July 20, 2017

July 20, 2017
Mary and Dosey

Wednesday, October 31, 2012

Unpalatable?

A couple of years ago, I entered a brief memoir titled, “The Benefits of Brain Tumors.”  in a regional writing contest. In the memoirito, I wrote about brain tumors' convenient benefits like having a parking place close to the door or the elevator and paying a lower fare on the city bus than those who are temporarily abled.

I also wrote about soul-changing benefits, like the deep feeling of gratitude I have for each day and new access to people who also have disabilities and people who are African American.

My memoirito was chosen as a finalist, but the judge didn’t choose it as the winner. Though she appreciated the humor, she didn't seem to like the idea that a brain tumor would have benefits. She wrote in her evaluation, “Your sense of humor makes this palatable.”

Palatable?

I knew that the title would surprise a reader, maybe make the reader uncomfortable, but it never occurred to me that someone would read the idea that there are upsides to brain tumors and would find the idea distasteful.

I have certainly experienced the gifts of brain tumors. I write about these gifts sincerely: this is not tumor humor.
I suspect that struggles might even be harder for the people who love us than they are for us. After all, in some way they’ve lost one person in their lives and gained a different person whom they didn’t ask for. Their lives change, but in my memoirito I wasn’t writing about the others in our lives. I was writing about myself.

I didn’t intend to shock a reader’s sense of decorum, nor was I masking my fear of disability and death with graveyard humor. I wasn’t trying to be inspiring or superhuman. I wasn’t keeping a stiff upper lip.  

I was just telling it like it is. Like it is for me now, anyway.

Not like it was when I was diagnosed with the first tumor and then the second. I don’t know if others anticipate gifts in those earliest moments of fear and doubt, but I didn’t.
The diagnoses and the treatments were hard and upsetting. I wasn’t ready to reflect just then. I was busy trying to live.
I didn’t ask for brain tumors, and I wouldn’t ask for them again. I do not want a third one. I’ve mostly noticed these gifts in my times of reflection after I’ve survived, as it seems that I will continue to survive, for a while anyway.

I my memoritio, I was telling it like it was for me then: like it is for me now.  Unpalatable?

As the poet Robert Frost wrote in “Birches,” “May no fate willfully misunderstand me/And half grant what I wish, and snatch me away/ Not to return. Earth’s the right place for love./ I don’t know where it’s likely to go better."Like Frost’s narrator, I don’t want to die yet. I love my life.

I’m not dying slowly—except in the sense that we all are. I am changing, and I have changed considerably as a result of my tumors and their treatments. There’s loss as well as gain in change.

The losses are hard. Don’t get me wrong. Today in yoga another student, Pat, who’s 77 years old, talked about an 88 year-old man who had volunteered in her classroom. (I assume she was a teacher.) One day, she got bold and asked him what it’s like to get old. When he told her that the losses were hard, she asked if he meant the people who have died. No: he meant the losses in his body.

I, too, miss my old body. Sometimes I fantasize that I can run again, just once. If only I could see through both eyes again or if only I could bounce up a set of stairs. Just once. That would be like jumping off of the ground and flying. I would only need to do it once, and I would know how amazing running or jumping or seeing three-dimensionally or flying is.
So yes. There’s loss. That seems to go without saying. But there are gifts, too—something which those who have not had serious health conditions may find surprising—or unpalatable.

As I’ve been interviewing other people with life-changing health conditions, many others have echoed that sentiment without a prompt from me.

My neighbor Joanie, for example, is going through her third round of chemo for breast cancer. The cancer is now stage four metastatic breast cancer. In the interview, she said, “There have been gifts. And I’ve found out that I can get through anything. It makes me sad when I meet people who can’t see the gifts. I wish I could have gotten here without this, but where I am and who I am are good because of everything I’ve learned from the experience of having cancer.”

Similarly, Bruce, who facilitates my online support group for people with ependymomas (our brand of brain tumors) and those in our lives wrote: “So - did I ask for the tumor? Of course not. But, I'll say it again - I have said it before. (This one is sure to anger some of you) – ‘I recommend a brain tumor as long as it does not kill you.’ My life has purpose now. I appreciate each and every second I am alive.”


Maybe gratitude is the gift of living long enough to suffer.
Maybe the gift is a kind of wisdom and peace with what is.

Maybe this world could use more of that peace, more of that wisdom.

On Monday, my yoga teacher Dawn read from Pema Chödrön, and the reading echoed this gift of loss: "feelings like disappointment, embarrassment, irritation, resentment, anger, jealousy, and fear, instead of being bad news, are actually very clear moments that teach us where it is that we're holding back. They teach us to perk up and lean in when we feel we'd rather collapse and back away.

“They're like messengers that show us, with terrifying clarity, exactly where we're stuck. This very moment is the perfect teacher, and, lucky for us, it's with us wherever we are."

Yes, lucky.
Peace. Namaste.

Thursday, October 25, 2012

The Way We Were

After dinner, Ann often reads to me from a book we’re “reading” together (in the sense that she reads aloud, and I lie on a pallet in front of the fire and listen.)

Right now we’re reading Miracle Boy Grows Up, the memoir of a young man born with significant physical disabilities in 1962 (two years before my birth). In last night’s reading, Miracle Boy, who is twelve, has surgery to straighten a spine that has become so crooked from scoliosis that without the surgery, he will lose the ability to breathe.

Miracle Boy has a medieval treatment in which rods are drilled into his knees and his skull (yes, his skull). Eventually, metal rods are sewn into his spine, supporting it in becoming a little straighter.

He describes his time in Critical Care, and his description surprised me because I remember very little that was similar for me.

I remember being rolled in my hospital bed to a quiet room. I remember my surgeon, Dr. Rapport, talking with me and telling me that the surgery went well and that my face was drooping like I had Bell’s Palsey, but that would probably resolve in time. (It mostly did…after five and a half years, I’m told that my face looks remarkably normal. Counting five and a half years in post-surgery time is sort of like counting dog years. You need a formula. 5 and ½ years in normal people time=one month in post-surgery time.)

I remember Ann coming in to see me after surgery and saying, “Congratulations. You made it!” I also remember her saying that friends and family would visit in ones and twos just to say hi. I remember that I asked her to tell my dad to be quiet. (He can be quite loud.) I remember that she thought I was kidding about telling him to be quiet, and I remember that I wasn’t.

I remember dozing on and off, and I remember that each time I awoke, Ann was by my side. I remember that there was brown carpet in the room. I remember that a nurse said that I could have ice slivers if Ann stood by me, and I remember scolding Ann when she moved across the room.

I remember noises in the night as a new patient coming in, and I remember Ann saying, “That’s Ellen!” (a colleague and friend.) I remember that Ellen’s husband Paul, another colleague, died that night.

The next day I recall that I was in another room: a large one that also had brown carpet. I remember that was alone with my guardian, my mother, and that at three in the morning my colleague Alanah brought fifty seniors into the Critical Care room to do their senior project presentations. I remember that my bed tilted 90 degrees and that with all the noise I tried to leave, but tubes held me in place.

That’s what I remember, but I learned as we talked about Miracle Boy’s experience that my memories aren’t very accurate.

Apparently a nurse, a long-time acquaintance, sat vigil by my bed that first night. I don’t remember her at all. Ellen’s husband Paul didn’t die that night, but died a day or so later. Alanah didn’t bring her seniors into the Critical Care Unit: that was a hallucination. My bed wasn’t tilting. Mom and I weren’t in a huge room. I’m guessing there was no brown carpet, either.

It’s so interesting how the mind and memory work.

This weekend, my Broughton High School Class of 1982 will celebrate our 30th reunion. I won’t be there, but the celebration has me thinking about what I remember from high school, and wondering how much is accurate and how much I’ve forgotten.

I think I remember that my English teacher, Ms. Sally Smisson, posting my first assignment on the wall all year. In response to an assignment requiring me to create a symbol of myself, I created a collage of photos into a giant question mark. That was the wisest symbol I ever created.

I think I remember my friend Ande, a junior, telling me that I had a bee on my shirt, and me rolling my eyes about her harassing the sophomores just as the bee stung me.

I remember that my friend Becky had a crush on a guy named Randy, and that Randy gave Becky a bag of M&Ms that were all green.

I’m pretty sure I remember talking about hair care with the African-American basketball players, sitting on the bench, and quitting the basketball team.

I remember the high school band, “Slow Children,” and all of the stolen street signs that warned drivers to slow down because children were in the area. I remember my friend Theresa passing a note during our senior English class that said, “Your Sister Told Me.” That was one of Slow Children’s songs.

I remember Spring Break trips to the beach, and throwing the quarter where no one could find it as we played a drinking game called Quarters before the photograph to the right was taken.

 I think I remember all of the people in that photo. I think I remember looking like that.

For sure, I remember the angst of being a teenager and of trying to figure out who I was and how I fit in. I recall fearing that I might not ever know myself and that I might not ever fit in.

What was harder: brain surgery or the self-doubt of being a teenager? Self-doubt. That I remember for sure.

 

Sunday, October 21, 2012

Whistlin' in the Dark

I begin my masters program in the School of Social Work at the University of Washington whistlin’ in the dark.

Like a woman walking down a dark, unfamiliar street, I whistle to convince myself that though I feel vulnerable I am probably okay. Probably.

What do I whistle? Not the cheerfully confident “Singin’ in the Rain.” Not the soulful wisdom of a Gregorian Chant (I’m not sure those are whistle-able anyway.) I am whistling the opening of Beethoven’s Fifth Symphony.

Beethoven’s famous “da-da-da-daaaah” echoes my heart’s pounding, a heaviness and fear. In hisfollowing stanzas, a pastoral lightness almost mocks my pounding heart, but then the violins and piccolos race in and the pounding returns. My heart pounds, and it races. I am afraid.

Maybe Beethoven was afraid, like me. He was in his mid-thirties as he wrote this symphony, and was becoming increasingly deaf. In his world, the Napoleonic Wars raged, and Napoleon’s troops occupied his city of Vienna in 1805 as he was beginning to write his fifth symphony.

Of course, I’m not really whistling Beethoven’s Fifth. For one thing, I don’t have all of those instruments in my lips. Actually, I don’t have any instruments in my lips: some of the paralysis since neurosurgery remains, and I can’t whistle.

The whistlin’s a metaphor for bravado. The darkness is a metaphor, too, a darkness of self-doubt and vulnerability. The pounding and racing heart is not metaphorical.

My heart pounds and races: Can I do this?

I think I can. I have been through tough times of doubt before, and each time I have come to a time of triumph, or at least solace.

In college, when I prepared for my Chemistry 101 exam, I poured over my notes, believing that at some point the discipline’s logic would make sense to me. It never did. When I took the exam, I decided that I would go through the exam and do the parts that were clear to me first. Then I would go back to work on the harder problems.

There were 13 questions on the exam, each with a part A and a part B. My first time through, I answered one part of one question. The rest were harder problems.

In the end, I turned the exam into a creative writing assignment. I made up formulas and worked them through as though they made sense. My writing was like the mad scribbling in A Beautiful Mind. If this professor were putting me through this hell, I would make him grade all of this nonsense. This was his punishment.

As I talked on the phone with my dad that night, I was mindful of Davidson’s Honor Code and knew that I could not say whether the exam was easy or hard. I told Dad, “Let me put it this way. I needed to score 27% to pass. I’m not sure I passed.”

I ended the course with a B. I suspect that the professor wearied of trying to interpret my lunacy, gave up grading my scribbles, and simply lowered my grade from a B+ to a B.

Fair enough. Or generous.

I felt similarly lost in yesterday afternoon’s class. It was as if everyone else knew something that I didn’t, and I wondered if my disabilities or my lack of experience in this field explained my struggle. As it turned out, my school email account is not working, so everyone else did know something that I didn’t know as they had read emails before class that I had not received, but I didn’t know that at the time.

My favorite moment in the class came when Yvette, an African-American woman with a calming presence, asked the professor, who is also African-American, to help her with the technology. She asked him gently, “Can ya help a sistah out?”

No, he would not help her out. He would talk about self-reliance, which I found irritating. Part of self-reliance, I know from learning to live with these disabilities, is knowing when to ask for help. And she was asking.

Yvette was asking for herself, but I felt that she was also asking for me. Though Steve is as kind a professor as I can imagine, he would not be helping us out, and Yvette and I would need to go elsewhere for help.

My panic rose as the class’s conversation continued, and I seemed to know less and less. In a small group that met as other small groups were meeting to work on a group project, my hearing loss exacerbated my frustration. I struggled to hear, and I could not figure out what we were supposed to be doing.

Steve kept saying that there was something important about deafness and Guam that was key to understanding the problem that we were exploring, but he would not tell us what it was. He only gave us a website address that as far as I can tell does not divulge his secret. More irritating self-reliance.

I felt like a child playing the silly game of trying to guess which hand holds the candy. I am not psychic, and I cannot yet figure this out. The puzzle doesn’t seem key to the task’s learning, so why won’t he just tell us? I don’t believe that a lesson in self-reliance is the reason. Maybe it’s a lesson in powerlessness. An unintentional lesson.

A central concept in the class, perhaps ironically, is the way in which so many of us identify in some ways with cultures of privilege and in other ways with oppressed communities. I have always seen myself as privileged in that I’m white and grew up in an upper middle-class suburb where I had advantages of health care, education, and security in housing and food. Though I am gay and dealing with disabilities now, a member of two groups plagued by –isms, I still recognize how important my privileged upbringing is to my living meaningfully with these disabilities

I have always also seen myself as a woman in a world where men hold power. I have been a feminist since my pre-school days, and I have bristled at men’s power in my life. The professor’s lecture on self-reliance aroused my bristles.

The professor’s power reminded me of my radiologist/oncologist’s threat to block the possibility of a new career to me. He told me, “Advanced degrees are hard for everyone, even for people without your disabilities. It’s unlikely that you will complete this program, and it’s very, very unlikely that you will get a job afterwards.”

I remember especially the “very, very” part of the unlikely. His prediction echoes in my mind every time I hit a bump.

“Maybe my doctor was right,” I think to myself. “Maybe I won’t make it, and I should give up trying.”

But like the little girl who refused to give my brownie to my younger male cousin because I thought that doing so meant colluding with the male chauvinism that so offended me, I keep trying.

I think I will make it. I think I will figure out the technology. I think someone else will figure out the significance of deafness in Guam, and that person will tell me. I think I will figure out how to work in a group and in a loud room.

Like the close of Beethoven’s Fifth Symphony, my finale in this whistling in the dark will be a confident pounding: “See, I can do it,” I will pound.

But for now I’m whistling the beats of a heart that pounds and races with a sense of vulnerability that pisses me off.




Wednesday, October 17, 2012

This election’s personal

My neurosurgery, not counting the cost of doctors' salaries, etc. was half a million dollars. (I’m not sure what was counted and what's etc: the cost of the room and the equipment were counted. Other stuff, I’m sure.)

That half a million dollars also doesn't count post-surgery treatment for a month in the hospital, home health care after that, treatment for pneumonia and the swine flu, MRIs before and after and ever since, ongoing medications, radiation for a second tumor, and on and on.

I am lucky. I've had regular medical care throughout my life. I had health care insurance (and still do). I was born in a millennium when lots has been learned about how to do brain surgery and radiation, minimizing the damage and maximizing the possibility of survival (though there's still a lot to learn.)

Though I was a good risk, I've been an expensive patient. Thank heavens I got sick in a time when my health insurance can't cut me off.

I need for this country to elect a president who cares whether or not I have health coverage. Mitt Romney said that the day he is elected, he will destroy Obamacare. He's running for president and not for king, so he can't really do that, but the fact that he wants to makes me concerned about what he might do.

For me, this time, the election's personal. I don’t usually raise the topic of politics, but this is not a usual time. I need for this country to elect Obama, and I’m asking you to vote for him.

This election is personal for my friend Kathy, too, who has breast cancer. Here’s her experience:

This message brought to you by the upcoming election.

Written 10 hours ago by Kathy Paul

Subject matter alert, disclaimer and firm request: This is a post about my personal reasons for supporting health care reform. I'm a Democrat, and plan to vote for the President's re-election. Feel free to stop reading at any time, if you're offended politically or if you just get bored.

 

Even if you agree with me, I ask that you not use the Guestbook for political comments. If you absolutely must, then be even more respectful of others than you might be otherwise. Murmur quietly, in other words. This isn't Facebook, you know.

 

There are many reasons that I will be voting for President Obama, just as I did in 2008. Health care reform is only one of those reasons, but it sure is a big one.

 

Because I know far too many people in the USA don't have health care of any kind, I have carefully followed the progress of what was ultimately approved as the Affordable Care Act. Including fact-checking with neutral sources such as the Congressional Budget office. Even as late as today.

 

Yes, ACA is flawed. But is it better, for hundreds of thousands of people, than what was there before? Yes.

 

In general, there are far too many people in this country who receive care, if they get it at all, in emergency rooms. Like when their kids get really sick. Or when someone breaks a bone. Or when they have a major, unexpected illness. There are huge numbers of people who are homeless, not through drink or drugs or irresponsibility, but because one major, unexpected illness caused them to lose their homes.

 

So I'd like to talk about the effects of major, unexpected illness. My own major, unexpected illness.

 

I have had medical care since before birth. I have had annual physicals and regular mammograms. Yet, here I sit, with node-positive breast cancer.

 

Right off the bat, I bought, in rapid succession: a diagnostic mammogram and diagnostic ultrasound. Followed immediately by two radiology-guided biopsies. Also a contrast MRI of both breasts and the left axilla. When spread of the cancer was confirmed in the lymph node, I bought a contrast CT of my chest, abdomen and pelvis, a full-body PET scan, and a full-body bone scan. Each was to detect any spread of cancer in certain areas or organs or bones. No one scan works for every kind of tissue.

 

Out of breath yet? Google the cost of a full-body PET scan. But sit down first.

 

The diagnosis/spread now finely tuned by these tests and detailed pathology reports, I bought four and a half months of chemotherapy, mostly weekly, with multiple IV medications and pre-medications each time. Plus the associated weekly labs and doctor visits.

 

Two additional contrast MRIs happened along the way, checking the progress of the treatment.

 

Then came pneumonia, a complication of the treatment for the unexpected illness. That bought me a week in the hospital, plus daily visits from two specialists, plus an emergency x-ray and an emergency CT scan, plus daily labs, plus many, many infusions of antibiotics and pain medications.

 

I will soon have a double mastectomy and an axillary node dissection. That's three separate procedures on one body under the same anesthesia. Lots of pathology slides. I will have several visits to remove my drains... post-op visits... and both pre- and post-OP physical therapy visits to get my range of motion back and teach me how to protect myself from lymphedema, an inflammation of the arm that can happen after all the lymph nodes are removed from your armpit and mess up the lymph drainage in that arm.

 

Are you counting doctors? We're up to 8. Don't forget my primary care doc, who was there at the beginning. Plus the diagnostic radiologist who did my biopsies. Plus the anesthesiologist for my upcoming surgery. I've lumped all the pathologists and other radiologists in as one person. Oh good grief. I forgot the surgeon who placed my port. And HIS anesthesiologist. That's 10. And hang on, we're not done counting yet.

 

After I've healed for 3 to 6 weeks, I will have about 6 weeks of radiation treatments. Daily, Monday-Friday. There is a radiation oncologist involved. Mostly I'll see an amazing tech (like my cousin Kathleen).

 

We're now up to 11 doctors. Plus numerous nurses, nursing assistants, medical assistants, lab technicians, radiation techs, residents, interns and other professionals whose salaries must be built into the hospital or facilities charges.

 

Last on my personal list of $$$$ is medications that I did not need BBC (Before Breast Cancer). I have a 6x8-inch plastic basket, FULL of pill bottles. Plus some creams. And a brand new inhaler. Most of it is at least partly covered by insurance.

 

Just a few more things about costs:

 

Each of my chemo infusions costs between $2400 and $3000+, depending on the meds.

 

My week of pneumonia, just for being in the room (using nurses, assistants, electricity, plumbing, and stuff that had to get paid for somehow), but not including charges for doctors, lab, medication, tests, etc., cost around $15,000.

 

I have no earthly idea (yet) what one radiation treatment costs. Recently, someone told me what their 16-week course of Monday-Friday radiation cost, and I was really glad I was already lying down.

 

On top of that, every time I sit down in the cubicle in the infusion clinic, there is a charge for using that room, just as there will be a per-unit-of-time charge for being operated on in the operating room, and more for recovering in the recovery room and recovering some more in a hospital room for at least one night.

 

Is any of this fair? No! Being charged for the treatment of any illness, regardless of its severity or duration, is freaking NOT fair.

 

But:

 

In this country, we have the facilities and technology for treatment. We depend on those places and that stuff, and it all needs paying for. There's a better formula than the current one, I'm sure.

 

Our medical practitioners have all gone to school—some many years, even more than a decade if they're a specialist. Many do not start their careers until well into their 30's. Unless they were independently wealthy to begin with, most start out in debt, sometimes massively so. They deserve to be paid. Again, the formulas for all of this are not fair and bear examination.

 

So... after all this writing and reading and sticker shock, I want to add that I am very lucky.

 

Yep.

 

I have a good health care policy. I want to mention, however, that I pay for it myself. It's not a payroll deduction, either. If you are paying via payroll deduction, go kiss your employer, because they are paying substantially more than you. My insurance premium is my second biggest expense, after the rent. (I'm self-employed, so in addition to paying my own health care premiums, I also pay my own Social Security tax, Medicare taxes and income tax.)

 

My insurance policy covers a percentage of the cost of my care. It also excludes many things, including most of the cost of the chemo meds. If I didn't have an annual cap on my out of pocket payments, I would never be able to afford this treatment.

 

Again, just in case you missed it, without insurance, and even then, without the "out of pocket" cap:

 

I. Would. Never. Be. Able. To. Afford. This. Treatment.

 

This is why I pay my monthly insurance premium on the same day I pay my rent. Early. After a near miss with a misdirected electronic payment, I actually write the check and I take it to the post office in person.

 

Cancer is a terrifying disease. Even if you don't have it, you may feel concerned from time to time about cancer. At the very least, you may see someone like me and think, "There but for the grace of God, go I."

 

Now, about the election. The threat to gut ACA or portions thereof keeps me awake nights. Before ACA, my insurer could have booted me off the policy at any time, because I'd gotten too expensive. Before ACA, any other insurer would have taken look at my "preexisting condition" and stamped my application with: NO FREAKING WAY. For people like me, this has meant a death sentence, even in the very recent past.

 

So I say, please vote on November 6th. It's a precious privilege we share. But first, please, take a look at anyone you know who has a major illness or chronic condition, and repeat after me: "There but for the grace of God, go I."

 

 

 

Monday, October 15, 2012

That which cannot be spoken

At church yesterday, when Annie shared the struggles of a friend who has terminal breast cancer and who is on a roller coaster ride of good news and bad news, my friend Lori wailed at the prayer. She threw her head back, her body shook, and a deep well of grief flooded the sanctuary.
Lori cannot speak. She was born with cerebral palsy, a degenerative disease, and in her forties, she’s confined to a wheelchair and cannot control most of her body’s movements. She cannot speak and any communication is hard, though she does laugh and cry.
Because some people work to hear her story, we know a little of her pain. We know that her body hurts. We know that she lives in a group home and that relationships there are sometimes hard. We know that she was raped by a caregiver. We know that her parents have died recently. We know that she identifies as a lesbian. (This one is easy, as she sports a bumper sticker on her bright pink wheelchair that lets us know.)
When she laughs, which is often, we all laugh with her. When she sobs, which is rare, we hear a pain that cannot be spoken, and all we can do is sit with her and hear the depth of a sadness that she cannot speak about.
Her pain that cannot be spoken reminds me of Harry Potter’s Voldemort, “he whose name must not be spoken.” As I remember, Harry does speak his name, and in the speaking takes some of his enemy’s power.
I think of the way that language allows me to discover my hopes and fears, my joys and sorrows, and to share them with others. In the words, in the speaking, I find power.
For me, this blog and the books I’m writing have helped me to find words for the hope that I experience, a hope that my life will have meaning that goes beyond these darn tumors.
I experience similar hope in our church’s sister community in Guarjila, El Salvador. This community, which celebrates its 25th anniversary this week, returned to El Salvador’s flattened meadows from years in Honduran refugee camps. Before going into the camps, they—the country’s poor—fled torture and murder in their country’s civil war.
When we visit them and when they visit us, they tell us stories of their tragic experiences, and perhaps in the speaking and in the sharing, they find some peace, some power over their past. In the return, they seek to create a community that honors the lives of each person, even the most powerless.
We speak with them, too, about injustices that they are largely unaware of, when we tell them stories of living as gay, lesbian, transgendered, bisexual, queer persons and our allies. Like our friends in El Salvador, we who are GLBTQ experience others who do not see who do not see us as fully human. We hope that we can begin to be heard.
Perhaps in speaking our pain, we give it a shape that allows it to fit into our lives rather than spilling over onto the whole of our lives.

In another moment in church on Sunday, Jannine spoke passionately about Referendum 74, Washington’s ballot measure to allow GLBTQ people to marry. She encouraged us to talk with those who may not approve, to share our stories and ourselves. She suggested that we post green yard signs encouraging our neighbors to “Approve Referendum 74.”
She said that the “Reject Referendum 74” campaign has begun and that her neighbor posted a red “Reject Referendum 74” sign. What she read was, “Reject Jannine.”

I thought of how powerful her message was, how important that she got to share it and I got to listen to it.
I thought of what it means to be voiceless, and what it means to hear the cries of the voiceless and to stand with them, with their ineffable pain, and to hear them as best I can.
I want to speak up, as a lesbian and a person with disabilities. I also want to learn to hear those who cannot speak. I want to know how to create a world in which we can all be heard.

 

Thursday, October 11, 2012

A Time of Writing: A Time of Healing

Sometimes there are just four people at our writing group. Sometimes there are as many as nine. We meet in the church basement.


First, if someone has brought something, we share a piece of professional writing that we like, maybe a poem or an except. Then the leader for this day gives us a prompt. We write for half an hour or so, share if we want to, plan for the next session, and go home.


The sessions are fun because I am challenged to write on new topics, and I get to see how others begin to play with the same topics. I am always humbled by the writing in the group.


My friend Chris drives me. When we leave the church, a neighborhood cat with patchwork fur is often sitting by the car. As we approach, he jumps on the hood. If we get in the car (and we always get in the car), he climbs on the windshield, and if Chris starts the car, he climbs to the roof. We laugh, and Chris gets out to coax him down. Though he flirts with everyone around the church, Chris calls him “our cat.”


One thing I love about the writing group is that I would seldom think of someone else’s prompt, so in the group I write about topics I would not have written about otherwise. Once, we wrote about something ugly that art might make beautiful. Once, we described what animal we would be if we were an animal. Once, we wrote about black holes, which for each of us, as it turned out, was a kind of metaphor for the universe’s ongoing creation and destruction, its inhale and its exhale.


This month, Chris gave us a prompt. She always gives us a doozy. She thinks of something (like black holes) that I think I have nothing to say about. Then I write for the half hour and am not nearly done.


This month, Chris read to us an article from "Northwest Wednesday" titled, “Three Girls Bakery Celebrates 100 Years.”


The article described one of three women’s businesses that were around in 1912, the only one still surviving. The article told us that in 1912, Mrs. Jones got a business license for a bread company. 

Three ladies owned the business, including Mrs. Jones. At some point, Mrs. O.F. Fredricks and her horse-drawn carriage delivered bread. They expanded to twelve shops for a while, but contracted back to one during the depression, when they moved into the market. They’re still there.


In our writing group, the others wondered about the women: what was it about them that they decided to start a business in a time when businesses weren’t run by women. Two of them were married. What did their husbands think of their enterprise? Why didn’t I think of those questions? They’re interesting.


Elizabeth wrote intensely, as she always does. She created the word “fragilize”: a perfect word. You know just what it means, don’t you?


I thought about how little I knew about this time in history, and about my house which was born somewhere close to the century’s turn. I tried to imagine: What was our neighborhood like when Mrs. Jones started selling bread?


I know that the Lovejoys lived in what is now our house with their son Stanley. I know because workmen in the attic always find boxes of letters from Stanley’s stint overseas during World War One.


We’ve also found Stanley’s homework papers from Franklin High School, which is still down the street. Stanley’s penmanship was impeccable, as I imagine any good students’ handwriting was in this day before computers. He was studying the same concepts in Geometry that Ann’s 21st century math students study. I guess some things don’t change.


Sometimes I try to imagine what life was like in our house then and how different it would have been from the way we live now.


The home, which was built sometime before 1904, was closer to new. Gas lamps lit the home. In the kitchen, Stanley’s mother—or maybe a servant—cooked over a fire in the fireplace that’s walled up now, though there’s still an odd square where the fireplace was, and there’s an old plate that covers what I’d guess was venting for the fireplace. We cleverly cover that plate with a clock.


Mrs. Lovejoy probably did the laundry outside in a washtub, but we have a washer and dryer conveniently in the kitchen where the pantry must have been. We only use washtubs to keep beer cold for a summer party.


I suppose our garage, which is just wide enough for our Honda Civic to squeeze in, housed a carriage. Maybe the horse was in the backyard.


Maybe there was an outhouse there, too. Whenever I think about bedpans in the night, or emptying them in the morning, I know that I was born in the right part of the century. Now we have two bathrooms, one upstairs for Ann and one downstairs with an accessible shower for me.


Of course, there was no television, and I suspect that the den where the television now broadcasts wasn’t there. Maybe there was a porch.


Who else lived in the neighborhood? Some of the houses around us now were built around the same time, I’m guessing. Not too many were built earlier as the long block where we now live had been the city dump, outside the city. When we dig in the backyard to plant a tomato or a raspberry, glass shards and bottle tops always bob to the surface. The dirt is still spitting out the trash from so many years ago.


Stanley was white; at least I think he was. The neighborhood’s racial profile changed several times over the last century. It’s still changing.


I don’t know much about this era in my neighborhood: about the days of World War One, The Roaring Twenties, The Great Depression. Sometime in there, I think around World War Two, it was primarily a neighborhood of Jewish people.


I’ve heard more about the days around World War Two, because that’s when some of my older neighbors moved to this neighborhood and started raising their families.  The neighborhood became increasingly African-American, which is what it was when we moved here in 1996.

Our older neighbors welcomed us and looked out for us, but some of the younger folks in the neighborhood weren't so happy to see us.


My partner Ann and I are white, and one day shortly after moving in, we were walking down Martin Luther King, Jr. Blvd when an African-American man in his thirties or forties slowed his mint green Buick, rolled down the passengers’ side window of his car, and shouted at us, “Go away. We don’t want you here!” I assumed because we are white, but maybe because we are lesbians.


I guess he knew what was coming. The neighborhood’s changing. It’s mostly white people with money to fix up the houses now, and African-Americans are moving further south. My classmate Yvette, who is African-American and grew up here, finds the change sad. I do, too, because for a time this area was such a center for African-American culture. Jimi Hendrix went to high school seven blocks west of here. Quincy Jones played in this neighborhood. So did Ray Charles.


Maybe if I take the long view, I’ll see that the neighborhood’s always been changing. For a while it was a vacation spot for white folks with money; then it was a Jewish community; then Black; then a mixed neighborhood with older Blacks and younger white liberal types (that’s us), a disproportionate number of them gay (that’s us, too), and now there are still liberal white types, but those of us who have been here for a while are older than we were, and the new ones have more money than those who came in our era. (Many of the older black women--mostly women at the end--are dying or moving into assisted living, and their children are mostly selling the homes to white folks with more money.)


Last month on the park’s sidewalk, someone had graffitied in black paint on the walk: Operation Gentrification and Black Love. The graffiti hints at tension about the area’s changes. The graffiti was there for a long time until the clean-up crew covered over it with grey paint. I’m guessing it took them so long because they only had white paint and didn’t want to cover the black with white. That would be too ironic.


I have moved from North Carolina to Texas to Seattle’s University District north of here, to this neighborhood. We live in such a mobile culture that I thought I couldn’t understand attachment to a place.


I’m attached to this neighborhood now, though, and it’s even been hard for me to see the changes over the sixteen years since we moved here.


This used to be more of a racially mixed neighborhood, and there was evidence of the neighborhood’s history everywhere. The neighborhood grocery store was Roger’s, which is now the chain Grocery Outlet, commonly referred to as Gross Out. At Roger’s you could buy chicken feet and pig’s snouts. I don’t know how you would cook them, but I liked it that I lived in a neighborhood where you could buy them.


There was a little store called the Afro Market. It’s not there anymore. Up the street from Garfield High School, just seven blocks from here, Japanese people lived in the boarding houses until their internment took them away from the area.


I like living around so much history. In a history of redlining, so that only blacks would live here, (or really, they wouldn’t live elsewhere) and of Japanese internment during World War Two, there are stories of prejudice and pain but also stories of communities developing and people living everyday lives.


I wonder what the people who live in this house in 50 years will say. I wonder who they will be and what lives they will lead. I wonder what clues we’re leaving behind that say that we were here.


Will the clues show how much joy is in our lives? Will the clues show that we are a community of newcomers and old timers, learning from one another? Will the clues mark a time in history known by a single phrase, like “The Jazz Age”, “The War Years” or “The Depression”?  What will our phrase be? I don’t think it will be “The Great Recession.”


Maybe the upcoming election will determine our phrase. I hope the election will define us in some way that inspires hope and rebuilds health in ourselves, our environment, our neighborhoods, and our world. I think I’d like to have been part of “A Time of Healing.”


That would be good not just for me personally, with my history of brain tumors, but also for my country and my world.