on losing everything

the initial inspiration for this post was the chemical burn scene from fight club.  (the movie, of course, inspired the title for my blog.)  if you haven’t seen the scene and are too lazy to watch the two-minute clip i’ve provided (click on the “chemical burn” link below), i’ll give you the cliff’s notes version.  tyler durden (brad pitt) gives the narrator (edward norton) a chemical burn with lye.  by forcing the narrator to experience the most intense pain of his life, tyler is hoping to impart a profound lesson:  it’s only after we’ve lost everything that we’re free to do anything.

Chemical Burn by movieclips

throughout the scene, which is comprised mainly of the narrator screaming, writhing in pain and attempting to (physically and mentally) escape said pain, tyler spouts forth such truisms as:

this is your pain.  this is your burning hand.  right here.

this is the greatest moment of your life and you’re off somewhere missing it.

first you have to give up.  first you have to know, not fear, know that one day you are going to die.

i’ve been ruminating on these themes for a while now, both leading up to and following a screening of the movie a couple weeks ago.  last week, the power of this parable was reinforced for me when i attended a workshop at the cancer support community called “finding your emotional balance: moving forward after a cancer diagnosis.”  the trainer was michelle marquit, a licensed marriage and family therapist, who has experienced multiple serious illnesses during her lifetime, including breast cancer.

during a discussion portion of the workshop, one woman expressed her difficulty accepting the reality of cancer.  for her, this difficulty and fear manifested itself in several different ways:  by concealing her illness from her children and her friends; by experiencing withdrawal and depression; and by asking the question everyone diagnosed with cancer has surely asked at one point or another:  why me?

in fact, this woman had the very same questions i did when i was first diagnosed.  others in the room shared that they had entertained (and sometimes continue to entertain long after diagnosis) questions in the following vein:  why did this happen to me even though i…

…eat healthfully?
…exercise?
…don’t abuse drugs and alcohol?
…participate in preventive medicine?
…generally make good and healthy life choices?

the list could go on and on.

another woman pointed out that she and her sister, despite having lived very different lifestyles, both received breast cancer diagnoses.  for her, this drove home the point that cancer is an equal-opportunity disease.  people don’t get cancer because we did something to deserve it, nor does doing things “right” ensure one won’t get cancer.

in fact, the only thing we do know for sure is that we will all die.  i will die.  you will die.  and the likeliest path you and i will take to death is illness.

a third woman in the group voiced an idea i’ve encountered in multiple places recently, including a recent article called, “why we avoid talking about illness,” by tamara mcclintock greenberg, psy.d.  the idea is this:  when people who are sick and faced with the prospect of dying talk about their illness and eventual death, they remind their listeners that they, too, will eventually become sick and die.  and that, my friends, is a downright scary thought.

as dr. greenberg notes:

Death is not something most of us like to think about. Earnest Becker’s 1973 Pulitzer Prize–winning book, The Denial of Death, points out that one way we deny death is to focus on the desire to be a hero. Being a hero, in this context, refers not only to our own basic need to feel powerful and the biological desire to preserve ourselves, but also to the power to cheat death.

but in the words of tyler durden:  you have to know, not fear, know that one day you are going to die.

last week’s workshop ended with essentially the same message.  michelle marquit’s “acceptance model,” which she shared with the group, calls for the acknowledgement and acceptance of thoughts, feelings, and emotions.  by accepting their presence, she explained, we can then make a conscious choice about what to focus on next.  perhaps, she suggested, it’s about allowing the fear of death to coexist with the joy derived from a pretty flower or clouds passing overhead.

the upshot, as tyler so wisely notes, is this:  it’s only after we’ve lost everything that we’re free to do anything.

**stay tuned for a sequel to this post about the vast world of possibilities that opens up after every thing is lost.

friends are like walls

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i’m pleased to report the successful completion of 10 rounds of chemotherapy.  this was the first round in a very long time i tackled without the assistance of the parentals.  i’ll admit that i was a little nervous going into it.  those long hours of feeling too drugged up to drive anywhere or do anything meaningful/productive can wear on you if you’re alone.  but i felt confident that i had enough friends scheduled to help out, bring me food and keep me company.  there were moments of missing my mom.  there were moments (as there always are during chemo, no matter who’s around) of feeling lonely and scared and sad.  and, of course, i felt the physical effects of the drug cocktail:  jittery, nauseous, exhausted, nauseous, wired, nauseous.  but overall, i felt calm and cared for and comfortable.

and i felt — and continue to feel — unbelievably fortunate and grateful to have the best friends a girl could ever hope for.  what the sign below says is true.  whether i’m physically by myself or in the company of another person, my friends have given me the amazing gift of knowing that you’re there. 

thank you for the texts, the emails, the facebook messages, the hugs, the late-night phone conversations.  thank you for letting me lean on you so very often.  but more than anything, thank you for just being there.  i love you all!

walking the walk

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there are three reasons i’m eating this pinkberry while waiting for my lunch to arrive: a) trying to make myself feel better after finding out the cyst on my left ovary is twice as big as it was two months ago and might need to be surgically removed (like I really need one more thing to think about apart from all this cancer stuff); b) following my own advice about eating dessert first. life is uncertain, right?; and c) i LOVE pinkberry!

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i’m a loser, baby, so why don’t you kill me?

i think by now we’re all used to conceptualizing of cancer as a fight or a battle. when i googled “elizabeth edwards loses battle,” for example, i got 71,000 results, many of them news articles with headlines like this one from CNN.

i don’t know if it’s just me, but i when i think of the “winners” of battles, i think of those warriors who were better prepared, had more sophisticated strategies, superior weaponry, higher-tech equipment, the right leadership. the list of what makes a “winner” goes on and on. in real life, battles aren’t like soccer games for 6-year-old kids. not everyone can win and take home a tacky trophy. someone has to lose. the losers are the opposite of the winners. they didn’t have whatever key ingredient/s or combination thereof it took to win. they are weaker of mind, body and/or spirit, and, ultimately, they are vanquished.

when this imagery and set of assumptions is applied to cancer, the disease represents one side in the fight and the patient the other. when i hear the words “cancer battle,” for some reason i always picture this scene from the movie 300.

and i wonder, according this rubric, which side am i supposed to represent? the underdog spartans with their magnificent spray tans and badass CG abs? or the representatives of the all-powerful persian empire, with their elephants and mercenaries and…well, lots of things on the list of what supposedly makes a winner. in this case, the all-powerful persians were, ultimately, vanquished because they didn’t have true grit like the spartans did. hmm. don’t know how i traveled from 480 BC to the wild west, but i think you can probably tell where i’m going with this.

as debbie, who has ovarian cancer, so rightly points out in this great salon article, “what does winning look like? you live forever?”

writer mary elizabeth williams goes on to say:

…the tired metaphor of battle reduces the experience of cancer to one of agonizing struggle. It makes enemies of our bodies, and suggests that when, as Elizabeth Edwards has, one chooses to end treatment, one has waved a white flag of surrender.

when i read a headline like “elizabeth edwards loses battle to cancer,” i, too, am filled with a sense of defeat.  and questions that are often tantamount to blaming the patient, the one who did not emerge victorious, the vanquished.  questions like: “did she fight hard enough?”  “did she seek enough opinions?”  “did she try alternative treatments?”  “did she have a positive enough attitude?”

the answers to those questions are irrelevant.  elizabeth edwards’ death, like the deaths of all those who die from cancer, didn’t have to do with how hard she fought.  (we all know she “fought” hard.)  it didn’t have to do with the fact that she somehow had a weaker spirit, or less determination than the disease.  she died.  because she had cancer.  if she hadn’t had cancer, she would have died, eventually, of something else.

and when i think about elizabeth edwards, i don’t think she died a loser in cancerland.  i think she died a winner in lifeland.  how about a headline like this: “elizabeth edwards, victorious in life, died today of cancer”?

while i don’t think it’s particularly likely that i alone can change the nomenclature of cancer, i think it’s worth giving some consideration to how we could update the ways in which we talk about cancer in order to confer less blame on the patient.  as someone with a chronic form of cancer, i’ll never be a “survivor.”  i won’t ever have “beat” it entirely.  but i also don’t like the idea of going through the rest of my life as a “fighter” in a battle i know i’m going to lose sooner or later.  it just seems a little defeating.

i’m going to be doing some thinking about possible alternatives to the current cancer vocabularly.  and i’m interested in hearing your thoughts, too!  are there other words you think would be more appropriate than “battle,” “fighter,” “survivor” and, ultimately, though implied only, “loser”?

i will leave you with this song, by beck, which doesn’t have anything at all to do with this post, other than the fact that it inspired the title!

dear cancer: you might have killed me, but i kicked your ass

shortly after i was diagnosed with cancer, i heard a woman on the radio talking about the memories with which she hoped to leave her children when she died. (she had advanced-stage cancer. her children were young.) the simplicity of her answer was striking. she wanted them to remember her as being happy, loving and brave in the face of a challenging, painful and, ultimately, fatal disease.

ever since listening to that show, i’ve thought a lot about the legacy i want to leave behind when i die — be it 5 years from now, 15 or 50 (although, if i beat the odds and make it 50 years, who cares about a legacy at that point?! i joke. i kid.).

this TED talk was sent to me by a friend (and newly dubbed producer of my blog, for all the wonderful creative ideas he’s sent my way recently!) who insisted that i a) watch it immediately; and b) blog about it. the talk — which is well worth a watch (it’s only five minutes; c’mon you surely have that much time!) — expanded the idea of that-which-will-be-left-behind far beyond my previous notions of legacy.

in the digital era, leaving one’s mark on the world is no longer just about face-to-face interactions and phone conversations (which will quickly fade from memory), or a little bundle of hand-written letters, neatly tied together with a ribbon.  today, human beings have the opportunity to connect with each other through seemingly infinite forms of media.  if, indeed, future technology enables us to beam holograms of dead-and-gone loved ones into our living rooms and interact with this identity — created through years of facebook and twitter and blog posts (as the talk suggests) — we’d better be damn careful about the social-media based legacy we’re in the process of creating each and every day.  (that’s right, i’m talking to you, rep. weiner.)

fortunately, lots of people — both within the cancer community and outside of it — are already lots of steps ahead of me.  this article covers just a few of the ways in which cancer survivors have created forums for human connection that have the potential to long outlive them.  one great example is the just-launched social networking site for cancer fighters, survivors and supporters — i had cancer.

jon mitchell (author of the above article) describes the site like this:

Mailet Lopez, the creator of I Had Cancer, survived Type 2B breast cancer. After recovering, she “wanted to help the next person who was affected,” so she started a blog to chronicle and share her experience. The team at Squeaky Wheel Media picked up her story and approached her, and they built the idea into a social network. The site connects survivors, fighters, and supporters using geography, chronology, and type of cancer. It features a question-based discussion board, as well as a bulletin board called “Dear Cancer”…

it might sound strange, but i’m thrilled to have been inducted into the society of those who have been diagnosed with cancer — a society of people who have the opportunity to transform a terrifying and disempowering experience into a way of creating, as drew olanoff from the mitchell article describes it, “social good.”

whether or not you’re a cancer survivor, whether or not you have any interest in creating your own new social network, perhaps it’s worth taking a moment to ask yourself, “what is the legacy i want to leave behind?  and if my hologram were to be beamed back, would i be comfortable with its representation of me?”

i will leave you with this: if you had just one final tweet to leave the world (a mini-legacy of 140 characters or less), what would it be?

mine (as the title of this post indicates) would be “dear cancer: you might have killed me, but i kicked your ass.”

a “fortune”ate piece of advice

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i’ve been a little disgruntled over the past few years as chinese takeout fortunes have morphed from silly-and-fun predictions like “you will enjoy 50 years’ good luck” to vague and confusing sayings like a recent one i got: “you will be in the best position.”  wtf does that even mean?

yesterday’s lunch yielded a good one though.  (see above.)  i think it’s actually more of a “fortune” than most other ones i’ve seen to date because, if i’m able follow its sage counsel, it could actually turn into a self-fulfilling prophecy!  the more myself i’ve allowed myself to be lately, the more wonderful i’ve felt.  now, all i need is a little more practice to drive the message home.

this fortune was also a good reminder that the right messages and reminders will cross your path if your eyes are open and you’re open to receiving them.  now, go forth, and be yourself!

radiant, even in darkness

this poem was sent to me by a dear friend and mentor who has been a guiding light and inspiration for me in recent weeks.  its evocative imagery and hopeful message touched me so deeply.

MOTHER WISDOM SPEAKS
(by Christine Lore Webber)

Some of you I will hollow out.
I will make you a cave.
I will carve you so deep the stars will shine in your darkness.
You will be a bowl.
You will be the cup in the rock collecting rain.

I will hollow you with knives.
I will not do this to make you clean.
I will not do this to make you pure.
You are clean already.
You are pure already.

I will do this because the world needs the hollowness of you
I will do this for that space that you will be.
I wlll do this because you must be large.
A passage.
People will find their way through you.
A bowl.
People will eat from you
And their hunger will not weaken them unto death.
A cup to catch the sacred rain.

My daughter, do not cry.  Do not be afraid.
Nothing you need will be lost.
I am shaping you.
I am making you ready.

Light will blow in your hollowing.
You will be filled with light.
Your bones will shine.
The round, open center of you will be radiant.
I will call you Brilliant One.
I will call you Daughter Who is Wise.
I will call you Transformed.

my aspiration is to accept with grace the hollowing of myself that has been brought about by cancer.  and to have the strength and courage to allow myself to be filled back up in ways i didn’t even know were possible.  and to emerge transformed: a passage via which others can find a light in their darkness.

thank you to all those who have made me believe this is possible.  i owe you a debt of gratitude i can never repay.