I'll be treated for sugar. Eating shouldn't be too bad, but I can't use my toothpaste. I ca't even go into a room with toothpaste. Fair warning.

Fortunately, I won't have to be treated for minerals. For 25 hours someone being treated for minerals can't eat meat, tofu, fish, chicken, vegetables, fruits, or grains to name a few things. They must wash their hair with purified water. I don't know if they can use soap or shampoo. Probably not.

A few weeks ago I was treated for egg allergies. I couldn't eat eggs or anything with eggs in them, and I couldn't eat or touch anything from the egg family, like chicken or feathers. Feather pillows were stacked in the back room: off-limits.

Last week I was treated for iron, which meant I had to wear gloves to hold onto our wrought-iron handrail, and I couldn't sit on our leather furniture or wear my leather coat, gloves, shoes or belts. Since I've lost so much weight, my britches were falling down all day: sagging, and not in that good way. I finally folded over the waistband to hold my britches up: geeky in an appropriately adult way.

These treatments, in combination with severe allergies to garlic, chocolate and cheddar, are for sure keeping my weight down. If you're interested in this diet, I think you'll need to have the piggy flu, pneumonia, and radiation simultaneously. Then you'll need to avoid essential foods like chocolate and cheetos and anything you can get off the menu in any restaurant. It'll be a blast.

The thing is, this hocus pocus seems to be working. If you're interested in finding out about it, other people call it NAET. I've forgtten what it stands for. Maybe Naturopathic Allergen Eradication Treatment.

Even if you don't have allergies, you could just choose some basic ingredient like salt or water to imagine you can't eat or drink. Avoid them. Tell waiters and waitresses in restaurants that you'll get violently ill if you ingest either one of them. You'll get to talk to the chef. They may make you something special, or they may feed you very dry, saltless food. I feel pretty sure you'll lose weight.

I hear that people who publish diets that become fads make a lot of money. Perhaps this diet beginning with piggy flu, pneumonia and radiation could fund my retirement. That would be yet another benefit of brain tumors. Those benefits just keep piling up.

P. S. 22 Tumor Humor

The online ependymoma support group that I belong to is generally not a humorous place to be, but every now and then it is.

Today, our leader Bruce posted a note about his anxiety about new symptoms and an upcoming MRI. One well-wisher reminded him not to do any welding. This may be an inside joke.  "Are you a welder?" is a question the technicians always ask before they'll do an MRI. Apparently, welders tend to get metal fragments in their heads, and those of us getting MRIs can't even wear a bra with clasps or a pair of earrings. (Somehow I suspect those limitations don't affect Bruce.) Metal in the head is definitely against the rules. I"m not sure if we'd catch on fire, but maybe. I"m imagining alluminum foil in the microwave.

Bruce is also struggling with his memory, so today he told this story: "Friday was my 28th wedding anniversary (Thanks!). I bought and presented my wife with a nice gold heart shaped necklace with small diamonds.She thanked me for it - then told me I had given her the same thing three years ago!!! I'll probably give her the same thing next year."

Another writer, Amy, is also having memory issues, so she's going  to make herself some shirts in honor of her short term memory issue, one shirt for every day:

1) And you are...?
2) Don't ask. I won't know.
3) Someone tell me how to get home so I can write it on my hand.
4) Wait. What?
5) It was so nice. I'll do it twice.
6) Let's see 2009, 2010...?
7) Don't tell me you forget things, too, whomever you are.

Amy also posted that she is now taking four new medications, noting, "That's annoying." I think of fleas and yippee attack dogs as annoying. I've never thought of my brain tumors or their inconveniences as annoying. I like that: a much more understated description than "tragic" or "terrifying."

In case you don't know and would like to know, tumors being "annoying is an example of a litote, the opposite of hyperbole. That's the sort of thing us English majors know. (If you were an English major, or if you are an English teacher, you will also understand the grammar humor here.) In fact, any time there's an error in this blog, it's really a joke that you just don't get yet. Sort of like Joyce's missing passages in Ulysses. Actually, just like that.

Mary, right?

P. S. 29 Rough Year

In one of my favorite scenes in the movie Arthur, the young and somewhat drunken Arthur enters the study of his powerful, wealthy father-in-law not-to-be and waits in a dark, manly study. Mounted heads of elk and moose adorn the walls, and Arthur says, almost to himself, "Rough room." Then, as if he's been rude to the moose head hovering over him, he says almost apologetically, "I guess I don't have to tell you that."

In my community, it's been a rough year: one broken clavicle, one punctured lung, seven broken ribs (clavicle, lung and ribs all belong to our neighbor Andrew), one broken hip, three separations and two divorces, three new tumors, three deaths; six women have moved their mothers into assisted living, and an older friend of ours has moved in and out of assisted living. Rough year.

It has in some ways been a year of loss. Kari, Katie F., Pea, my new friend Toby and I have lost a combined 160 pounds. I, along with others being treated for tumors or just those who are aging , lost a bit of hair. My eyes are more crossed; my balance is worse; I have a new tremor in my left hand and a different one in my right hand. There has been the grief in loss of people we love and ways of being in the world that are no longer. There is with me a new sense of vulnerability.

My naturopath told me yesterday that I seem to be one of those "the glass is half-full" people. Actually, I may be more along the lines of "my cup runneth over but the water source may run dry any minute now." In this time of loss and in the, perhaps ironic, sense of gratitude that I've had through this whole experience with tumors, I have found a soulmate in the Romantic poet William Wordsworth.

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.

In this new year, I'll resolve to keep crying about mean flowers. You do too.

Mary

P.S. 19 Giving Thanks

Ann and I spent Thanksgiving with "The Nitwits" in a kind of cross between "Eight is Enough" and The Big Chill. Initiated, as I understand, by three college friends from Iowa, the group--from Seattle and Chicago and Santa Fe and San Francisco and so forth, has been celebrating their changing lives together for about 25 years.

This year there were 22 of us around a large table for dinner in The Big House (on Big House Road) in Cle Ellem, Washington, just down the road from Rosyln, where "Northern Exposure" was filmed. Most folks were in their fifties, I'd guess, though Bucky and his friend David are teenagers. At 46 years of age, I got called "Kid" a few times. I liked that.

After our drive across a snowy pass, we arrived at The Big House, and I went directly to sit by the fire, where fortunately Pat noticed that I was smoking, or at least my leather coat was. Now my coat's left shoulder has that wrinkled newspaper look that I love. Character. Ann will make me get a new one--also called a Christmas gift. She doesn't like the fact that the lining is coming out or that the back seam has unravelled either.

For the weekend, as far as I could tell, there weren't really assignments, but everyone pitched in to help. There was always someone eating and someone cleaning, always a group playing a game like Dominoes or Taboo and someone pretending to read on the couch, generally someone was in the hottub and someone was on a walk in the winter wonderland. I was doing an experiment and not taking my adrenelaine stimulant, so I was generally napping, but I don't think I was the only one.

Between naps, my new friend Toby and I talked a lot about life after tumors and surgeries and radiation. He had chemo, too, which I didn't have. My first tumor, in the fourth ventrical of my brain, was diagosed about three years ago and my second, also in my fourth ventrical, was diagnosed last year. Toby's first tumor, in his throat, was diagnosed two years ago, and, about six weeks after surgery, he had fifteen more throat tumors. That's a significant tumor to throat ratio. I haven't talked with anyone else who has had a similar experience, so his openness to me was a real gift.

Toby looks great. If you didn't know he had been so sick, you wouldn't guess it. He's running a couple of miles a day now and looks fit. His longish hair is pulled into a ponytail and his skin has the look of someone who has spent some days at his ranch riding horses. We've had some similar struggles, though. He talked about how tired he has been, about losing sixty pounds, about hand tremors, and about learning about what he called "the new normal."

This Thanksgiving, I am as always grateful for my partner and family, long-time friends, my work, my spiritual community and my online community (viewers like you). I am also thankful for new friends and the new normal, whatever it may be.

Mary

P. S. 15 World Enough and Time

Yesterday I visited two colleagues' office and was overwhelmed by the amount of stuff.

Lest I sound like a neatnick, which would be ironic, I should confess that when I was a child, neighborhood children and cousins always wanted to visit my bedroom and my siblings' rooms, as other children with less patient mothers were so impressed by our mess. Not only could a person not see the floor or any other surface in our rooms, but one would have to dig through layers to find a surface.  When I got into bed, I would simply crawl in under the covers and all the stuff. As a college freshman, I (and my roommate Angelique) kept the room so delightfully messy that our boyfriends broke into the room when we were out of town and straightened it up for Valentime's Day. That was love. As an adult, when I was chair for the Humanities department in a new school, I kept so many textbooks and papers (yet to be graded, I'm sure) on the floor that the office became a part of  the unofficial tour. Guests came to marvel at the mess.

In the home where I grew up, my father's study  is as cluttered as my bedroom was when I was a child. My sister and brother  had similarly messy rooms. Clutter is in my genes.

I have such a long history of clutter and such a genetic disposition towards clutter that impressing me with disorder is difficult, but yesterday, when I visited two colleagues' office, I was impressed. The office is at most four square yards. In that space are two desks, two office chairs, one tall filing cabinet, two computers, two tall bookshelves, and twenty-three boxes (You have to look down--under the desks where most people would put their feet--and up--on top of file cabinets and bookshelves-- to find them all.) . There are seven piles of paper with approximately 800 pieces of paper in each one, 18 files that are not in the filing cabinet, 15 three-ring binders, 727 books, and six giant post-its with 23 smaller post-its on them. There is the cozy feel of home: one Mexican rug, one art hanging from India, and eight children's drawings. You can find the word "To Do" thirteen times: once on a box, once on a scrap of paper, once on a folder, four times on the giant post-its, and so forth.

This place has the feel of too much to do and too little time. Other colleagues step in for a moment just to grab some resource as they run by. One colleague's backpack is tossed on the floor. The other totes her stuff in one of those suitcases that airline attendants pull through the airports. People scurry by, looking neither left nor right. In the nearby conference room, teachers meet to write curriculum. They'll need to rush back to their schools at the end of the day to see how their classes went with substitutes.

Before brain surgery, I filled the nooks and crannies of my days with too many to do lists and stacks of dusty papers. I rushed from my car to the classroom and ran to the restroom in any spare moment. I arose at 4 am, so that I could be at the gym by five to swim and lift and rush through my sun salutation before my work day began.

My physical spaces were as cluttered as my time. I had stacks of ungraded papers, revised and re-revised lesson plans, and unpaid bills. A couple of times, I fell racing about with stacks of papers in my arms. The papers fluttered into the rain until I jumped up and grabbed them and ran on.

Since brain surgery, I slow down and focus. I must. If I try to dash around like I did before, my head will hurt, and I will fall over stuff. This new way of living in space and time is a gift. I sold many of my books. I have a few folders in the filing drawer in my desk, but I only take a piece of paper if I really need it. There is not so much stuff around both because it's difficult for me to read paper and because I can't lift even a three-ring binder very easily. The space, I find, gives me mental and emotional space, too. Though I'm dealing with brain tumors and their after-effects, I'm more centered and spacious in my self than I was before.

My  time, too, has more room in it. I cannot rush from moment to moment or room to room so I do not rush. I plan my days so that I can complete my responsibilities in a way that doesn't require me to hurry. I leave early to be sure I'm at places on time. I say, "I'm sorry, but I'm busy then. Can we plan for another time?" I drive slowly.  I am no longer part of Merton's contemporary violence which is overwork.  I can stop to say hello. I can ask a friend how they are and wait to hear the answer. I can notice the wet smell of fall. I can get lost in the intricacies of a leaf's architecture. I can.

Gotta go so that I'll be early for hocus pocus. Mary

P.S. 8 What symptoms led to my diagnosis?

I'm in an online support group for adults with ependymomas (the rare brain tumor I had), and there's been a lot of talk lately about symptoms people had before diagnosis.

One person had ongoing hiccoughs so badly that he couldn't eat and finally had to go to the ermergency room, where he was diagnosed.  In fact, quite a few folks were diagnosed in the emergency room, gnerally after a fall or a seizure or a migraine.

I didn't have hiccoghs, but for a long time I had a lot of symptoms that were similar to others (headaches, balance issues, fatigue, thyroid problems.) My surgeon guessed that my ependymoma started in utero. I started seeing doctors for symptoms when I was twelve. The ependymoma was diagnosed when I was 43.

In elementary school I first noticed slight balance issues that seemed a little weird, especially since in general I thought I was a strong athlete. In first grade, I thought of myself as really good at kickball, but one time I sprained an ankle when running off the end of a sidewalk. This seemed strange to me, that a sidewalk might trip me up: my first lesson in humility.

In my teens, I blacked out and fainted from time to time. My junior high basketball teammate nicknamed me "Casper" because I turned so white. I had slight balance problems, so that getting my high school skinny self to rebound was unsuccessful. My coach would yell, "Stick your butt out!" and I would yell back, "Coach, I ain't got no butt!" This seemed to be elucidating the obvious. I was an athlete and was also unusually tall and thin, so my doctors and I thought my skinniness explained the fainting. I was much stronger on my right side than on my left, now I know a symptom of ependymomas. In soccer, I just stuck to the right side of the field so that I could use my more coordinated right side. Teenage-hood is also the era in which I started my period, a bizarre misery that causes all sorts of strange pains, so the relatively subtle symptoms from the ependymoma seemed to fit in.

Once  when my friend Kim and I spent the day at a racketball club, we played racketball and then alternated between the jacuzzi and the sauna. I got very weak and lost my vision for about half an hour. A nap and a coca-cola revived me.

In my senior year of high school, I had mono, which I now suspect was related to the fatigue from the tumor. I was often too tired to eat. I lost a lot of weight, and my dad thought I was anorexic, a diagnosis that I know parents often miss, so I give him a lot of credit for noticing. Anorexia was more likely than a brain tumor, but in this case inaccurate.


In my early twenties, I fainted while giving a talk to a large group of Southern Baptists. Though some people say that a large group of Southern Baptists is likely to make anyone faint, my dramatic collapse led to a CAT scan, which--acording to the doctor--didn't reveal any concern. The doctor said I would probably grow out of the fainting.

The year or two before diagnosis, now in my forties, I continued experiencing fatigue, and the headaches and dizziness got worse. I also found I often was slightly off-balance, grazing a door frame as I walked through or swaying slightly onto Ann's side of the sidewalk when we walked. I started having double vision when I biked and then having double-vision and the spins when I was teaching. I thought I was very clever to manage the double-vision by closing one eye. Ann was not so impressed and told me that I should see my doctor. My doctor told me to drink more water. Thinking I might be experiencing vision problems, as I was in my forties, I saw an opthamologist who also told me to drink more water.

Several months later, I emailed my doctor again, putting all of the symptoms together, and she ordered a CAT scan. My tumor was by this time the size of a plum, in my fourth ventrical and attached to my brainstem. I had neurosurgery within the month.

Doctors estimated that it would take me four to six weeks to recover from neurosurgery. I aksed my primary physician what "recover" meant in this context: Did it mean being able to go to the bathroom, being able to walk, or being able to hike. She replied that yes, it might mean any of these things. Or none of them. It took me a long time to recover from surgery. I was in rehab for three and a half weeks and then had home care until I could get to the hospital for rehab. Before the end of the year, I had learned to walk again with a cane. Facial nerves on the right side of my face also rejuvenated somewhat, so that I could close my right eye again and speak more clearly. Still, however, among other losses, I cannot whistle or drink out of a straw. These difficulties are more problematic than you might think.

Last December, two and a half years after surgery, an MRI revealed a second tumor, much smaller. Tumor boards debated what should be done: some thought surgery while others thought radiation and some thought both. I had six weeks of radiation. Radiation again jumbled my vision, affected my balance (and not in that good way), made a swath of my hair fall out, and made me very tired. In an especially cruel turn, I developed allergies to garlic, chocolate and cheddar.
I've learned to walk again, with a cane, though my balance is still pretty tipsy. I can see as long as I close one eye, so that the double vision doesn't distract me. Prism glasses help some. Fatigue is still an issue. I don't play basketball anymore. Now I'm a big fan.

My next MRI will be November 9, Veterans' Day. I'll let you know how it goes.

I"m hoping for the best--Mary

P.S. 9 They put her mouth on crooked.

Bailey's in fourth grade now, and one of the teachers at her school had a stroke last year. When her mom Diana asked how the teacher seems to be doing, Bailey said, "Fine, I think. But they put her mouth on crooked."

I often wonder how other people see me. I know other people see me as disabled because they move to the far side of the walkway for me or--on a good day--open the door. Mothers pull their young children out of my path. People sitting at a table pull their chairs under when they see me coming. I appreciate all of these actions, but they do make me wonder what others see when they see me.

When I first returned to working in high schools after my brain surgery, I worked at a school with a class of students with physical disabilities. I wore an eye-patch to help me manage the double-vision. One student named Jason always stopped when we passed, moved to stand directly in front of me, and looked, hard, at my face. Sometimes he felt my face, gently, with his hands. This made his teachers and the principal nervous. I figured in his more-than-a-decade of schooling, he may not have seen adults in the school dealing with disabilities that seemed similar to his. I felt he was seeking a connection he had not otherwise found.

I want to be a respectful person, but before my disabilities, I wasn't sure how to be respectful of persons with disabilities. Do I pretend I don't notice they're in a wheelchair and just nod my head hello, attempting to greet the person in passing like I would any other person? Maybe some people with disabilities prefer their disabilities be ignored, but it seems weird to me.

Kind of like, years ago, when I went with my second family the Whites to an IHOP for lunch between games during a soccer tournament. My right leg seized with a cramp, and I hollered and threw my leg out. The four Whites who were there helped massage the cramp out of my leg until I could bend it and sit up at the table. It was quite a scene, but no one in the restaurant looked up from their newspapers. I didn't want to draw attention, but the fact that no one seemed to notice my outburst was weird. It was like we were in different universes, and I was invisible to them.

That's how I feel now when people pretend they don't notice I have disabilities. How can a person not notice? I wear funny glasses, hold my head at an angle, and walk with a cane. If I"m with someone, I"m leaning on their arm. I'd rather you notice me with my dsabilities than feel invisible. After all, my disabilities are part of me now.

Mary

P.S. 5 Perspective

My chiropractor, Richard Bartlett, told me this excellent story about keeping loss in perspective. A few years ago, the Seattle Sonics (there was a men's NBA basketball team in Seattle then), played in the NBA finals. This year seemed to Dr. Bartlett the year this team should win. Sam Perkins, after all, was on the team along with other greats. Dr. Bartlett had season tickets with his son. This win would be a testosterone fest. (He didn't tell me that part. I inferred.)

The Sonics, however, lost. Dr. Bartlett was devastated. He couldn't eat. He couldn't sleep. For three weeks he couldn't shake the loss. Then, one day, he was riding the bus home from the office, tired from his full day of work healing people, and he looked out the window to see a large black man escorting a beautiful young woman into a limousine. That life looked good to Dr. Bartlett. That man looked happy. That man looked familiar. That man was Sam Perkins.

Sam Perkins the player was plenty happy. Dr. Bartlett the fan, who had no control over winning and losing, was grieving. This scenario, Dr. Barlett wisely noted, was ridiculous. This loss was not his to control, not his to grieve.

Deep. But if the Storm loses next year, don't even try this logic on me.

Having experienced losses beyond my control, I know that control is not the central issue in appropriate grieving (unless maybe we're talking sports, which we often are.) I have grieved my loss of balance, of clear vision, of a mouth that works the same on both sides. These losses were not under my control, but for sure they are mine.

A few years ago, my friend Jenny, a doctor who has herself been through struggle and loss from diabetes, told me that one day I might be thankful for my tumors. To be honest, I'm not there yet, and I don't know if I'll ever be. I am aware, however, that with loss I have gained a new perspective on what is important to me, and I align my days with what's important. I know that because of this new perspective my life has changed, in many ways for the better. Every minute now is different than it might have been.

I remember years ago a new minister promised the congregation, "Every time I look at you, I will look at you as a child of God." This is how I see more now, not because I try but because I do. I am every moment amazed by the people in my world, by the phenomenal beauty of fall leaves and sun breaks, by the gift of being here.

Glad to be here, and I'm so thankful you are, too. Mary

Summer #7: Calendar Conundrum

Summer #7: Last week I called the hair salon three times in five minutes to make an appointment to get my hairs cut. The first time, I made an appointment for Friday at 11 a.m. Then I realized I had a massage then. I called right back and changed the appointment to Saturday at 11 a.m. Then I realized I'm having brunch with my friend Ms. Marion then. I called right back and moved the appointment to Saturday at 2 p.m. When I gave the receptionist my name for the third time, she laughed. If I have plans with you Saturday at 2 p.m. could you let me know and could we reschedule? I siimply cannot call that woman back again.

I don't think I'm experiencing any serious cognitive effects from the surgery and radiation, but maybe this calendar thing is a sign to me. A few weeks ago, I did the exact same thing in scheduling a massage. The receptionist there just laughed, too. I feel grateful for the sense of humor.

Maybe it's just that I'm trying to keep too many dates in my mind because Ann, in cleaning up, recycled the calendar. (I don't really know that. I just like to hear her say, "I did not.") I am, however, holding a lot of dates in my mind. For our family trip to the beach, for example, here are the dates in my mind:
thursday night: mary and ann arrive at rdu
friday: kristin, hayden, lucie and gretchen arrive in raleigh
friday night: brother matt arrives at rdu
saturday: brother matt's family, mary and ann, and mom and dad drive to the beach and jennifer, isabella, jack and willie drive to the beach from ny
sunday night: birthday bash for ann, kristin and hayden
monday afternoon: matt, kristin, hayden, lucie and gretchen go to figure 8
wed: todd and sam arrive at the beach
saturday: todd, jack and willie return to ny; jennifer and isabella go to florida; mary, ann, dad and sam go to winston salem; mom goes home
tuesday: mary and ann fly out of rdu; we don't care what the rest of you do after that.

Maybe it's a calendar conundrum, or maybe my family is just too complicated. Or maybe Ann shouldn't recycle the calendar until the year is out. Just maybe. Mary

NL #43: The Courage to Learn

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

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

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

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

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

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

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

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

Oscar the Grouch: "I love trash."

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

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

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

Mary