still with the weak chi

I went to a new acupuncturist this afternoon: Dr. Gao, the Real McCoy. That's what his sign should say.

I've been bothered by chemo-exacerbated arthritis in my hands, and I don't want to get steroid shots or have surgery unless I really have to. Dr. Gao did the usual Chinese medicine things: he spent a long time listening to my pulses, checking out my tongue, then rechecking it awhile later. He seemed kind of fascinated by my dry lips, and mentioned them a few times in our two hours together. Your lip dry, he says. Most people don't point out anything about my lips, ever.

He says my system is depleted. All of this he tells me in very broken English, which makes my heart pump with warmth. I just love a good Pekingese-filtered English, and I begin to fall into a mirroring cadence, too.

He goes to move my boots under the table. "I get, I get," I say as he says, "I get, I get." He gets.

He looks at my intake form. "You have the cancer."

"Yes. Bress. Lass year. I lose both bress. I had the chemo, too," I say.

"Aiya, the chemo is bad-very-bad," he says. "Bad for body."

I can't give one of my standard responses, like "True, but it sure as heck beats the alternative," because I know he wouldn't follow me through that sentence. I say, "The chemo was bad for my body."

He puts a bunch of needles in my hands, plus several on my face and scalp. He connects some of the needles to a machine that sends electrical pulses my way, and my hands twitch while I rest. Dr. Gao's hands are warm and dry, and are shaped like my dad's. I resist the impulse to ask him if I could just hold his hand for a minute, or maybe just look at it closely, smell it. I'll bet there's some garlic within it, just under the skin.

He tells me I should not do detox. Too deplete. Detox only have excess chi. You have deficient. Need protein. Need get a stronger.

I just want to hear him talk. I want to hear the broken sentences. They are like protein to my heart.

Your mama American? Waah! You look Chinese! I think you not 55. I think you young. You just deficient in body. Chi stagnant. I think maybe body missing part cut off. Herb maybe help.

I am taking all this in. He is hurting my hand, actually, pushing my tender joints with his strong, brown, dry thumbs. He presses hard where my joint is swollen, and I try to be stoic. I call on the Lamaze breathing techniques. He is both brutal and tender with my hand. He wants me rest hand, get a strong, too. Then he asks with concern, "You do hand job?"

No, I tell him. I don't really use my hands very much in my work. But somehow the question? Little bit break spell.

bad mall moment

What a mistake. When T'ai went to the mall to get a quick haircut today, I tagged along thinking what the heck.
Was everyone there? Were you all there? I'm guessing you were, but I couldn't have found you if I tried. The crowd was just too massive. Did they add a new holiday? Is there something coming up that I should know about?
At one point I was walking alongside a man and his three-year-old. We were all moving slowly, like so much cattle. The man's wife must have been well ahead of us in the herd. When she started to gain too much ground, the man said to the child, "Shout for Mommy."
"MOMMY!" the kid shouted, with impressive force.
"Louder," ordered the dad.
"MOMMY!!" the kid shouted. This was loud, like you'd shout on a remote Kansas farm when there's a twister coming and the kid and her dog still haven't come home.
"Louder," said the dad.
"MOMMY!!!!!" the kid shrieked. People threw smoothies into the air, The Gap's windows rattled, and every woman who had ever had a child turned her head -- except for Mommy.
"Ach, Jeez," the dad scoffed. "Never mind."
That wasn't the bad mall moment, though it will stick with me for awhile. No, the bad mall moment came when I tried on a couple of sweaters.
Last winter I had the bald head to distract the eye. It's like those perception tests where you tell people to focus on the basketball being tossed around and while they're doing that, half of all viewers fail to see that a gorilla is walking through the scene. http://www.youtube.com/watch?v=2vFAQC7FvKc Last year, my head was the basketball (in more ways than one) and my concave chest was the gorilla that you could easily miss. 
Now all I have is this freaking gorilla suit. 
Sweaters (other than the heavy winter ones) and shirts are cut not just to make room for breasts, but to point a tiny neon arrow toward them. Trying on a simple sweater in the dressing room was both depressing and comical. I don't know how to describe how it looked, but it felt like being caught in the rain in a thin t-shirt, in a bad way. Only without nipples or breasts. Or rain. It just felt like being caught.
Suddenly I was not looking forward to spring, which I think may be a sign of insanity at this point.
I know! I know! No one is looking. That helps the head, but not, well, the ego. Tell a 55-year-old woman "No one looks at you anyway," and, though true, it is not much comfort.
I got kind of choked up on the way home, and talked to newly-shorn T'ai about today's dressing room failure and the likely wardrobe malfunctions in all my tomorrows. He held my hand. 
"That stinks, Mom," he said. And somehow I felt comforted. It turns out that when my heart is comforted, my ego pipes down.
That's a good thing, because the gorilla suit is here to stay, for as long as I am. I just need to figure out how to love it.

in some important ways

In some important ways, it's easier to be the driver. You know how aware you are of the stopped car in front of you; you've got it all under control. You see the black ice. You've already spotted the pedestrian. The passenger has to decide what to point out, and usually waits until she can't stand the suspense anymore -- this may be a matter of a second, but still, it's stressful.

And if the passenger is generally a more cautious driver herself, well, she might occasionally, reflexively, grab the armrest when the other person is at the wheel. The passenger's right foot may press the floor. Since the driver generally does have everything under control after all, the passenger has learned how to pretend she was going to shift toward the armrest anyway. She was going to take that sharp, deep breath. Ahhhh, that air feels good.

Laura is leaving her job in June and is going to work on her own. You know her. Laura, the major breadwinner in the house. The one who actually receives a paycheck at the same time each month.

The one whose job has provided us with healthcare.

I'm sure Laura, who is driving along singing "Ohh, Freedom! Ohh, Freedom!" at the top of her lungs, sees the nails scattered across the pavement, the flock of geese waddling through the traffic, and the mattress that just flew out of the car up ahead. But I, strapped into the passenger seat and nervously humming "buddy, can you spare a dime," am quietly gripping the armrest and taking lots of sharp, deep breaths.

It's not just money I'm worried about. I'm sure she'll find coaching and consulting gigs, and I'm sure we'll learn how to live without a paycheck. Hey! I was going to take that sharp breath anyway.

But the search for healthcare on our own has brought up old, dark, sad feelings for me. When Laura called USAA to inquire about their insurance (she qualifies because her dad was in the Air Force), she explained our relationship and my health situation.

Their response was, "Ma'am, we wouldn't touch paula until 10 years after the end of her treatment."

You know, you feel pretty vulnerable after a cancer diagnosis. Sort of forever, somewhere inside. The idea that this insurance company would rather insure a 65-year-old me than a 55-year-old-possibly-with-a-target-on-my-back me is hard to take in.

The dark feelings were right under the surface. How could I possibly have demonstrated more of a commitment to beating the cancer, beyond sacrificing both breasts? Did it matter to the insurance company that my nodes were clear? If that doesn't matter to them, does it matter to my prognosis? Why wouldn't the insurance company bet on me?  It stings that they bet on the cancer instead.

So we have some things to figure out, and you know how I feel about incomplete puzzles, incomplete anything. But I feel like I owe it to Laura to be as supportive as possible as she makes this long-awaited change in her life. If I decided I wanted to open up a practice on the moon, she would be supportive of me. She'd have her doubts, but she'd want me to have what I wanted. She'd also know I could charge a gazillion dollars for ten minutes of therapy to anyone who showed up in my office on the moon. She believes in me.

And the truth is, Laura has had to sit in the passenger seat, gripping the armrest, while I steer as carefully as I can through the creepy villages of Cancerland. It's been hard on her. I really do think that in some ways, it's harder for the families of people with cancer than for the cancer patient herself. Not in all ways, but in some really important ways.

It's Laura's turn to drive.

January

It's January 7th, 2011, and I had thought that by now we would all be zipping around with solar-powered jet-packs on our backs. Or riding along in trains that take you to places where there are shared electrical vehicles waiting to get you to each other's houses. Or traveling through a pneumatic tube network where you climb in and snonk out at any given destination. It is a disappointment to me that we are still tootling around burning oil and crashing into each other at high speeds on corroding highways.

Still, I am profoundly grateful to be here on January 7th, 2011.

Back in January 7th, 2010, I am having my first chemotherapy infusion, hooked up to receive a concoction that I hope will allow me to revisit the memory for many years to come. I am not more frightened in January 2010 than I will be, in my secret heart, in January 2011. Back in 2010 it is good to know that I have ammo. In 2011 most of what I have is hope -- though I'm glad for the gift, I liked having those chemical bullies on my side a year ago.

January 7th, 2009, and my sister-in-law, Ruthie, is still alive as the sun rises. She can no longer speak to us, but is visibly working through something in her mind. In her final days, she seems to be staring at the face of Mystery, examining it with both wonder and consternation. She dies in her sister's arms late this morning.

I pause from this writing to tell my beloved sister Ellen that I would feel lucky to die in her arms. May it happen many years from now.

January 2009, and my mom is still alive, though she will take us all by surprise by dying of a stroke next month. She tells me she isn't sure what her "assignment' is now that Pop is gone. She says she is not lonely, as she talks to Pop all the time -- but that for the first time in her life she is bored. I do not grasp how important that is, how much it conveys her readiness to go.

January 2008, and both parents are still here. We are taking a slow walk around their neighborhood, bundled against the cold. I am holding Pop's arm, and he is talking about how tired he is getting lately. He stops to sketch a goose floating on the cold river.

The years go by, and in memory they can go forward or backward. 2007, 2002, 2006, 2005, 2003, 2004, 2001. There are bright spots of a remembered moments, but even the most recent decade is already blurring. At the age of 85, my mom wrote an autobiographical essay. There is all of one byte devoted to raising us: "The honeymoon cost 37 dollars and we took a week of side trips into New Hampshire and Vermont," she writes. "The next era was the fastest. . . . A blaze of babies, diapers (I thought I'd never outgrow them.) PTA meetings, 4H club, winding up with teaching and College loans. Some day I may embroider this, but now it's a blur that has passed in the time it takes to type it. The grandchildren trooped along so close behind that I sometimes confuse the generations."

Ellen and I read Mom's essay together. Our response is in unison: "What the heck!?" It's like playing a major role in a movie that runs for 50 years and then finding out you've been edited down to a walk-by cameo.

January 2000, and I will turn 45 in the fall. Since I was a child, I have been imagining the arrival of the year 2000 and the strangeness of the possibility of being 45. The only strangeness as it happens is that it is not strange.

January 1993, and I am falling in love with Laura. I am terrified of what this may mean for my life. Glen and I can't find each other in the howling storm of feelings. That we lose our bearings so quickly stuns me, and I re-experience that shock for many years to come. I learn through this that all relationships are vulnerable. Not fragile: vulnerable.

January 1990, and Yani will be born this month. Ting is not yet three years old, and as we cuddle together in front of a fire she tells me what she remembers of her birth. There are vivid details she recounts that I never told her about. She looks at me and asks if she can go back in there once the baby comes out.

The kids and I are all home in January 1990 because I have left Trinity after 8 years. I leave Trinity because I am not sure who I am if I am not a dean there. That feels like such a hazardous sandtrap that I decide I ought to leave. Around this time I cut my long hair and the president of the college asks me why. "I felt too attached to it," I tell him. He tells me that is the most absurd thing he has ever heard. It still feels right to me.

January 1984, and T'ai is a newborn. I am terrified to feel the depth of love I have for this child, to realize that for the first time in my life something, someone is carrying around the entirety of my heart. That my life, my sanity, my connection to the world seems to be in someone else's hands, and that if I were to lose him I would likely lose my mind. In 2011, I am still trying to figure out how to take my children off this hook, how to disentangle my happiness from theirs.

January 1979, and I am in Guatemala. Edmer's family gives me a beautiful wool poncho for Christmas. I am desperately homesick. I don't know how to get out of my relationship with Edmer, so I bring him home. He speaks very little English, is entirely dependent on me and loves me, too. Within weeks I see my mistake, see the brick wall I am steering toward. But I keep moving forward, driven by my fear of hurting him. It takes me a year and a half to find the courage to speak my truth. I begin to actively study courage and try to figure out how to nurture it in myself. Developing courage becomes a lifelong effort. I feel like it is remedial work.

January 1976, I am doing a work term in Cincinnati. I live by myself in a tiny apartment and get by for months on barley and cheese, cooked together on a small burner. Each night it is delicious. I walk home in the wintry dark from the Planned Parenthood where I am doing an internship. I have no phone and know no one in Cincinnati. Most evenings I do not speak a word. I sleep like a bear.

January 1973, and I have just finished high school a semester early. I am working at a bakery, and pride myself on not having a single bite of the goods. The last hour I work there, I pop a danish into my mouth, then a cookie. I walk home mad at myself for giving in to this small pleasure and theft.

January 1972, and I am in my bedroom listening to music and playing with the dripping wax of a candle. I do this for hours, and it is only in the retrospect of adulthood that I understand it as my first deliberate experience with trance.

January 1970, and I am a bopper hippie, wearing a black armband, marching against the war, and deep into Quakerism. This cold night I am playing ping-pong in the basement with Ellen and two friends. Between ping and pong, we are talking about life. I say that I love Everyone. Peter scoffs. "That's impossible," he says. He is so clearly my superior in verbal prowess, and I tearfully flounder as he challenges me, hard. Soon he sees his moment and says, "Do you love me, Paula?" I run out of the basement crying, "I HATE YOU!" I am so frustrated that I can't hang onto my little seed of conviction.

January 1967, I am 12 and have a wicked crush on Charlie Reyburn. I join the Episcopal church choir just to be near him, to hear his soprano solos. He never returns my interest. When we move my parents out of their house in January 2006, I see a day-glow heart with "P.C. + C.R." on my old bedroom ceiling. Some time in my 30s I see Charlie get off a train and kiss a woman. I feel a pang of longing that takes me by surprise.

January 1964, and we still live on the old farm. Mom asks us to polish the newly waxed floor by sliding around in our socks. Ellen and I put on Tchaikovsky's Italian Symphony and skid across the piano room floor. It is our favorite chore.

January 1963, I am eating small balls of snow that have matted my mittens. I am at the edge of the Joyces' pond, using a stick to get the ice out from the double blades of my skates. Soon I will graduate to single-bladed skates. I will miss the double-bladed ones for the rest of my life.

January 1960, and Ellen and I are playing "Bettie and Joan" in our adjacent twin beds as the snow falls outside. Joan is our mom's best friend. Ellen is so good to always let me be Bettie. Even at five years old, I realize her kindness, but I am unwilling to reciprocate and let her be Bettie now and then. It is the first time I am aware of hoping no one notices how selfish I am.

January 1955, and 6-year-old Lee, 4-year-old Kevie, and little Ellen are sleeping in the house. My parents are snuggling under the wool blanket in their double bed. This is as good a night to make another baby as any, and they do. That January night I am as tiny as can be, but already I hope to live.

Pendle Hill

This is the last day of my 5-day sojourn at Pendle Hill, a Quaker community outside Philadelphia. It's been just right. I have spent most of it writing in my closed room, a simple space in the brick "Main House." I go down for meals or the daily Meeting for Worship, or to raid the granola stash. I've had some good walks around the property, including several rounds through the bamboo labyrinth.

The people who live here are kind and welcoming, as you might imagine. They've chosen to be part of a very deliberate community, and everyone helps out with dishes, furniture repair, folding laundry. There are several students here -- most at least 40 years old -- who have come for spiritual guidance, Quaker study, and Pendle Hill's courses on art and spirituality. The students come from all over the world and stay for a couple of months or longer.

I'm comfortable here, in a Quaker setting. If my life circumstances were different, I could actually see myself living at Pendle Hill for an extended period of time. But if I lived here, I'd want to shake things up just a bit.

There's not a lot of humor, self-deprecating or otherwise, and I feel myself keeping my own sense of humor on a leash. A number of people sojourn here under spiritual duress: some have lost their way spiritually, some are just pretty serious folk. By definition, they're comfortable with silence, and sometimes that energy feels a little heavy. You don't hear a lot of guffawing.

Yesterday I made the smallest joke and my lunch table cracked up with surprise. Funny seems to be a surprise in a spiritual community, and that is something I'd want to be otherwise.

But I'm grateful to this community for taking me in for this sojourn. I am leaving a donation for the student from Benin who arrived a week ago and is as skinny as a broom. He has been cold ever since his plane touched down. I want to buy him some long underwear for the winter.

I'm also going to refresh the "Bacon Endowment" for the kitchen. Ten years ago a sojourner left a $75 contribution to buy a few bacon breakfasts for the community. They ate their way through that in short order, but became attached to having bacon now and then. Now it's a treat every couple of weeks. Everyone came for bacon breakfast a few days ago. We ate strips of a local, organically raised pig, which made us feel better about the indulgence. But I think we would have eaten bacon imported by fossil fuel from Argentina and carried the long way around the globe, it smelled so good.

Because other than that, the food is mostly vegan, and local produce. In December, the pickings are slimmer than other times of year, and the emphasis is on...let's say the durability of the cellulose. Last night was the weekly silent dinner, and we ate raw cabbage and onion, cooked kale, and a lentil salad. Since there was no conversation, the crunch, crunch, crunch throughout the dining hall was pretty funny. Thank goodness I wasn't allowed to say anything. I was so tempted to moo.

sojourn

For more than two months, I sat on the waiting list for a week-long meditation retreat that begins tomorrow. One hundred people will spend a week in silence together, alternating sitting meditations and walking meditations. I've been looking forward to it. But I haven't been able to get excited about it because of the waiting list thing.

After you pay the retreat fee, you wait to see if others bail. I start off somewhere around number 30 when I sign up, and soon am number 26. By late October I'm 13th in line. Then I don't hear anything ever again. I begin to wonder if this is a test. You clear your week, and wait to see if you are called. It's a game of Zen chicken.

I'm doing pretty well with it, I think, though the suspense is driving Laura nuts. Last night she reaches the end of her rope.

"You haven't heard from them??!! I'm going to call them and pretend I am you."

"No, La," I tell her. "We're supposed to wait. I'm on the waiting list."

"But this is ridiculous! You've cleared a whole week and you have no idea if you're going to be able to go."

"But it's kind of interesting," I try. "It's like those trips where people aren't told where they're going until they get there."

"This is ridiculous," she mutters.

I start to itch, like you do when you see someone else scratching. I kind of would like to know where I'm pitching my tent next week. I'm up for the retreat, but I'd also like a week of writing. I've been imagining both with equal interest and anticipation. Which will it be? And what if I could choose? So often I don't choose.

So last night I write to the retreat center. "Uncle!" I say. "Please take my name off the waiting list for the retreat which begins any second now. I fold. I am not Zen enough to wait any longer."

Actually, no. I don't say that. I do say Uncle, though, and then after I send the email I worry that they won't understand that. I'm afraid they'll think I'm addressing them using the Chinese term of filial piety. (This reminds me of how my beloved brother Lee once advised us younger siblings as we entered a large party of mostly Chinese adults: "Don't worry. Just call the men 'uncle' and the women 'auntie' and you'll be okay.")

So I lost the game of chicken. And now the world is my oyster!

I hate oysters.

Laura and I begin to scramble to find the right thing to Occupy me next week.

I don't want to stay at home, as much as I love home. Give me a totally unscheduled week at 15 Main Street and I will spend it oiling squeaky doors, taking out the recycling one yogurt container at a time, checking out The Messiah flash mobs on YouTube, and cooking for the masses.

"Don't stay here," says Laura wisely. "You'll end up buying a dishwasher."

I start looking at B&Bs within walking distance of grocery stores. Laura is looking at yoga retreat centers in Puerto Rico, beach rentals in Florida, a small island off the coast of Brazil. When I look up from my computer, pondering a B&B run by Fred and Ethel and their three dogs, Laura is on her computer looking at Club Meds. Club Meds, she's looking at!

"It doesn't cost anything to look," she says without batting an eye.

"La," I tell her firmly. "I am not going to tell my clients that instead of the meditation retreat I went to a Club Med. I won't be able to face them."

Here my mind gets stuck on how it is that Laura loves me better than I love her. Not more; just better. If I break something, if I leave the oven on, if I screw up somehow, we all agree that it's a good thing it was me and not Laura. We laugh about it, but deep inside I hate how true that is.

If Laura had a week to play with, I would try to make it seem like a fabulous idea to do it on the cheap. Hey! How about you go stay with your mom? It's so comfy there. Or: how about you curl up near this cute, little, shedding Christmas tree we picked up at Lowe's? You could sit right in front of a warm fire. I would dig up lots of reasons not to go whole oyster, while hoping it sounds like her happiness is my top priority.

I have so much to learn about being a good person.

I am leaving Sunday morning and will write more from the retreat I have chosen.

november 30 2009

A year ago yesterday my breasts were sliced off and carried to a lab without me. I still miss them, miss the nerve endings that enveloped them. Not so much for the fun reasons you might be thinking of, though those fun reasons would be frosting on the (cup)cake(s). I just miss being able to feel anything at all in my chest. I miss having breasts as a visible identifier of membership in the female gang.

Last night Laura told me stories about the hours around the surgery -- she reminded me of the huge inflatable warmer they cover you with before surgery. Warm air is pumped through this body-shaped balloon and in the last moments before going under you look down the length of your body to see Dolly Parton's buxom outline. The balloon blanket warmed me up, but my mind made the shape meaningful in ways that weren't comforting.

In the recovery room, I apparently was pretty upset. I didn't know this part. I was crying a lot, saying over and over again that I was scared. Laura says I alternated between wailing and saying hello to my family as chipperly as I could: "How's everyone doing?" then "Waah! I'm so scared!"

The nurse was nodding slowly as she mouthed to Laura "NORMAL. This is perfectly normal."

A volunteer was doing Reiki over my bandaged chest. Laura thought she seemed to be faking it.

I've got a client whose mom is about to have her third surgery to finalize the shape of her prosthetic breasts. Her incisions got infected after her mastectomies, and then she got another infection when they put in the tissue expanders, inserted to stretch out her skin to make room for the silicone implants. It is hard for me to absorb needing the illusion of breasts so much that you'd put your body through all that, especially after it has dealt with cancer. It seems like whipping a horse after a long race.

And yet I do miss having breasts. I don't want to want fake ones, but I envy those who get them without this likely-to-be-chronic ambivalence I carry.

For me, hearing about other people and their prosthetic breasts is like watching people heading out to a very fancy dress ball. I feel left out and somehow less than, but I also know I wouldn't feel comfortable if I tagged along, no matter how fancy my get-up.

The past year has been packed with tired horses, hungry wolves, existential sudoku, footy pajamas under a fancy skirt, and nothing, ever again, beneath my shirt. It's also been full of baby giraffes, snowy owls, noble gladiators, and the miracle of a body healing as much as it can.

I think it's been a good year.