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. 8 Who will love me?

Last weekend a university student who graduated from a high school where I work committed suicide. Everywhere I go, whether folks knew her or not, people seem shaken by it. Like any high school teacher, I've seen too many teen deaths. My students have died in cars, in the water, and on the football field. Suicide, direct or through mental diseases like anorexia, feel the hardest to me.

An excellent teacher who works at the school, having difficulty elliciting any excitement from her students in one class, asked them to write her a letter. One student wrote, "Yesterday my friend's sister died. My mom has breast cancer and is really sick. My grandma can't remember anything anymore. If everyone dies, who will take care of me? Who will love me?"

A few years ago when I was teaching a class, near the beginning of the year, one of my freshmen asked me if I ever cried in class. I think maybe they were being exasperating and I suspect that at times they'd made their previous teacher cry. I thought about it and responded truthfully, "Only when a student dies." Several of them, incredulous, asked, "You've had a student die?" and I responded, truthfully (as is my nature) again, "Most years someone dies." They were quiet and didn't raise the subject again. I forgot about it.

At the end of first semester, students were brainstorming what we had to celebrate from first semester. Students said things like, "We are deeper writers" and "We know how to read harder texts." One student said, "We are like brothers and sisters for one another." Then another student said, "No one has died so far this year." They were all quiet and nodded. I added it to the list.

P.S. 7 Who am I?

Who am I?

The too-early child of a nurse and a doctor,

I am from Grady hospital's white wing.
I am from a house on a hill,
from copperheads in the lawn,
from a cul-de-sac,
from a suburban acre
in the piney woods.

I am from
the magic word and
the golden rule,
from "Oh, I'd like to thank the Lord,"
from "Have you done your homework yet?" and
Mahalia at Christmas.

I am from
Yellow roses in a yellow room,
from the nighly stock report,
from Hotlips and Radar.

I am from
the backyard basketball court,
Sunday soccer games after church,
the volleyball gym.

And I am

a child of the seventies,
of Watergate and
Add-a-beads.

I am
a woman in love
with a woman.

I am
of the Land of Starbucks,
the Mountain,
and the U.

I am
a teacher in schools
where brown rain falls through the ceiling.

I am
a survivor:
two brain tumors, three surgeries, six weeks of radiation.

I am the woman down the street
who walks with a cane.

I am a daughter,
a sister and a cousin,
a niece and an auntie,
a writer,
an adventurer,
a friend.

"I contain multitudes."

Mediocre in Spanish,
child of Senora Alissa Lopez,
Romero y Father Grande.

I aspire

to courage
and kindness
and right.

I aspire
to wander beyond the boundaries of
Who I am and
Where I am from.

P.S. 6 I could have been a boy scout.

Yoga hs been one of the constancies on either side of the semi-colon in the sentence that is my life (not like a prison sentence--like nouns and verbas and lots of parentheses). Before brain surgery, I did a sun salutation every morning. Right after surgery, when I was still in the hospital bed, I did hospital bed yoga: any posture or stretch I could think of that I could do lying down was my daily exercise.

Now that I'm home and walking but still uneasy with my balance, I do lying down and sitting up yoga every morning. Mostly, I do a sun salutation minus tree pose (where a person stands like a tree on one leg--the way all trees stand), and minus triangle pose or anything else that might make me fall and bump my head. I've added to the routine poses that stretch my back and my neck, a kind of rehab yoga.

Not only does the yoga serve to stretch my body and to center me, but it also reminds of the calm within myself, a place that I can access when anxiety--about falling or about being unable to work or about dying--sets in.

I feel lucky to have found such a discipline before my brain tumors. So much was in place for me before brain tumors: a loving partner and family, a variety of experiences in my vocation, a supportive church community, an amazing group of friends, Storm allegiance and other past-times.

Of a paranoid imagination, I have always tried to prepare for hard times. Like the boy scouts, I have pledged to be prepared. Before surgery, I biked all over town, partly because I loved it, and partly because I knew a car battery would die in the event of a nuclear attack (I didn't go so far as to figure out the breathing part); I'd work to strenghten my upper body in case one day I couldn't use my legs; I've always saved as much as I can for retirmement, in case Social Security runs out (this, I don't think, is paranoid); I hiked up rocky trails with my teeth clenched, so that if I fell I would not bite off my tongue.
I know some Christians talk about preparing for the afterlife, but if nothing's gone really wrong for you yet, I'd suggest you prepare for the unknowns of this like. Yoga's a good place to start, for now and for later.

Of course, last weekend the local newspaper reported that the local minister of a megachurch said that doing yoga is like inviting in little demons. The minister's logic went like this: yoga's parent is Hinduism, a religion that, in this enlightened minister's opinion, worships many gods and is therefore pagan and ergo evil.  I wonder where journalists go to find and report such wisdom.

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

PS4 who am i

Like many poetry-reading teenagers, I connected with Emily Dickenson's "Are you a nobody? I'm a nobody, too." When my sophomore English teacher Mrs. Smisson invited us to create a graphic symbol of ourselves, I cut out a large question mark. Today, I'm more of a semi-colon than a question mark, but the question still intrigues me: Who am I?

The too-early child of a nurse and a doctor,
I am from Grady hospital's white wing.
I am from a house on a hill,
from copperheads in the lawn,
from a cul-de-sac,
from a suburban acre
in the piney woods.

I am from
the magic word and
the golden rule,
from "Oh, I'd like to thank the Lord," and
Mahalia at Christmas.

I am from
Yellow roses in a yellow room,
from the nighly stock report,
from Hotlips and Radar.

I am from
the backyard basketball court,
Sunday soccer games after church,
the volleyball gym.

And I am
a child of the seventies,
of Watergate and
Add-a-beads.

I am
a woman in love
with a woman.

I am
a teacher in schools
where brown rain falls through the ceiling.

I am
a survivor:
two brain tumors, three surgeries, six weeks of radiation.

I  am the woman down the street
who walks with a cane.

I am a daughter,
a sister and a cousin,
a niece and an aunt,
a writer,
an adventurer,
a friend.

"I contain multitudes."

Mediocre in Spanish,
child of Apparicio y Maria,
Romero y Father Grande.

I aspire
to courage
and kindness
and right.

I aspire to wander beyond the boundaries of
Who I am and
Where I am from.

PS3 I'm a big fan.

When my high school teachers attended my soccer, volleyball and basketball games, I thought it was weird. Other athletes seemed to appreciate these teachers' attendance, but it seemed to me that it would be more fun for them to play a sport themselves instead of watching me.

Now that I'm older and struggling with balance and vision as I recover from brain surgery and radiation, I'm a big fan. Ann and I attend all of the home games for the Storm, Seattle's WNBA team. When they're away we watch them on television if the game's available. We scour the newspaper for articles about them. Storm player bobbleheads of Lauren Jackson, Swin Cash, and Sue Bird grace our living room. In the back room, we have our "Title IX Shrine," posters of the original Seattle ABA team, The Reign, the Storm team the year Sheryl Swoops played, and a signed cartoon of Lauren and Sue (we're on a first name basis.)

Here's how to be a fan: On game day, wear your Storm gear. Also wear your Storm gear every other day. Make sure you have enough so that you aren't stanky. At church, if there are prayers of thanksgiving, be sure to pray in thanks for the Storm. Even if you can hardly walk, practice your layups on the court at the neighborhood park. Pretend you're Sue--as you practice layups and at all other times.

At the game (of course you'll go), stand up at the beginning of each half until a Storm player scores. Only then can you sit down. Yell and clap when directed by the booming voice. When the other team enters the arena for warm-ups, clap for them. When their starters are introduced, clap again. If there's a really good player on the other team or especially if there's a player who once wore a Storm uniform, clap a lot. We are good sports, we Storm fans, and we appreciate good basketball players, whether or not they play for us. When the game's underway, however, cheer only for the Storm. Some Storm fans boo the referees, but you should not do this. It's obnoxious. The refs, like everyone else out there, are doing their best.

Have a beer at the game. Vendors sell microbrews, and you can't buy ice-cream anymore, so you may as well have a beer. After the game, talk about each big play with your friends. Honk your horn joyfully. Drive like you cheer, politely. The next day look sadly at anyone who was not at the game. Nod your head as if that person who did not attend has a disease. Then tell them when the next game is as if you assume they want to know.

If you have an office, or even just a wall, hang Storm memorabilia for all to see. Do not take your memorabilia down in the off-season. This would be treasonous.

I'm a big fan. You can be, too. Mary

P.S. 2 A pink and a blue or two pinks or two blues?

I didn't come out to myself as a lesbian until I was 30 years old, so I'm not sure what it's like to come out as a school-child. When I did come out, I remembered unintended insults from the past, so now that I'm a grown-up (sort of), I think a lot about younger persons who may be GLBTQ (gay, lesbian, bisexual, transgendered, queer/questioning) and what they experience. Friends who came out when they were school-age have told me how hard that was.

I read an article a few years back that said that young children often may perceive themselves as GLBTQ before they start school, but quickly learn from their schoolmates that being GLBTQ is not okay, and they go underground for a while. According to this article, those children who start to imagine themselves as GLBTQ may start asking questions and struggling again around fourth, fifth, or sixth grade. I was thinking of things that might have helped me as a child, and I thought I'd share them with you in case you have young ones in your life.

As a child, I believe I would  have been interested in open images of myself in the future: language of a partner instead of a husband or wife and images of a "wedding" or "ceremony" that go beyond male/female. My siblings and several friends brought their children to Ann's and my wedding. What an amazing experience that would have been for me. One of my younger nieces is still trying to understand it all: "You're getting married? But you're girls!" Years ago, Ann and I were playing the game of Life with my sister's four children at the beach one day. When Willie landed on "Get Married", Isabella asked if he wanted two pinks, two blues, or a pink and a blue. She was proud of herself and so were we. And amused. I can't imagine having imagined that option as a child.

I rebelled against pink at an early age. Perhaps that was my subconscious way of claiming my difference. My parents were partially open to new gender roles. My sister and I played sports and were required to cut the grass, for example. I don't think my brother, however, was required to take on traditionally female roles. Well, once Sister Jennifer made him wash and put away the dishes, but he didn't rinse them, so Mom had to rewash all of the dishes. (No, neither Jennifer nor Matthew took that on, and I certainly didn't. I think I might have watched.) Last summer, my little brother (now old enough for a colonoscopy), put away dishes from the dishwasher, which would have been helpful except that the dishes were still dirty. Clearly,  he needed more guidance at a young age.

Similarly, I always believed I could have any occupation I sought (doctor, lawyer, engineer, etc.), but I'm not sure my brother believed he could have a traditionally female occupation, say a nurse or a kindergarten teacher.

In addition to chores and occupations, openness to style or fashion that goes against the gender-code: (pink for girls, blue or red for boys, dolls just for girls, math for boys, etc.) might have been helpful. I was in general not amused by dolls: only by one that was my size and would startle my mom when mom walked in the room and mistook the doll for her child. She would kind of jump and roll her eyes. I loved that. My brother loved dolls and our toy kitchen, but he had to trade them in for toy guns and holsters to ride on his rocking horse. He cried, terrified, the first day he rode that horse. Perhaps I should clarify here that as far as I know my brother is straight.

There was plenty of humor everywhere about gay people. In the seventies, we wore oxford shirts with "fag tags" on the back. We played "smear the queer." When our neighbor, Dr. King, came out as a gay man I heard him called, "Dr. Queen." I laughed. It was funny. But when I came out, I remembered the jokes and felt angry.

My friends and I make jokes still, but now we're explicitly on the inside together. Giving directions in the car, we avoid, "Go straight," and opt insted for "Go forward." When a male/ and female couple shows affection publically, we might say to one another, "It's okay for them to love each other, but do they have to put it in our faces?" At a poker game the other night, we decided that the best hand, beyond a royal flush, is a queer royal flush, one that wraps around from the Ace to the two.

For young ones though, whether they're GLBTQ or not, helping them find a safe place in the world for each person to be the one created for this world is serious. The struggles of GLBTQ youth, their likelihood to be bulllied or homeless or suicidal is well-documented, and these struggles are too serious for humor that might be misinterpreted.

No joke. Mary

P.S. All about me.

Ani Defranco forgot the words to the song she was singing at The Vancouver Folk Music Festival several years ago. Amusingly, she strummed her guitar and sang, "All about me. More about me. More about me." Likewise, when I went to Michoacan, Mexico as a volunteer for a health project in my twenties, I knew the adventure would be more about me than about the people I was going to help.

This is my way of saying I'd like to write again. I remmber now that this blog is not for you, really. It's for me. In my commitment to write a daily entry and in my delight at all the positive feedback, I had forgotten that the blog is really for me. It is of course also about you and this community and our connection. True. But I forgot that it was born from my need to put words to my experience and to send those words out to those who, graciously, listen.

After a fare-thee-well and a month's hiatus, I'd like to come back. I find myself writing entries in my head that only fade to black and I'm sorry to have lost them. So I'd like to write to you again, but this time I'll remember that the writing is as much about me as it is about us, and I'll ask your forbearance as I write when I feel compelled instead of each day.

Word? Mary