Barbara Ehrenreich and Positive Thinking

Wednesday, April 14, 2010

I wanted to share this interview with Jon Stewart and Barbara Ehrenreich, whose new book “Bright-Sided” discusses the dark side of positive thinking: http://www.thedailyshow.com/watch/wed-october-14-2009/barbara-ehrenreich

Many times, when you are coping with an unexpected disappointment or particularly challenging time in your life (like cancer), people (even people you love) try to help you feel better by suggesting you just “think positive” and “don’t dwell on the negative.” I talk about this in Chapter Five of my book, Recipe For Lemonade.

I can’t tell you how annoying this is for someone going through cancer.

Now, there is a difference between a heartfelt, “It won’t always be like this; hang in there,” (which I love) and a somewhat self-righteous, The Secret/Law Of Attraction-motivated attitude that implies a person can bring misfortune on themselves deliberately through a combination of their thoughts and the science (or magic) of quantum physics.

I myself have been buoyed by hugs, e-mails with supportive, encouraging messages, and belly laughs brought on by joking coworkers. Whether these things have changed my white blood cell counts remains to be seen, but I do know that they have given me a reason to get up in the morning – something to keep living for – which is very motivating when you’re fighting for your life. To put it frankly, these things can be the difference between wanting to live and wanting to die. What they cannot do, however, is cure cancer.

We don’t want to believe this, of course. We want saving someone’s life to be as simple as the power of prayer. We don’t want to believe that sometimes, people die and there is nothing you can do to stop it. That’s a terrible world to live in, isn’t it? A world where someone you love, no matter how much you love them, or how much they love you, can be beaten by a lack of T-cells. And yet, this is the world we live in, and no amount of happy thoughts can change it. Why is it we can believe positive thinking can cure cancer, but it can’t cure AIDS? Why do scores of people bash chemotherapy when it has saved millions of lives? I know it’s not perfect, but it’s ALL WE’VE GOT. If you have a better solution, for God’s sake, get some medical training and go prove it at the Mayo Clinic, because we could certainly use an alternative. But don’t sit there when you haven’t had a doctor tell you that you could die if you don’t do what they say, and then suggest I meditate on rainbows to shrink my tumor.

When people I love tell me not to be so negative (i.e., realistic) about cancer and the ramifications of having had it, I wish that, for just a moment, they could be in my shoes. That, for just a moment, they could feel the fainting heart and nauseous stomach that comes with a cancer diagnosis. The sinking feeling that accompanies the realization that the life you thought lay before you – the one you were working towards, hanging in there for, and getting up in the morning for – has been utterly wiped out, like Nagasaki, in a split second. I wish they could know what it feels like to go through week after week of treatment – each chemo drip reaffirming the unavailability and inaccessibility of that future – and know how hard it is to keep getting up in the morning, despite your uncertainty about the future. But mostly, I wish they could feel the way I feel when someone suggests in the face of all this that staying positive can not only cure cancer, but keep it away. Are you fucking kidding me? I want to say. You do four rounds of AC and twelve rounds of Taxol and tell me how to stay positive when I look like Uncle Fester and my future looks like Hiroshima (circa 1946). It is taking everything I have in me just to keep waking up in the morning, I want to say.

Now, all that being said, there is a way to come out of cancer without hating your life and the people who have loved you through it.

The first thing you must do is recognize that there is a pro and a con to nearly everything. Sometimes, the only pro is, “this will not last forever,” and that is what you must hang onto if you want to make it to the other side of disaster. Sometimes, the cons build up so much that all you can do is curl up in a ball and cry. When this happens, cry. Cry, cry, cry. Cry till your eyes are swollen shut. Stay away from drugs, alcohol, and anything else that’s self-destructive, and curl up in bed until you fall asleep. When you wake up, that crappy day will be over and done and a new one will have started. When you get out of bed, on this new day, don’t think of it as one more crappy day to get through – think of it as one day closer to the end of a crappy week, a crappy month, a crappy year. It won’t stay crappy forever – sooner or later, things WILL get better. Your job is to make it to the end of the crap. Trust me, it will come.

Whenever the crap breaks, take a breath. Entertain the possibility that, even if this amazing life you were working so hard for and imagining every day is not to be, that there might be some alternate, happier (or just-as-happy) future available to you now. This is all you have to do – drive the wedge into your crap-centric thinking – to jump the track. Find the things in your life you can be content with, even happy about, and you will feel the crushing despair of impossibility lift, if only slightly.

This is the path to rebuilding optimism – not faking it till you make it, not pasting on a smile when you feel like giving up, but seeking out the reasons to keep living, keep hoping, keep dreaming. Giving yourself permission to imagine new happinesses and forgiving yourself for having a bad day, or a bad month, or a bad year. We only blame ourselves for misery because we don’t want to live in a world where anyone and anything can fall apart, at any time, for no good reason. We have to believe that people bring it on themselves, otherwise we’re all vulnerable. When someone tells you to “stay positive” instead of worrying about a recurrence, they’re either afraid of their own mortality, or grasping at straws because they don’t want to imagine a world without you. Chances are, they have no idea what you’re going through, so unless they’re being a pushy jerk, cut them some slack.

Especially if they bought you a pink bear.

Stuck In A Moment That You Can’t Get Out Of

Friday, December 4, 2009

Ever feel like you’re stuck in a moment you can’t get out of? Like, you keep going back to it and telling yourself, “Had I only done THIS,” or, “If only I HADN’T done THAT”? Do you harbor anger and resentment over that moment, or do you often find yourself blaming all the unhappy or unsatisfying things in your life on that ONE decision?

Throughout this last year, I have been taking notes.

Why? Two words: Joseph Campbell.

Campbell was a proponent of the Monomyth, also known as “The Hero’s Journey,” a literary structure he’s said shows up in nearly every story, whether it’s Gilgamesh or GlengarryGlenross. In an effort to navigate the stormy waters of trial and recovery, I’ve found myself turning to Campbell for guidance, seeking some kind of roadmap for my journey. Of particular importance to me is what Campbell calls the “boon” – the elixir of life, the Golden Fleece, the healing balm the Hero faces trial after trial to obtain and return to his (or her) home. I’ve wondered, time and again, “What is my boon?” I’m happy to say, I think I know now.

Many people have gone through what I’ve gone through. They might not have had cancer, or lost their business, or had to rebuild after a tragedy. Maybe they busted their knee in a homecoming game, dashing their hopes for a collegiate scholarship. Maybe they miscarried after a car accident, or married someone who didn’t turn out to be what they thought. It doesn’t matter; many of us have had to watch our dreams vanish, and imagined that with them, we’ve lost our ONE chance at happiness. Afterwards, we end up living a half-life, hating our reality while convincing ourselves that the life we ARE living “would be happier if only…” We hate ourselves for making the wrong decision, taking the wrong path, loving the wrong person. We beat ourselves up, for what? For not being psychic? It’s ridiculous, but people do it every day. I did it for months, imagining that, if I had my lump removed earlier, if I hadn’t bought a house in Hawaii, if I hadn’t started a business three months before the economy crashed… if, if, if. If wishes were horses, beggars would ride!

My boon is this: a way back to happiness after you think you’ve lost everything. A road map, to navigate the waters post-shipwreck. I put the beginnings of it here now, for all of you who have helped me make it to the Other Side of this.

1. Make a decision, today, to entertain the idea that happiness – YOUR happiness – can come in an alternate form than the kind you always imagined for yourself. Is it possible for you to find happiness without the things you’ve lost? Is it possible that there could be some other happiness in your future, that you can’t even imagine yet?

2. Forgive yourself for not being psychic. We can never know our futures, no matter how carefully we plan them. Trust me! And no amount of beating yourself up will change the time space continuum enough for you to go back and know then what you know now.

3. Because you’re probably already in the habit of comparing your life to everyone else’s, and, let’s face it, you probably don’t know what’s *really* going on in their lives (just as you can’t possibly know how fantastic or crappy this “alternate” life you’d be living, had your life gone a different way, would be), make a decision right now: if you’re going to compare yourself to other people, look to people LESS fortunate than you, as opposed to people MORE fortunate than you. It seems logical, but we get caught up in what we DON’T have (which 99% of advertising has conditioned us to think about, in order to drive consumerism), and we neglect to appreciate what we DO have. Comparing yourself to people who have more challenges than you have will cultivate within you the perspective of someone who is more fortunate than most. Cultivate this habit, and you will feel blessed instead of cursed.

4. Now that you are 1) open to the idea that your happiness can come in a way *different* from the ONE way you thought it could ONLY come in; 2) you’ve forgiven yourself for not being able to predict the future; and 3) you’re feeling a little more grateful for the life you DO have, make a decision to STOP telling yourself that your life cannot ever hold the happiness that some alternate, imagined reality (where you made different decisions) could. You simply don’t know that, and beating yourself up about what you think you’ve lost will only keep you from being open to happiness in THIS reality.

5. When you start worrying that you HAVE missed out on your one chance at happiness, and that you future couldn’t possibly hold anything as good as what you *could* have had, remind yourself, YOU’RE NOT THERE YET. And, you’re not psychic. So don’t get yourself worked up over a part of your life that hasn’t even happened yet, or a part of your life that might never have happened anyway.

6. Lastly, recognize that, no matter what mistakes you’ve made, we all do the best we can, with what we have at the time. Give yourself some credit. The only mistake you’ve made is believing that it’s no longer possible for you to find happiness. Happiness comes in all shapes, sizes, forms, and times, and we can never know when or how it will present itself. Only shutting ourselves off from joy, as some form of self-punishment for mistakes we think we’ve made, keeps us from finding it again.

And that’s what I’ve come to so far. :)

 

Skeletons and Scars

Saturday, October 24, 2009

I’m watching Jason and the Argonauts. Have you ever seen it? The scene I’m watching now is the skeletons fighting Jason, at the end, after he’s captured the Golden Fleece. He’s CAPTURED the Golden Fleece! He should be home free, right? Wrong. This is the part Joseph Campbell calls “The Flight.” Watching the skeletons rise out of the ground from the Hydra’s teeth, accompanied by creepy dark music, my stomach churns. Even though I know they’re fake, even though I know it’s just cheesy 1960s stop-motion animation, these skeletons are freaking scary. They seem cold, calculating, then vengeful and snarling. Their expressions, like Hugo Weaving’s Guy Fawkes mask in V for Vendetta, never change, yet I find myself imbuing them with sneaky, vicious malice.

I wonder what I am doing, imagining a career as a breast cancer survivor. Reviving the skeleton again and again. Inviting it back in. Why would I do this – turn myself into Ron Kovic? Am I trying to overcome breast cancer, to make my peace with it, to profit from it somehow, to make it all worth it? I tell myself, if I hadn’t gotten breast cancer.… and go blank. There is no benefit right now. I am not (yet, I hope) at that place where I am thankful for it. It’s out there, I know – that other side – but how and when will I get there? Paddle, paddle, paddle. I’m still swimming.

The only place I feel comfortable talking about my disease is among other survivors… they’re the only ones who get it, who I can talk to without feeling like a freakshow. My port’s bothering me. Oh, your port? Mine too. Say that to someone who has never had chemo and they look at you like an alien. Your port? What the fuck, your port?! Yeah, the plastic port, surgically implanted in my chest. The one I can’t afford to remove because I have a $26,000 insurance deductible. The port that I can feel under my the skin just above my heart, the one that makes me dread letting a man touch my chest, for fear it will totally gross him out.

Last night, I sat in a room of models getting ready for a fashion show – at a BREAST CANCER FUNDRAISER – and felt utterly self-conscious of my scarred-up abdomen, my imperfect breasts, my chemo hair, my aching feet. I watched the friend who came with me make a wig out of a pink boa, a kerchief, and a stapler, while a young, thin blonde was having her hair curled and sprayed to Fem-Bot perfection. The models were lovely and sweet, but it was surreal; I felt like a Saint Bernard at a Pomeranian convention.

Why would I subject myself to this feeling, of being utterly disconnected from everyone around me, over and over, for a living? Why would I want to face down this skeleton in my closet time and again, to make friends with it, to bring it onstage with me and wave to it in the crowd? A survivor told me yesterday that because she tested positive for the BRCA-1 gene, her healthy sister got tested for it and, when she was positive too, immediately had a prophylactic double mastectomy. I started to cry, not wanting to imagine the possibility of my sister having to go through what I’ve been through. Seeing the skeletons on the screen rise up from their hydra teeth, I immediately remembered the conversation. Death coming back for me, coming for the people I love. Should I get tested? Why? So I can make this fight that much harder?

I was in the car with my father once, on the way to church, listening to the Forrest Gump soundtrack, and California Dreamin’ came on. He suddenly burst into tears, scaring the shit out of me. Drying his eyes, he said, “I’m sorry. When I was in Vietnam, there was a kid with us who used to sing this song over and over. All he wanted was to go back home. He never made it; he died before we came back.” This pain, of surviving something horrible and terrible, and being grateful to be alive and sad that not everyone got to live, had been in my father’s heart for almost thirty years. He never talked about it, not even after that morning. I wonder if I could have related to him now, even though my fight is different. We forget this is a disease that kills people, and when we remember, it reminds us how close we came. Why do we cry? For not being the ones that don’t make it? Or for having had to fight at all?

How does Jason escape the skeletons? Remarkably easily, strangely enough. They back him to the edge of a cliff and he jumps off, drowning them (how can they drown? why wouldn’t they walk on the sea floor like those Pirates of the Caribbean skeletons?). He swims to his ship, embraces the girl, and lives happily ever after. Really? Really? It’s that easy? A leap of faith. If only.

Ron Kovic said once, “The scar will always be there, a living reminder of that war, but it has also become something beautiful now, something of faith and hope and love. I have been given the opportunity to move through that dark night of the soul to a new shore, to gain an understanding, a knowledge, and entirely different vision. I now believe I have suffered for a reason and in many ways I have found that reason in my commitment to peace and nonviolence. My life has been a blessing in disguise, even with the pain and great difficulty that my physical disability continues to bring. It is a blessing to speak on behalf of peace, to be able to reach such a great number of people.”

I can only hope one day I will feel the same way about my port scar.

 

Rebuilding, One Brick at a Time

Monday, October 12, 2009

Avik: Why do you want to bomb Dresden? 

Walter Russell: There’s a monster in a room. Once that room was filled with everything that was valuable to him. His train sets, his puppet theatre, his model planes. They’re all broken now. All that’s left untouched is his beautiful collection of Dresden china. You go into that room, you smash all his crockery, then you have broken his spirit.

I realized today that that’s what cancer did. It came into my life and, like an American B12, bombed my Dresden to hell. I was left shell-shocked, looking at the wreckage of what was left of the future I had planned, unsure of how to rebuild it all. When something is vaporized before your eyes, how can you even imagine a day when it is whole again?

What breast cancer does to women is attack them at the center of their femininity – the symbol of female nourishment, sexuality, and beauty. If they are unlucky enough to catch it late, or face aggressive chemotherapy (as I did), even more is taken away – their hair, the blush of their cheeks, their energy. When the dust settles, your ability to survive the aftermath of a cancer diagnosis depends 100% on your belief that life can be good again, that you can feel good again.

Day after day when you are fighting this disease, you feel like crap. You feel like crap for months. The treatment that is supposed to me saving your life is actually killing you – not enough to produce a system collapse, just enough to get you to the brink, because healthy cells can repair the damage, but cancer cells give up. That is how chemotherapy works – it relies on your body’s ability to rebuild itself. You must attack it sequentially, repeatedly, until every last cancer cell is destroyed, even if your healthy cells are brutalized. It’s like a Dresden bombing every week.

I have asked, nearly every day, Lord, what am I supposed to be learning from this? In moments of pain and struggle, I have wondered how losing my hair or being hospitalized or going broke could possibly be helpful to me, let alone someone else. The answer came to me over a few days of Boot Camp, crystallizing this morning when my coach and trainer pointed to the back of my T-shirt with an enthusiastic grin and said, “See? That’s what I’m talking about! SPINE sweat!”

Lou always calls the last set in a workout circuit the “Transformation Set”. It is the set where you feel like you are going to throw up, where you try to summon your strength and your muscles refuse to contract. You’re doing mountain climbers or burpees and your quads are numb, as if to say, “Yeah, sorry, kid, that is just not gonna happen.” Just five or six seconds later, though, they tighten, and you can squeeze one more rep out. That is the part where your body transforms itself, becoming stronger and more resilient, cell by cell. Ironically, am doing to my body what chemotherapy did to it: breaking it down so it can build itself back up.

Looking back in an attempt to construct a Hero’s Journey from my history, I see that Lou has been my unwitting Obi Wan. By challenging me 30, 40, or 50 seconds at a time, he has trained me in chunking it down. Taking a task one piece at time, bearing a weight one pound at a time, crawling through a tough period of my life one day at a time. It is a lesson I could never have learned without going through it, just as the lesson of “this too shall pass” could not have taken root in my heart, had I not used it every day to envision a brighter future. Lou has been my Mr. Miyagi, and I’m not even sure he realizes it.

If you can truly manage to live in the present moment, you will inevitably always either be cherishing or white-knuckling your way through life. We imagine perfect futures where there is no pain, there are no problems, and everything works out. Dreams like that make me think of a parable Bernie tells in his second book – a Congressman meets a friend for lunch and bemoans the state of the world. His friend says, “I know a place in Virginia where there are 300,000 people with no problems.” The Congressmen says, “Where is that?!” He answers, “Arlington Cemetery.”

Life is hard, but not always. The sweet tempers the bitter, the bitter tempers the sweet. I know it is easy to have a philosophical perspective when you have made it to the Other Side of tragedy. Trust me: this peace was hard-won and not easy to cultivate; it took a thousand strokes to paddle to a place where I can look back and see meaning (and even beauty!) in the destruction of so many of my dreams. What I realize now is that, with every stroke, I told myself, keep swimming and you will get there. Miraculously, I was right.

For more on this topic, see my video, “Nothing Lasts Forever,” on YouTube: http://www.youtube.com/watch?v=AacAg3eCsCM

 

Where The Wild Things Are

Tuesday, September 29, 2009

Like many children of the 70s, I love Maurice Sendak’s book Where the Wild Things Are. I was at a party a few weeks back, talking about the upcoming movie, when someone asked, “Why are they even making that into a movie? It’s such a short book!” My heart softened, remembering the story, and I answered, “Because it has everything: gluttony, imprisonment, adventure, domination, loneliness, longing, love, redemption!” A boy runs away from the discipline and restrictions of home and finds power and freedom, only to return for the comfort and love that he left behind… It’s a beautiful story, an allegory for everyone. No wonder we love it.

I have been thinking, throughout this journey, about this idea of “the other side” of disaster, of what recovery is. I read a poem post-9/11 by Judyth Hill called Wage Peace:

Learn to knit: make a hat.

Think of chaos as dancing raspberries.

Imagine grief

as the outbreak of beauty or gesture of fish.

Swim for the other side.

Swimming for the other side: it is exactly what it is like, this journey of recovery and survivorship, because it’s not the shore you just left that you must head for – it’s some other shore, on the other side of a great body of water. Your future suddenly changes, and a forest grows in your room; an ocean laps at your feet, and you must make a choice: swim or drown. Sometimes, you are lucky: a boat sails up, to carry you to the opposite shore, like Max. Sometimes, you are not so lucky: you must swim, or sink.

The journey of survivorship is not like putting one foot in front of the other, because you won’t die if you stop walking. It’s more like swimming, because stopping means sinking, into the dark waters that threaten to swallow you – depression, recurrence, metastasis. You must keep moving. Moving puts distance between you and the moment/experience that changed your life forever. You have to keep swimming for that other side, because it is the side where your new life awaits, where you can dry off, regroup, and regain your strength without being surrounded by collateral damage. Turning back for the shore you left will not (and, in fact, cannot) save you.

My roommate in Kaua’i often walked with me on weekends around a loop near our house, where there was a view of the ocean. Walking it, you were never more aware that you were on a rock, in the middle of the Pacific, miles from a major continent. I feel a little like Max now, like someone who sailed, over a year and in and out of weeks and through a day, to a place where wild things were, things with terrible teeth and terrible claws, that threatened to eat me up.

I have said it before: cancer does not play. It IS a Wild Thing, and it will eat you up if you let it. Perhaps this is what I am trying to do with my 40-by-40: to say BE STILL, and tame it with the magic trick of looking into its yellow eyes without blinking once. To let it know that I don’t play either, and frighten it into making me its King.

Yesterday, my doctor’s nurse told me my labs were normal, showing me the report with a flourish. “You should frame this!” she said, smiling. “You know, in this office, we get used to seeing levels that are not in the normal range, but when I saw yours, I said, ‘they’re all normal!’ look, no Hs (for ‘high’) or Ls (for ‘low’)!” Now, I don’t usually put much stock in statistics, but in that moment, it was as if, like Max, I could suddenly smell my next life, on the other side of this adventure, like a hot supper waiting for me. I told my sister this morning, “I feel more like myself again. Not like that fake-it-till-you-make-it positivity, that is just supposed to carry you through the hard part; it’s real, genuine optimism, the kind you have when you believe in your own power.” It’s the kind of self-assuredness, I think, that allows Max to say to the Wild Things when they protest his departure, NO, to wave good-bye and sail away without regret.

There are moments of calm (usually post-wild-rumpus) where I feel a kind of peace, knowing in my heart that the time to leave this place I have been in for nearly a year is out there, that the other side of my journey is waiting, like Max’s still-hot dinner, for my arrival. I once told my roommate, on a walk, that it felt like I had survived a shipwreck and was now floundering in the ocean, not knowing which direction to swim. She said, “Maybe you don’t have to know. Maybe you could just swim towards the place where you’re done with this part, and then think about your next leg once you get there.”

I swam and swam, and here I am: washed up on the shore of a kind of “Health Island.” Where the Wild Things Are.

The Burning Bush

Monday, September 28, 2009

For a time during my battle with breast cancer, I felt like God had forgotten me. I saw my future laid out before me – unemployment, foreclosure, bankruptcy – and could not imagine that this was His plan for me. “Really?” I wanted to say; “Really? This is the plan?”

Personally, I think of God the way you think of a parent; I imagine Him making some decisions for me, and letting me make the rest. Watching with a benevolent eye and hating to see me screw up, but understanding that sometimes, I need to in order to learn a hard lesson. It’s hard to watch someone you love fall down, but sometimes you have to stand back so they can learn how to pick themselves up. The hardest part of being the parent, I imagine, is making your kid do something they don’t want to do, because you know it’ll be good for them. I can’t count the number of times my own father forced me to buckle down on my schoolwork, and truth be told, it took me 15 years to see that all the good times I had in college were the direct result of both of us working together to make that future possible for me. If I wasn’t blessed with a diligent dad and faith in his plan for me, I might have walked a different path in life.

Faith is so hard to have, especially in things you can’t see, hear, or touch. I mean, Moses at least had a burning bush! All I have is the feeling when I walk into the building I work in – that I’m in the right place – and two pieces of Scripture: Jeremiah 29:11 and Job 8:21, to reassure me that the future ahead of me is worth living for. So often, I feel like I’m blindfolded, walking by faith, not by sight. It’s terrifying to love a job that can’t pay your bills, to wake up every morning not knowing if something is growing inside your body that could kill you. But what else can you do if you want to maintain your sanity? You tell yourself, “God knows the plans He has for me; plans to prosper me and not to harm me. Plans for a hope and a future.” You say, “He will yet fill my mouth with laughter, and my lips with shouts of joy.” You remind yourself of other times in your life when you thought disaster was imminent, and you survived. You survived. You take comfort in knowing that you can’t take anything with you when you leave this earth – not your riches, not your debt. We come in with nothing and we leave with nothing, and no one knows when their number will be up. Not even people with millions of dollars or perfect health. All we can do is be thankful for each day, and the blessings in it. Wake up each morning and be glad for one more day – one more chance to breathe and live and love.

What gives me faith is not only gratitude for the blessings in my life, but giving God credit for those blessings. I keep a journal, and every evening before bed, I fill a page with things I’m thankful for – a light that stayed green long enough for me to get through it, a penny I found on the street, a kid who made me laugh at work. Little things, big things, it doesn’t matter – the important part is giving God credit by thanking Him for bringing them into my life. The distinction is important because it helps strengthen my belief in a benevolent, caring Creator who watches out for me. It’s hard to hate or fault someone you’ve been thanking night after night for all the good things in your life. I’ve found that, after months of keeping this very specific kind of gratitude journal, I’m more likely to ask God for strength to get through something than ask Him why it’s happening, or be angry with Him for bringing it into my life. Since I started crediting God with all the good things in my life, I trust Him more, and question Him less. You may say it’s just a psychological trick or religious hoo-doo voodoo, but if it gives me peace of mind, does it matter?

Yesterday, I sat in a sunlit meadow after hiking 11.5 miles with two of my best friends, catching up with the first boy I ever slow-danced with, who just happened to run into us on the trail. We were eating a delicious lunch and listening to great music, and I suddenly teared up, counting my blessings. How many survivors, three months after chemo, could hike Mt. Tamalpais, and enjoy the company of two friends (one who came all the way from Catalina Island!) who raised nearly $800 to hike with them? Who else but the Creator of the Universe could negotiate such a logistical miracle? To ensure that we all came to the right place, at the right time, in the right frame of mind, so that all our needs could be met in one sunlit moment? Breathing the sweet air of the Marin Headlands, all I could think was, He will yet fill your mouth with laughter, and your lips with shouts of joy. It wasn’t a burning bush, but that moment, I knew that God counted me, that He has a plan for me, and that it IS a plan to prosper, and not to harm me.

It is the hardest thing, especially for us Type As, to entrust our future to something intangible, unprovable. It is the biggest gamble, to believe in a Higher Power that is greater than ourselves, and the scariest part is the possibility that His plan might be different than our plan. What helps me is reminding myself that I don’t know everything, and cataloging those moments when things work out so beautifully that no amount of human planning could have produced the same result. That, to me, is proof of Divinity, and its role in my own journey.

Recovery and The Pre-Disease State

Friday, September 18, 2009

I’ve been thinking lately about the word recovery. In medical terminology, recovery is “a return to the pre-disease state.” A return to the pre-disease state.

We have, in our culture, an erroneous idea that we can somehow avoid change. That, should disaster strike, we can rebuild, take medicine, start over, and miraculously return to our previous (“pre-disease”) state. But we can’t, can we? We can’t ever return to the pre-disease, pre-divorce, pre-disaster state. The truth is, we can’t ever get back what we’ve lost, and that is what breaks our hearts in the aftermath of a tragedy.

I did the Avon 2-Day Walk this weekend (I’m still fundraising, if you’d like to donate) – the first event in my 40-by-40 series – and I guess I thought that completing it would represent my “return to normal life,” the first step on the road to being my old, active self again. I thought, if I do the things I used to do, I will get back to being the me I used to be. Before we even started to walk, though, I felt like a Vietnam vet at a Peace March. And for two days, everyone around me was walking to support or remember someone who had gone through what I went through, but I felt utterly disconnected from all of them. Only the survivors who cheered from the sidelines reached me – the women without eyelashes wearing baseball caps. Walking past them, I wondered if this is what concentration camp survivors felt like post-World War II, if they saw other skinny people with short hair, if they reacted to wrist tattoos the way I react to port scars, their heart sinking in the knowledge that their pain is not a solitary one.* On the walk, I would see a woman on the route, sometimes with her friends and family, sometimes alone, and think, I’ve been there. Every time I recognized someone clearly still in chemo, I would leave the walk to hug her hard and say, it comes back; it all comes back.

What I realize now is, I was wrong. It doesn’t come back. Your hair regrows and your scars heal, but you will never, ever get to be the you you were again, after cancer. The idea that you can take medicine and be the person you were before is a terrible illusion, one we maintain for the sole purpose of just getting through it. That is the tragedy of surviving something – you come out the other side of it different, unable to return to the life you had before.

The Hero’s Journey is the story of all survivors. It doesn’t ring true unless the Hero is changed by his experience. What happens, though, when the you that you are after cancer is not a person you ever wanted to be? I remember being in an ACS office earlier this year, staring at a poster for the Relay for Life, when someone said, “You can walk in the Survivor lap.” She meant it as a compliment, I’m sure, as an affirmation of my victory against a potentially terminal illness, but I started to cry, thinking, I never wanted to be in that lap. I wanted to be the one walking in support of the people in that lap, but I never wanted to be in that lap.

Women like my sister, who never imagined themselves as divorcees, fumble in their newfound singledom. My Aunt Audrey, who survived Katrina, sounded detached and confused when I talked to her after the storm, saying, “They said we would only be away a day, two at the most, and when we went back to the house, there was nothing left but a wall and the front porch. All my jewelry was in my bathroom drawer, and I don’t even know where that is anymore.” We tell divorced women to start dating and hurricane victims to rebuild and cancer survivors to wear pink ribbons, and it all feeds into this idea that we can somehow get back what we’ve lost, but the truth is, WE are the Orpheus in the story, NOT the Eurydice. We think that we can go into Hell and bring our old selves back with us to Earth, but we can’t. Try to look back, and we lose her forever.

In the opening remarks of the Walk, the announcer said that every three minutes, a woman is diagnosed with breast cancer. Moments later, she said that there are two million survivors in the U.S. alone. I thought, Jesus, that’s not very many. Dr. Bernie Siegel, in his books, talks about cancer being a manifestation of unrealized potential. The idea is that, if you deny your sense of purpose, your true path in life, all that energy manifests in your body as cancer cells that refuse to die. Cancer gives many people a new start: an excuse to be the person they never gave themselves permission to be. For others, though, the fallout is unsettling, disorienting, and discouraging. All they want, despite their very existence being threatened, is to go back to the way they used to be. When they realize they can’t, they have one of two choices: build a new life, with a new future, or give up. To be or not to be, Hamlet said. I wonder, though: who is the coward – the one who sleeps, or the one who chooses not to?

My grandfather said to me once, regarding his bypass surgery, “I sometimes wonder if it was worth it.” He struggled in his last months with horrible edema in his legs, which got so bad he couldn’t walk or drive a car. This man, who was the captain of a Navy ship, could not even go to the bathroom by himself. Realizing he could never be what he was before, that his future could never be the future the old him saw for himself, he took his own life. I often wonder if my mother felt the same disillusionment; if her suicide was the result of her life ending up in a corner she could not see how to paint herself out of. She was 39, divorced, without custody of her children, unemployed and mourning the loss of her own mother, with two failed careers behind her. To justify her decision, I tell myself that she was simply incapable of imagining her recovery from what must have been the hardest year of her life. Many women can’t, after disaster. They simply cannot see how life can get better, cannot summon the strength for another climb up the ladder. I have been there myself. Perhaps what has saved me is the other half of my genepool – my father, who was such a wonderful example of resilience. Twice divorced, laid off at 53 from a company he had worked with 24 years, he died from an enlarged heart the weekend before he was to open his first small business, six months before his first child graduated from a 4-year college. He died because his heart was too big. This was the same man who always told me, “Look 20 miles ahead,” perhaps to remind me that the solution to one’s problems may be far away, but if you can at least imagine it, you can get there one step at a time.

I play a game on my iPhone sometimes called BPop. There are five levels, each with the potential for scoring 10,000 points. I have gotten such a high score on it (29,000) that now, if I do not get 7,000 points by the first level, I reset the game and start over. Why play through four more levels if I cannot beat my highest score? Some people see a reset as a step backwards – a starting over at square one – and some see it as a second chance, to best your highest score. Your resilience after tragedy depends on your perspective, always.

This is what post-cancer looks like: resetting. Resetting everything. Building a ladder and climbing it one step at a time. You make lists of things to get through, things to check off, and those things are your rungs. Each time you reach a hiccup (an unforeseen infection, a claim rejection from your insurance), you start over, but you keep climbing. Two steps forward, two steps back (sometimes three steps back!). The progress from diagnosis to remission is mind-numbingly slow, and sometimes all you can do is count the days that pass, the days that mark the distance between treatment and non-treatment. You cannot say “between illness and health,” because you never feel healthy when you have had cancer. You are always acutely aware that it is something that can come back, despite your efforts, but the necessity of feeling safe in the world forces you to at least note the distance between the meat of your illness and this post-illness state where you are at least not being treated for it. As the distance increases, so does your security. At moments, you can even forget, during this post-treatment life, that you were ever sick. Time inevitably marches on, and I tell myself, I will have a day in my future when I do not have a doctor’s appointment next week, when I am not taking a pill to treat something that threatens my life. Perhaps on that day, I will feel, not like my old self, but like a person who has reached the other side of some deep lake I had to swim across.

Will I ever recover? I ask myself. No, I realize, but I can survive, as someone else. I can swim for the other side, where a new me awaits.

Getting to the Top

Saturday, September 5, 2009

This afternoon, I hiked the Lafayette Reservoir Rim Trail – a trail I haven’t hiked since I left California over a year ago. At 4.7 miles, it’s not that far, but it has six pretty steep hills, including one that looks almost vertical! I did the loop twice, to prepare for my Peak Hike to Mt. Tam for breast cancer at the end of the month (you can see pictures on my Twitter Page). That hike is 11.5 miles, and I want to be ready.

Alone with my thoughts on the trail, I realized something: when we fall down, and have to pick ourselves back up, the hardest part is believing that things can be okay again. We might start to think, maybe I’m not special or destined for greatness after all. Maybe I’ve just been lucky the last few years, and my luck has finally run out. When I hit my bottom in Kaua’i, I thought to myself, if all I have left to look forward to in this life is unemployment, foreclosure and bankruptcy, why am I still going to chemo? I could not even imagine myself, in just six months, employed at a job I love, surrounded by people who make me smile every day, hiking a double loop of a trail a mere 10 weeks after finishing chemotherapy. I would have missed all this, if I had allowed myself to check out of life.

I was thinking today about Persephone and Eurydice. In Greek mythology, Persephone is the daughter of Ceres. Hades, the master of Hell, falls in love with Persephone and kidnaps her to be his bride and live with him in the Underworld. In another story, Eurydice, the wife of the musician Orpheus, dies after treading on a snake. Orpheus travels to the Underworld to bring her back and plays music for Persephone, softening her heart. Persephone tells Orpheus he can lead Eurydice back to the world above, but only if he walks in front of her, and doesn’t look back. At the last moment, though, his insecurities plague him, and he turns around, only to watch Eurydice vanish forever.

When you find yourself in Hell, you must ask yourself, am I a Persephone or a Eurydice? Is your Hell a place that you think you will just have to get used to, to learn to live in? Or is it a place where, with enough love and devotion, you can climb out of? And I’m not talking about pining away, waiting for an Orpheus to come and rescue you. You must be your own Orpheus. You must rescue yourself, one step at a time.

With every step I took today, I imagined myself climbing up and into my new life, into the life that, at one time, I had no hope could even exist. I look in the mirror now and there are eyelashes that weren’t there two months ago, a body that, thanks to Lou Kristopher’s Boot Camp, is stronger and healthier than it’s ever been. For the first time in months, I can’t just see the light at the end of the tunnel. I’m there, standing on the threshold.

All I have to do, it seems, is keep moving forward, to the life that is waiting for me on the other side.

Wows and Woo-Woos

Wednesday, August 12, 2009

I look in the mirror these days, and while I sometimes still don’t recognize the person staring back, I know I am in there somewhere. I think about this journey I am beginning, of survivorship, and all kinds of metaphors come to mind.

A woman in my support group here asked me, while we were at our second radiotherapy appointment together, “Do you know what it means when the machine is clicking? Are those the radiowaves shooting out, or is it scanning us?” She was a sweet and somewhat nervous woman, young like me, and had been struggling with a stressful work environment where she felt manipulated and under-appreciated.

We had talked before about her job and how hard it was, but also about how good the money was, and I had asked her, “I’ve read about women with cancer saying, ‘I will make this work if it kills me,’ when it comes to difficulties at their jobs. But what if it does? What if it kills you?” She replied, “I know, I know, but I can’t afford to quit right now.” I know. I know. I thought, at the time, yes, I knew once too. Yet here I am. Stage IIIA: just shy of metastatic breast cancer.

Some people who fight cancer take comfort in knowledge. White blood cell counts. Survival odds, based on statistics, culled from years of Big Pharma data. You can find these statistics online at various websites devoted to the numbers of cancer. If you have x number of treatments of y drug at z intervals over a months, then you have a b percent chance of being alive after c years. Numbers comfort many people, because it gives them something to hold onto that has been verified by the very industry that is treating (and, they hope, curing) their dis-ease. In a land of uncertainty, numbers comfort us.

The thing is, if you ask any scientist what a fact is, they will have to agree that a fact is simply an opinion that most people agree on. At one time, remember, it was a fact that the earth was flat. All science can really tell us is that x number of people have tried y, and it worked for z of them. Drugs work for some people, and don’t work for others. Why they work is just an assumption, based on other assumptions. It’s also important to remember that why they don’t work is an assumption too. For all we know, listening to Van Halen’s  “Dance the Night Away” cures cancer, but because someone isn’t asking people in chemotherapy if they’ve heard it during the course of their treatment, we don’t really know, do we? My friend Greg ignored all his doctor’s advice when he was diagnosed with Hodgkin’s lymphoma at 20 years old. He drank Natty Light nearly every weekend with his fraternity brothers, believing he was going to go out of this life with a bang. Six weeks later, his tumor had shrunk. Six months later, he was in remission. Does Natural Light beer cure cancer? We don’t know. We don’t know.

The truth is, I have never put *that* much faith in facts or numbers. My opinion is, my body will either heal itself or it won’t. I will either live or die, and only a certain amount of my life is really under my control anyway. What fighting cancer has taught me is that wrapping myself up in judgment over whether my numbers are “good” or “bad” this week or this month can only serve to increase my anxiety, and ultimately, make my life less enjoyable. What keeps me going, instead, is to spend what time I have left on this earth – be it 5 months or 50 years – taking comfort in what makes me feel good, strong, and proud, and not wasting time or energy worrying about being weak, unhappy, or guilty. There will be times in the years ahead (I hope, many years ahead) when I feel weak, unhappy, and even guilty, but they will pass. They will pass! As the Good Book says, this too shall pass.

I have been very careful, in my cancer fight, about surrounding myself with people who have positive, constructive energy. I realized very quickly that people with negative, destructive energy – even when it is unintentional – bring me to a place that drains me of my strength and positivity. I can almost feel my immune system weakening in the face of negative energy. Of course, I knew that, if I was going to be in a giant, clicking, radioactive machine every day for six weeks, I would have lots of time to think about the tumors that had grown in my breast, the likelihood of them growing back, and my long-term odds of surviving breast cancer. I knew that I would need to use the time constructively, not destructively, to help me heal (because ultimately, it is not doctors who heal us, but our bodies that heal themselves). Sitting in the waiting room, next to this woman that I realized I would see every morning for the next month and a half, listening to her worry about her job, about the machine’s effectiveness, I struggled with how I could possibly be supportive and encouraging, and still protect myself from her clearly unintentional drain on my energy.

“I guess I’m just wondering how it works,” she asked, almost to herself, as we sat waiting for the nurses to come get us. I visualized the scene I had been picturing the first couple of days of radiotherapy, that had been carrying me through my own worry, and debated on sharing it with her. “Well….” I said, “You know that part in Lord of the Rings, when Frodo is weak from being stabbed by the Nazgul, and Arwen has him on her horse, and they’re running from the Black Riders?” She nodded, presumably wondering where I was going with this, and if “chemo brain” was a legitimate phenomenon. Suddenly, I found myself tearing up. “Well, when I am in that machine, and I hear it clicking, I imagine that there is this part of me, that is weak like Frodo, from being wounded, and that the things that wounded me – my cancer cells – are chasing me, but that there is this also this stronger part of me, that is like Arwen, and she is carrying me away from them. That she is riding for her life and mine, with all the strength that she has. And when I hear the clicking of the tomography machine, I imagine that it is the sound of her horse, galloping with all the strength that it has, to carry us both away to a safe place. And when the clicking stops, I visualize Arwen calling the river to come and drown the Nazgul, and the radiation washing over me like the river, melting my tumor like they’re it’s the Wicked Witch of the West. So when I open my eyes, I’m like Frodo, opening his eyes after being healed.” I collect myself, wiping my eyes. “I’m not sure what’s really going on when they put us in that machine,” I tell her, “but that is what I think of when I hear the clicking.”

She looked at me, a little bewildered, almost as if she had not really been listening, but before she could say anything, the nurse came in and called her to come down the hall. I sat there after she’d gone, wondering if she pitied me, a woman who invested in daydreams rather than science, and if I had helped her at all by sharing my story.

There are some people, I guess, who just don’t find comfort in what they cannot touch or measure. I am thankful, though, that I am not one of them.

The Big Bang

Tuesday, August 11, 2009

A few days before I left Kaua’i to move back to California, I went to Borders to pick out a journal. It was going to be my “new chapter” journal – the one that I would start when I closed the book on what was probably the hardest 9 months of my life. The one in which I would write a new story, with a happier ending.

At the time, I was hanging on by a thread. I was in one of those places where you feel like God has forgotten about you. Not in a mean way; more like He’s been really busy with getting Obama into the White House and keeping Palestinians from fighting with Israelis and making sure one less human rights activist is being arrested in Myanmar (in considering time-space arguments that explain how Santa is able to get into billions of chimneys in a single night, I often think that God’s ability to evaluate a trillion prayers a day, and still have time tolisten to mine, must have something to do with an as-yet undefined unified field theory). In any case, when I walked into Borders, I said a tiny prayer that He would help me fine a journal that would, perhaps with its cover or pages or binding, give me a sense of hope about the year ahead of me, which I so desperately needed to be better than the year behind me.

As I walked towards the giant wall of journals, I immediately spotted a pale pink/peachy-colored one, nearly in the center of the wall, covered in iridescent butterflies. For numerous reasons that I will have to explain in a future journal entry, butterflies have been a kind of lietmotif running throughout my life, and as I closed in on the journal, I relaxed just a teeny bit. On its cover was a quote from the Bible, a quote I had read just a few days earlier in a card from a Christian friend and 3-time breast cancer survivor: “For I know the PLANS I have for YOU (Jeremiah 29:11).” And wouldn’t you know, I nearly burst into tears right there in Borders. I took the journal off the shelf, my hands (yes) shaking a little, and opened it, only to find another quote inside from the Book of Job: “He will yet fill your mouth with laughter, and your lips with shouts of joy.” How does He do it? I wondered. How does God hear you, and let you know He hears you, when you need it most, despite all the other things on His plate? Perhaps Stephen Hawking, a man who shares my birthday, knows.

In any case, tonight, as I open the journal to write in it, the quote at the top of today’s page makes me smile. It is (of course) from theoretical physicist Edward Teller, and is another one of my favorites: “When you come to the end of all the light you know, and it’s time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or your will be taught to fly.” The quote is particularly appropriate, considering I just registered for my first 40-by-40 event: the Avon 2-Day Walk in Los Angeles September 12-13. Which means, I have about 33 days to raise $1800 and be able to walk 40 miles in 48 hours. This is the part that feels like the top of the roller coaster.

All yesterday, I kep thinking, “Oh my God…. Oh my God….” It’s starting. My 40-by-40. My next five years. My journey to survivorship. Considering this, the first chapter in Part II of my story, I can’t help but hear the faint crack of a starting gun, somewhere in an alternate universe where I am becoming everything I want to be.