Future Present

Here’s the thing–what with one thing and another in my life, I learned long ago that the future was uncertain. The corollary to that, of course, was that I had to take whatever immediate gratification was on offer. I have never had a substantial savings account. I have no 401k, or retirement savings. I can’t save for a vacation. I’ve always seen this as a disadvantage–and it has been. Not being able to believe in the future has meant that I have lived in the eternal “now,” and sometimes that was a nice place and sometimes it wasn’t. Moreover, my passage through “now” has been a bumpy road–lovely highs and terrifying lows, many of which might have been smoothed out by a little planning and foresight. And those are, regrettably, not within my skill set.

When I got the cancer diagnosis “now” was terrifying. I rushed around and did all the things that my “now” demanded–I made a will. I signed an advance directive. I signed a power of attorney. I added my son’s name to my bank accounts. I got the car ready for him to take his driver’s test. I paid the bills ahead. With the help of my amazing sisters I found a top-notch cancer treatment center and scheduled my surgery. With the help of my mom I found a ride up and back. With the help of local friends and some of my friends from back in my college days I’ve arranged for The Boy to get to school and back, and have company for the nights I’m gone, if he wishes it.

Then I was ready, and it wasn’t yet Christmas. And here’s where the gift of my “eternal now” comes in. Because I had done everything I could do, I was ready to go to the hospital. And because it had now been a couple weeks, the “now” of the diagnosis had faded into the past. The “now” in which I have lived the last two weeks has been great–we’ve had a lovely Christmas. We spent time together. I enjoy my work. I’ve been doing creative stuff (yet another uterus picture, since you ask–one that sent of of my son’s friends shying backward like a startled colt when he saw it yesterday, then provoked spasms of laughter). I like my clothes. My house is a mess, but that’s all right, sort of. I’m doing important things in my “eternal now.”

If I had the gift of foresight, this might be much, much harder. As it is, I know in theory that this might not turn out well–and so I’ve done whatever I can to hedge against that. Some of that creative writing I’m doing is stuff I want my son to have–stuff that I think he might find comforting and important if things go really, really badly. That’s the reason he’s now on the bank account, and the car’s ready as soon as he can take his driver’s test. That’s why we have a backup network of friends and family.

Things might go badly. I might die. But I’m not dying today, and chances are I won’t be dying for at least a few months–even if the very worst happens. So for me, in my “eternal now,” things are great, and I’m holding onto that.

I’m not stupid, even if I am shortsighted: I know things are going to be worse before they’re better. But for right now, they’re good. And I’m relishing that.

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Dead. Wrong.

So tonight I’m making meatballs, bitterly regretting that I mixed up the whole danged package of meat because, let’s face it, you can only cook so many meatballs before the whole thing starts to get a little nauseating, and listening to Tig Notaro’s “Hello, I have cancer,” set for about the bazillionth time.

As she always does, Tig makes me think of my Grandpa, who was both a great storyteller, and a lifelong thwarter of Mr. Death.

Mr. Death and I have been having some conversations lately, what with the cancer diagnosis and the ongoing uncertainty about what stage I’m at–the CT scan hints at very, very, early, but I keep wondering–did they scan everything? Did they scan my armpits? I’ve got some weird warts there. How about my neck, jaw, and face? I’ve been prone to glandular swelling for years, and my non-smoker, non-chewer brother got salivary gland cancer when he was in his thirties. How about my brain? I know they didn’t scan my brain, and so far two or three of my dad’s ten sibs died of brain cancer.

Cancer’s an old frenemy around here–so far we’ve had brain cancer, uterine cancer, ovarian cancer, salivary gland cancer, pancreatic cancer, and thyroid cancer in my immediate family, and those are just the ones I can list off the top of my head. I know they scanned my torso, but what about all the other spots?

So Mr. Death and I, we’re talking these days. He’s saying he’ll get me, and I’m saying, don’t be so sure, and he’s saying I get everybody, and I say not when they’re in their fifties, and still have a kid who could use a mom for a while yet.

I feel comfortable sassing Death this way because sassing Death is also in my family. My grandpa and Mr. Death had several intense conversations, and until the last one Grandpa won every round. Mr. Death threw everything he had at Grandpa–black widows, stampeding cattle, loose concrete drainage tiles, a brain tumor, and a steep flight of stairs–and what did Grandpa do? He laughed in Mr. Death’s face. And then he made a story about it.

Mr. Death also had an unfortunate encounter with my great-aunt. Great-Aunt Pearl was old. She was blind and deaf. Most of her friends and peers were dead. Her family mostly lived far, far away. And so it was when the doctor palpated her abdomen and found a large mass Aunt Pearl opted to simply let nature take its course. She was old, lonely, and ready to go. Her family migrated home like salmon. They said goodbye. And then a few days later Aunt Pearl had the mother of all bowel movements.

The mass was gone. It was a miracle. But Aunt Pearl was still very much alive, and now her family had to figure out a way to tell her that she was likely to remain that way for the foreseeable future. How do you tell someone who is Ready to Go that there’s been a delay? I don’t know what they finally did, but it can’t have been an easy conversation. As I recall, they were mostly worried about how pissed she was going to be at having Mr. Death stand her up.

Mr. Death’s one undisputed victory was probably Grandpa’s funeral. It’s a long story, which is best told with lots of voice impersonations, dramatic hand and body gestures, and funny sound effects, but the short version is that my uncle, who was videotaping the service, had a heart attack while he was taping. Since he was sitting down no one discovered this for far longer than I think any of us would have wished. When they did figure out what had happened things got very complex, very fast. My Dad and uncle administered CPR until the paramedics arrived, at which point everybody realized that there wasn’t room for all of Grandpa’s mourners AND the paramedics. Everybody picked up their chairs, went out in the hall, and waited for the funeral director to find them another chapel. Meanwhile, the mourners tried to sort out who would stay and bury Grandpa, and who would go to the hospital and support my aunt. It was a trying experience for all concerned.

Grandpa’s lifetime of survival stories, and most of all his funeral, changed my view of Mr. Death and how to handle him forever. I don’t know if this will work for other people, or only for families like mine, where we just plain can’t get the hang of dying gracefully, but here is what I know. Dark times come. You survive if you can. And then you make a story about it. If Mr. Death wins your round, you can know that somebody else will make a story about it.

I’ve been thinking about who will tell my story if Mr. Death gets the best of me. While I think some of my family would do a good job of it, there are others who, to put it kindly, would Not Photograph Me From My Best Side, so to speak. I don’t want them telling my story, I want to do it myself. This means I must make every effort to survive. I have to make sure  the voice impersonations, dramatic hand and body gestures, and funny sound effects get done right.

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Making Peace With Our Lady Parts

So anyhow, to borrow the opening of Tig Notaro’s amazing routine, I have cancer. Luckily, in my case it just seems to be a very small, infant cancer, more of a cancerette, though we’ll know more after surgery, when all of my lady parts have been excised and the doctors can really take a look at the Little Stranger that has taken up residence in my son’s old apartment–the one he outgrew nineteen years ago.

To be honest, the news pretty much freaked me out, though I should have been expecting it. There’s lots of back story in my previous post, so I’ll just say here that I’d been bleeding for far, far, too long, that my son finally sat me down and made me google my symptoms, and that I wound up in the last place in the world I wanted to be–in a strange OB/Gyn’s office (they are all strangers to me–I haven’t visited one for something like seventeen years), locking up all my joints to keep from shaking, trying not to cry (there are good reasons for that seventeen years), and looking at the walls for distraction. And that’s when I saw it.

“My god,” I thought. “It’s a cow.” Which is not what the artist had meant and, as it turned out, not what my doctor had meant when she hung it up on her wall. But the cow was what I needed to see. I spent the rest of that horrible half of my life (hey, it felt like it) staring at that diagram. “Yes,” I decided, “it’s definitely a cow. With big curvy horns with eggs on the ends–gold eggs, because this is a cow that likes jewelry…”

Because I wanted to think about something–anything–except what was happening between my legs, I reported my observations to the nurse, who was very nice about it. She didn’t see the cow, she said, but then she really didn’t have to, did she? I saw it, and that was enough. The doctor finished. I put myself to rights, shot a quick photo of the diagram, and limped out of the office, drained and shaking–but with the seed of an idea.

At home, I opened the photo and turned it into Illustrator, and then set about painting the cow I saw. I called The Boy, who serves as my focus group in projects like this. “What do you think?” I asked.

“Maybe make the horns solid, not cutaways…” he suggested.

“Yes,” I agreed eagerly. “And I could make them carved into spirals, with precious jewels wrapped around them…”

I went back to painting. He went back to playing his game.

That night at supper I said, “I’m thinking that there’s a frog in there, too…swimming, with tadpoles that look like sperms…”

“Uh huh,” he said, because he understands that when I say things like this I’m not looking for an opinion. I’m thinking out loud. He only has to listen.

“The cow needs a red river, because periods,” I reported a little later. “And there need to be flowers in it, because in that blood lies the possibility of life.”

“Okay,” said The Boy, wincing a little. He’s evolved, but still human.

I went back to painting.

“It’s going to be in the desert, because menopause,” I told him. “But there needs to be a flower and a bee, because the birds and the bees.”

“Mm,” he said, caught up in a boss battle.

And then it was done.

I turned to the frogs. Long, graceful arms, spindly, pathetic back legs, waving water weeds, spermish tadpoles doing a synchronized swimming routine. And bathing suits on the frogs with flowers and jewels, because these are Middle-aged Lady Frogs who like bright colors, costume jewelry, and Slenderizing Lines.

In fact, they looked much like my Grandma, and, increasingly, me. Middle-aged ladies, carrying eggs…and so the farm wife was born, out in her overalls, carrying enormous buckets of eggs. And all around her, gigantic, fat hens with tiny heads, because after all, what would a hen do with a brain? A hen’s job is eggs. Lots of eggs.

And then I thought of ballerinas–middle-aged, portly ballerinas with saggy underwear. The Boy suggested that the saggy underwear should hold a well-used pad. And the picture became a metaphor about body-shaming, about how we women spend so much of our lives concealing the biologic realities that shape many of our days, about the risk of exposure if we choose to ignore those realities. I started the drawing. And then I went in for the D&C, and the doctor told me the news was not good.

“It’s cerous carcinoma,” she said.

For a second I thought she’d said it was “serious carcinoma.” Is there any other kind? I wondered, and then my mind went blank, and I couldn’t catch my breath. She went on to explain, and to give me some idea of what I needed to do next. This was good, because my future had just shut down in front of me. I couldn’t breathe. I couldn’t talk. I couldn’t think.

“Is your son there?” she asked.

“Yes,” I croaked.

“Would you like me to explain things to him?” she asked.

I handed him the phone. He listened. He asked a few questions. He hung up. And then we clung to each other, and cried.

I called my sister, who agreed to tell the others who had been waiting for the diagnosis.

When my brain came back online I thought about my paintings, but the thought of my little ballerina with her overflowing pad was obliterated by the diagram I had started with, consumed by a black, lobed mass, growing and spreading and unspeakably ugly. There was no picture there.

I thought of my son, and the fear in his eyes, and realized that the cancer was real–but so was the fact that I am a mother, and as a mother I needed to be strong. You mothers who have faced a diagnosis like this understand what I mean–the cancer is real, and terrifying, and above all else we want to soothe that fear for our children. We have cancer, but we are still mothers, and we still reach for our children, and seek to give comfort, both now, and in the future. “How do I want him to remember me?” I asked myself.

And I knew. I wanted him to remember me strong, loving, caring, smart-mouthed, and laughing. I wanted him to remember me engaged in my life. And it didn’t matter if I had six months or six centuries left. Once I’d taken the steps I could to eradicate the cancer, I couldn’t control what might happen. But I could absolutely control how I met it. I could remember that even though I have cancer, life goes on, and I can continue to live it. I didn’t want my son to see a mom who fell apart before she had to.

That day may come. I’m still in early days, when the effects of the D&C have left me feeling far better than I’ve felt in years–so much better that I can joke that cancer seems to agree with me so far. But I’m not stupid. I’ve seen cancer. I’ve seen treatment. I know it can get ugly. But it’s not ugly yet. Now, my son and I go to movies. We play games, we laugh. We joke. We entertain his friends. Our life is good. And I’m loving every minute of it, even as I make plans to have my uterus and ovaries removed as soon as possible, even as the knowledge that I have cancer knocks my breath out of me for a second sometimes, even as I make the appointment with the attorney to write my will, my power of attorney, my advance directive, even as I arrange with friends to watch out for my son while I’m away in the hospital. Because the cancer is real. But so is the rest of my life. And for now, it goes on. I’m finishing up a couple books I want to make sure my son has. I’m painting the illustrations. Yes, life goes on.

I know it does, because I’m painting again, and I’m writing, and I am still a mother who loves her son, and whose son loves her.

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Making Peace With Our Lady Parts: Why Hillary Clinton’s Bathroom Break Matters

Soraya Chemaly has written an excellent piece in the Huffington Post about Hillary Clinton’s bathroom break at the last presidential debate, and what it reveals about institutional sexism and the lack of respect for and understanding of women’s bodies, and what makes us human. Under normal circumstances I would perhaps nod, perhaps feel a twinge of fellow-feeling at the thought of Candidate Clinton having to stand in the bathroom line–something we women understand all too well. Who among us hasn’t pushed open the bathroom door, only to have our hearts sink at the sight of a long, long line of women and girls, snaking along the cubicle doors, past the sinks and towel dispensers, and sometimes out into the hall? Who among us hasn’t stood with an aching belly and crossed legs, terrified that our internal systems might fail us before we get into the stall and managed to get our pants pulled down far enough to pee without soaking ourselves? For women who have borne children–particularly for those who have borne several children–the problem is compounded.

There’s a case to be made about the sexism of our public spaces. But right now I read this piece with far more than a wince, because for me right now, and for thousands–perhaps millions–like me, this is more than just a matter of discomfort and quite possibly humiliation. It can be a matter of life and death.

For far too long, matters relating to “lady parts” have been dismissed as the sole province of women–the how and when of birth control and limiting childbearing is still seen as primarily a “women’s issue”–and conservatives have used shame, religion, and violence to strip women of the very tools they need to do those things effectively. Consider conservative statements about incest and rape, and their utter refusal to treat them as anything other than women’s responsibility, or God’s will. Childbirth as a result of incest is “beautiful.” Raped women gave “mixed messages,” or “dressed provocatively,” or let things progress beyond “the point of no return.” In other words, a victimized woman is to blame for her own victimization.

The answer in every case is, for conservatives, simple. Women must modify their actions to “protect” men from the reality of female bodies and sexuality–beyond the pleasure men derive from sex. Rape is okay–the baby that may result is the woman’s fault. It’s okay to make women pay for the processing of their own rape kits. Reporting a rape is often incredibly humiliating, starting with the questioning, moving on to the exams, and then, for those comparatively few bold women who persevere, facing the demeaning, patronizing faces of all too many legal professionals.

And it’s not just about rape and sex–there’s also the issue of menstruation. When I began the process four decades ago, the Tampax pads lived in a big box hidden back behind the gooseneck pipe under the bathroom sink–even though there were five women and only one boy living in our house for the vast majority of the time. Used pads had to be wrapped up like nasty little gifts and buried at the bottom of the trash can.

Girls were advised to avoid swimming and extremely strenuous activities while menstruating, but even in this there was a double standard. In my world, “strenuous activity” was defined as “strenuous recreational activity.” Farm work–lifting bales, hauling and toting all sorts of things, and walking miles and miles of fields was somehow not “strenuous activity.” It would be easy to excuse the men in charge of this labor because “they didn’t know.” And they didn’t, unless we women and girls were betrayed by our bodies–a flooded pad or tampon, cramps that doubled us over, blazing headaches. When that happened, when we were revealed as biologically female, the response was often impatience, combined with the suspicion that we were somehow using our femaleness to cadge undeserved breaks.

It’s not like that for every woman, but it was for me.

And then we had the whole religious thing. Women were cursed with painful childbirth (and by extension, periods) because Eve messed up. Women were responsible for not “leading men into temptation.” In my world, far too many of the men we encountered were pedophiles, so we started “not leading men into temptation” before we started first grade.We wore concealing clothing, since a hint of even pre-teen knees or breasts might turn men into ravening beasts. We didn’t wear makeup or jewelry because it was vanity to want to look beautiful. Our “beauty” was supposed to be “a meek and quiet spirit.”

For the record, the clothing didn’t work. The men in my world seemed to be “led into temptation” by remarkably little. What I remember most about the aftermath of those events is the corroding guilt, humiliation, and shame. A “nice man” had done something to me that “nice men” just didn’t do unless they were driven to it by the overwhelming reality of a female body.

Female reproductive health was something that we “didn’t need to worry about,” unless we were “doing things we shouldn’t be doing.” Even our uteruses were supposed to be good Christians–meek and quiet. Even now, after years of counseling, an ugly divorce from the “faith of my fathers,” and the birth of a child, the reality of my body both shames and eludes me.

All of this, perhaps, goes some way to explaining why I did a dangerous thing–and I did it because everything in our world–access to healthcare, attitudes toward women’s bodies, the force of conservative religion, even the very design of our effing public buildings, reinforces the desirability of “meek and quiet” as a female ideal. Here’s what I did: I went for seventeen years without having a pap smear or mammogram. And I did this in spite of the fact that I have a terrible family history of cancer.

In my family, lady parts are not “meek and quiet” unless they’re plotting something. Mine started bleeding–not all at once, just more and more, as the months passed. For the last four years or so, I have had about two months total when I wasn’t bleeding. I had no health insurance, and I was living very close to the poverty line, but a combination of just enough money to raise me almost out of poverty, the humiliation of acknowledging that I qualified for public assistance and my ingrained body shame made it easy for me to pretend that it was “just a bad period (for four years?), “peri-menopause,” “hormones,” “being fat.” Below all those “reasons” lay the unexamined, unbearable knowledge that my body was “disgusting”–it bled, it stank when that happened, and it kept me from traveling far from my own bathroom, where I had supplies to deal with the situation.

Because of my past, I lived in my head–I was a balloon, bobbing along at head level. And so I just ignored the messages that my unquiet, unmeek uterus was sending. But then something happened. My son reminded me of three things–that I have a body, that something was seriously wrong with it, and that he, for one, wanted to have me around for a while.

Which is not so say that he, too, had adapted to our circumstances. He has long been immune to shame at having to buy sanitary pads. From the time he has been able to work the credit card, he has fearlessly strode into Safeway, loaded up his cart with groceries and “lady things,” and checked out. I tried to time these things for when none of his peers were around, but the fact remains that he accepted that particularly reality as a fact of our life. I took care of disposal, because let’s face it, used sanitary pads are like snotty kleenex–you really should dispose of your own, but there have been times he’s dumped the bathroom trash with never a word about it being disgusting.

So when I developed a craving for ice and a sore mouth, when I managed to chomp up two big Safeway bags of ice in one week, he pulled up a chair and said, “Mom, something’s not right. You need to google this.”

Googling led to blood tests, which led to a pelvic exam, which led to a D&C, which led to a biopsy, which led to a diagnosis–uterine serous carcinoma.

I seem to be lucky. All those years of bleeding don’t seem to have been cancer-related (after all, all those excuses I gave myself hadn’t just been things I dreamed up–they actually do often contribute to out-of-cycle bleeding). The cancer seems to be a comparative newcomer. And if it weren’t for the ice, and my son, I still wouldn’t know about it.

The past few months have forced me to confront many of my own attitudes toward my body. I’m learning to understand that having a loud, sassy uterus can be a life-saver. I’m learning to accept the reality of my body as not just a good thing, but a necessary thing. I’m learning to treasure each and every minute with my son. I’m learning that I have a lot of really good friends, and some great family members, too.

Mostly, at last I’m learning to understand that I am a woman, with a woman’s body, and that if I love my son I have to not just be okay with that, but learn to love it–as much as I love him. I have to follow my uterus’ example and stop pretending that “meek and quiet” is okay when it means that people–including me–are being put at risk. I have to be honest about my own reality.

So Hillary’s long bathroom break? Not funny. Not something to sigh over. Not something it’s okay to say, “It was just the building” about. Because it’s more than just that building–it’s far too many of our buildings. It’s our schools, our churches, or government offices, our factories. It’s our buildings, and it’s what we’re still teaching our daughters and our sons in those buildings–that it’s okay that women be routinely, unnecessarily shamed, inconvenienced and victimized because of the reality of our bodies, that somehow we’ve decided that women should pay and pay and pay not for what they’ve done, but for who they are. It’s time that we’re honest with ourselves.

And in my case, it’s long past time that I made peace with my lady parts.

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