Day 185: the curtain is up

Yesterday Dana Farber held a Young Adult Cancer Conference that Rie and I attended, to mixed reviews. It is a difficult situation. It’s a conference; we are all there concerning a common cause. It’s a single day of new people meetings and speaker workshops. But the reason of our gathering is not “we all have brown hair” or “we all have dogs” or even “we all want to grow gardens.” Nope, it’s “we all have cancer.” By nature, this is not a light topic. And a conference by nature is a brief experience with morning and afternoon sessions in which you learn something informative. A conference differs from a support group—a support group is something you commit to, and through repeat visits you grow relationships and authenticity is organic. At a conference it’s hard to launch into a safe space in the amount of time available, and deftly handling a delicate topic like cancer just seems like an impossible task. I appreciate the enormous amount of work and organization on their part, and I think for some people it was a chance to feel like someone gets it. Marie found the caregiver workshop to be encouraging. I usually do not struggle with being honest—even in a public setting—but for some reason I could not engage. This is a problem that starts with me: I’m putting on the brakes because this is a club I never wanted to be a part of. I’m struggling with how defining it is of who I am now, the cancer girl. I guarantee it is the first thing people associate with me, and honestly it has been so life altering that it’s how I see myself too. So I don’t blame anyone for this; it’s not 'wrong', it’s just the reality of the moment. This is when I remind myself that it is not all bad, that I will continue to change and grow for the rest of my life, that this is just a swatch (albeit a large one) in the grand picture of my life and who I am.

There was one unexpected moment—one phrase—that struck me yesterday. In the opening session, someone read a short piece of writing about a part of her experience with cancer; among other things she said the following: “Cancer did not just disrupt my life, it disrupted my imagination.” And though the speaker did not take this thought to the conclusion that I was expecting, this phrase still resonates with me so much. I feel an absurd interruption of who I am as a person—my personality appears to me stunted and dried up, my capacity for entertaining joy in my life feels wounded. I feel lost, as in, gone away to sea. My dearest hope is that she’s in there, somewhere still. 

For the final session of the day, I had signed up for the creative arts expression workshop, and amongst the cray-pas and magazine clippings I found myself drawing what looked to be a colorful curtain, reminiscent of a circus tent, halfway pulled up the page. And it just sort of occurred to me: this is life. The curtain is up. As in, life is exposed, in progress, all hidden compartments and inner workings are being revealed with big bright lights, and the show must go on. And I’m in the middle of some creepy dance number that I haven’t practiced, and maybe I am also naked.  Real life is being revealed to me: sort of ugly and hard—whereas without cancer this may have taken longer to uncover, or perhaps never at all in this way. I don’t think this means I am happy that cancer happened, it’s not a joyous thing to be caught naked in front of an audience and a mirror. But I am trying to see it for what it gives me, gift or not. It’s hard to know if I’m pleased with the big reveal, right now it’s too close and I’m still trying to move my way through the finale of this segment. I had hoped that this time bubble would prove to be instructive and constructive for my person, and maybe it is and I maybe I just can’t see it. Right now it feels like I’m just barely scraping by with a dance that looks like sitting on the couch and making eggs.

I did learn some things about myself yesterday: one being that conferences aren't really my thing. I'm glad I tried it, something new: my first real excursion into the wild since being confined to the spaceship coupe. Perhaps in a few years, when this is more past than present, I will feel differently. Until then, bopping along my merry way...

Day 181: this is water

Something deeply embarrassing occurred yesterday, and for some reason I can’t stop thinking about it, so here we go. I don’t get embarrassed easily, so I find this experience to be unique and therefore worthy of conscious mulling over. I am afraid to write about it. But I am striving to be honest with myself, and I see this as a teachable moment. 

So self, listen up.

Well, I could not BELIEVE the people in front of me. So unaware of what’s going on around them; the other people who are waiting in line and possibly now late to an appointment, perhaps? Here I was, finally I had arrived fifteen minutes early; FINALLY early after weeks of being late for my massage appointments, and all the embarrassment that goes along with being that person who is always late and pushes everything late and late late late late. I was so happy to be early, to check in downstairs, pay the money, grab the receipt, get upstairs, check in again, get vitals done and then finally get to the massage. There are two women in front of me at the register where I have to check in. They’re talking to each other about the money, talking to the woman at the register, how much is it—oh really? Wow okay. How should we pay for it, oh it’s $246.50 with the discount? What about insurance, I think insurance is supposed to pay for it—well we need to submit it to the insurance for reimbursement, well is it better to pay with check or a card to submit it to the insurance company? I’m not sure if the insurance company will pay for it, what is the insurance? Well let’s submit it anyway, does the receipt say what it is on there? Can we have two copies of the receipt?—And would you like the dark blue bag or one of the other colors?—Oh, what are the other colors, yes can we see them all? And the tissue paper colors. Do you like the dark green with the blue? Maybe the white. Also do you want the light colored cap or the darker one? Do you have a box?

Starting to breathe heavily beneath my mask, I was able to hide most of my displeasure and annoyance. I just wanted to be on time for once in my life is it too much to ask? I felt the anger rising, so quickly it actually surprised me. I did the work, I got here early, shouldn't I be able to reap the benefit of doing it right for once? It took almost a full ten minutes for me to realize that these two ladies were in fact buying a WIG FOR A PERSON WITH CANCER, and what the hell is wrong with me? Why was I getting so upset?

Only five days prior I had just re-watched David Foster Wallace’s commencement speech that he gave in 2005 at Kenyon College called ‘This is Water’*. In the beginning of the speech, Wallace uses an illustration: there are these two young fish swimming along and they happen to pass an older fish going the other way. The older fish calls out to them, “Morning boys. How’s the water?” A little while later, one of the younger fish turns to the other and goes, “What the hell is water?” He goes on to say that, like these young fish who have no concept of what their world is made of, our human default setting is to put ourselves in the center of the universe: our hunger, our frustration, our needs are of the utmost importance; and look at how fat, stupid, lazy and inconsiderate everyone else in THE CHECKOUT LINE is (I know, it’s so specific; this is the height of my embarrassment), and can’t they see what they’re doing to me? Wallace challenges this unconscious ‘default setting’ of placing ourselves at the heart of our worship with the freedom that an education gives you to choose how to see the world. And this is hard, because what adult life is really made up of most of the time are long days, monotonous tasks, difficult and harrowing experiences, small pleasures, and little comfort. Dealing with this reality is the genuine challenge of life. To have an education is to have the chance—the freedom—to choose how to experience the world: is this a world in which I am the perpetual underdog, a world where the baddies are out to get me and ruin my chance at happiness? Or is it a world that is filled with people trying their best in demanding and intricate situations? Wallace offers an example in his speech: it is not impossible that the woman in front of you in the checkout line who just screamed at her whiny kid is over-worked, exhausted from staying up late hours with her husband who is dying of cancer, and who is now trying to pay for groceries with the food stamps that are stuck in the recesses of her wallet. It is not impossible. In fact, it is nearly the EXACT situation in which I found myself yesterday. Even as I was standing there, thinking, “this is water. This is water.” I was boiling. I knew FOR A FACT that the women in front of me are so intimately close with someone who is going through cancer that they are paying for her wig. And yet. I boil.

And it was this bizarre meta-experience (oh existential crises) in which I found myself divided. On one side, I am trying to be honest about situations and experiences, and truthfully living out my feelings. And I was feeling frustrated and angry that these women were literally talking about tissue paper shades for fifteen minutes while I missed my appointment. And yet, I heard the little voice inside me ‘this is water. This is water, Bekah.’ And I had to let that be the prevailing voice in my body. I had to let the anger go. Manually, if that’s what it came to (and it did): Unclench your teeth, soften your eyes, breathe out. The honest truth is I have no idea if the woman in front of me was barely hanging on to herself, maybe she was just managing to hold back tears, like I was, trying to pick out the damn tissue paper. She probably knew how stupid it all sounded but somehow it was still a monumental decision. And I have to accept that. We are all going through the trenches; albeit at different speeds and abilities and at diverse points over our lives: but it is the universal experience. I want to choose to see that we are all a part of the same scheme, all our own little cog in the capital G Grind that holds us all in a balance.

And perhaps it will start to transform: from little cogs to a big picture system that will somehow never cease to humble and amaze. I want to soften my focus to allow the peripheral to be just as influential. To do that work. To allow people to affect and change my life, to allow splendor to exist in the mundane, to let everything happen to me: beauty and terror.

“The really important kind of freedom involves attention, and awareness, and discipline, and effort, and being able truly to care about other people and sacrifice for them, over and over, in myriad petty little unsexy ways, every day.”

—David Foster Wallace, This is Water

* This speech was published as a book in 2009 under the same title, and here’s a link to a little video that uses an excerpt from the speech (and is so worth watching) http://dotsub.com/view/6b8cc93f-3b53-486b-a1ce-025ffe6c9c52