Among the things you taught me were what kind of paste to use on my just-after-chemo hair, and how to style it with a headband. You taught me how to wear eye liner, too, and how to talk back to Dr. Batman Earrings. You taught me how wild and hopeful and brilliant the human spirit can be. You taught me how to hold paradox, know dark and light, and insist on the biggest and the boldest dreams.
We met in January of 2014, only days after my hair had fallen out. You wore a hat, and you showed me the tiny hairs growing on your head. You were so proud of them. I was so envious. Our friendship was tenuous: here and there at YACN, a text or a coffee, pictures of each other after surgeries. An immediate knowing was there, though. We knew each other. We could imagine each other. With you, I was visible.
And then we went on retreat together and we were roommates and we had a very special Mama Bear to love on us, and their was a hot tub and we soaked and looked at the stars. We clung to each other. We saved each other snacks from dinner. Our Mama Bear left us steaming cups of coffee in the morning, and you pressed snooze until the last literal second. When they spoke of death and dying, we escaped. We sat on a bridge overlooking the creek, and we dangled out feet. Your shoe dropped and I almost broke my ankle jumping down to get it. When I was in the creek fishing out your shoe, you looked down at me and said to me "I've just spent a year trying not to die. I'm alive. I'm not f*cking talking about death." I remember these words so vividly. So clearly. So instead we laughed until we cried.
We loved each other hard. You were the first person to ask my about the grief of losing my left tit, and to wonder with me, if the inside of your body looked different from your surgery, and what that might mean. And then we met two more women just like us- Aimee and Kristina. We were a cohort. A quad. We were an emergency picnic when someone got bad news. We were an intense and honest and real stream of text messages. We were the place for word vomit and big feelings and cancer jokes. We were mad and funny and we had a list of stupid sh*t people said to us and we thought we should publish a coffee table book. We named ourselves. I don't know who named us, or when we started calling each other CPs, <cancer peeps> but I do know without a shadow of a doubt that you were my CP, and I was yours.
We were going to get old together. We were going to grow wrinkles. We were trying to build our lives. We were doing that even as you got news that was not good. We were witnessing you continue to hope. We were having babies. We were going to rock in rocking chairs and drink old lady drinks and be healthy and live long.
Most of all, you wanted to be a mama. Like me. When we first met, once we laid in bed and talked about how mad we got cancer when we wanted babies. But we also talked about how we were going to have those babies. The embryos you made were your hope on ice. They were your future. They were you. I would give just about anything for you to hold those babies, but I don't need to tell you that. You already know. Each time I cried because I wanted so badly to have the pregnancy our surrogate carried for me, you were there. Each time I panicked a little about a baby, you were there. Each time I worried about cancer during my miracle pregnancy, you soothed me with your sweet words. Each time I thought I had cancer in my toe or that my sore throat was lymphoma, you got your nurse-voice on and comforted me until I believed I was well again. When M was a newborn, you were there at 1 am and 2am and 3am when everyone else was sleeping. And so we'd text: back and fourth about my babies, back and fourth about the ones you wanted.
Again and again and again you asked for pictures of my girls and that meant the world to me. I know how much it hurt to watch people get pregnant, and even so- you wanted more images of my girls, and what delight I had in sharing them. Even as cancer chiseled away at your baby dreams, you held onto your hope on ice- it was a deep knowing, a clear wisdom, an unflappable desire.
I have been reading and rereading our text messages about your babies. About my babies. About hope. They are all about hope. Even when they are angry and sad and bitter and livid, they are so hopeful. Through your words courses the deepest hope I know.
Thank you for loving me, dear one. Thank you for loving my babies. Thank you for being my CP. Thank you for all the chats and texts and late night calls when you had insomnia and I was nursing the baby. Thank you for the sass and the hope and all the love.
I am so grateful I got to know you. I am so grateful we shared big dreams. I am so grateful I have a little piece of you tattooed on my left arm, right next to my heart.
I can feel you in the breeze. It is funny because you weren't much of a woodsy girl, were you? But here you are, whenever I start to panic about who is going to answer my nurse questions or how we will ever balance out our CP quad with you-- there you are, on the gentle breeze. Of course we can only be balanced with you and so we will feel you, in the breeze and in our hearts and in the sunshine.
I am going to wait for you to come and visit, when I am old. I will wait in the rocking chair with the red cushion, and you'll see my wrinkles. Come visit me, you sweet and gentle breeze, you brilliant and blazing and sassy light, you kind soul.
So much gratitude for being my friend, even when I wasn't very friendly. Perhaps especially then.
Love you so, so, so much dear one.
P.S.: I've been missing you, so I made you this video for our CPs. It's in our texting stream for us to watch when we miss you. I love you so so so much.
I am told that when we were both six, we were on the blocks at a swim meet. And that the starter's gun sounded, and everyone dove in. But my goggles were funny, and I was trying to fix them, lest water cloud my vision.
And I am told that you waited.
That even though it was a bigger race (Pleasant Hill Dolfins versus Walnut Creek Swim Club) than we could imagine, you waited. And I am told that even when they yelled GO DEVON GO, you looked them squarely in their eyes and explained "I'm waiting for Chelsey to fix her goggles." And that then, once everyone was nearly across the pool, I was ready and you saw that I was ready, and that together, we dove into the water and swam. Presumably, we came in last. And presumably, our come-in-last scores did not help the Pleasant Hill Dolfins-Walnut Creek Swim Club rivalry. But presumably, you didn't care. Because decades later, after leading the Dolfins to victory again and again, you went on to coach Walnut Creek Swim Club, because that was what was best for you daughter.
I do not remember this goggle-fiddling story. My parents told it to me. But I can feel it's truth. Because in it, I can feel you, Devon. It feels exactly like something 6 year old you would have done. It is what six year old you did.
You didn't care, Devon, about winning. You didn't care about rivalries. You didn't care about what other people thought. In 1989, you cared about waiting for your little friend to dive off the blocks with you. In 2017, you cared about your daughter having a positive, hopeful, sweet swimming experience. You cared about friends. You cared about feelings. You cared about being a positive presence in the world.
You became the best friend of my best friend, Rebecca. She loves you so. And when I reconnected with her, I reocnnected with you, too. I am so grateful for you both.
You were diagnosed after me, Devon. First, I was diagnosed with cancer and first, you reached out. You told me you loved me, and I didn't respond because I was afraid. But I did keep writing my cancer blog, and you read every blog, and you kept telling me you loved me. Because that's how you were. And I heard you, even if I didn't know what to say.
And then you were diagnosed. And then it was my turn to reach out. When you started chemo, I sent you a box full of wigs- purple and pink and red and brunette and bleach-blond with roots. This was a box of wigs that I'd already shared with others, but you were the first to wear, as I had, all of the wigs. I was nervous to send that box to you, but of course you welcomed it with open arms, and you breathed new life into it.You were the first to add more wigs to the collection and to add hats to the box. How I cherished the photos of you in the pink and purple aqua wigs that I'd loved so.
You stuck a little notebook into the wig box, and on the front of it you wrote "The Sisterhood Of The Traveling Wigs." Inside of it, you wrote some of your own stories. You wanted other young women going through cancer to get this book, and to read your stories. You didn't care who they were: you wanted them to know they were not alone. And for that, I am grateful. Other young women have read your words, and responded to the questions you posed. You yourself, needed that box of wigs again, and you added more stories, reflecting on your own and writing back to people you'd never met. That box will live on, Devon. A young woman desperate to have a child has it right now, and she's told me about the stories she read about you and Amelia, in the Sisterhood Notebook that you created. Your words, your thoughtfulness, your love for other young women with cancer lives on in that notebook, and in the Sisterhood of The Traveling Wigs.
We talked many times, of young adult cancer. We sipped tea and wine and lattes, and you offered hand me downs and leggings, and we wondered about how to solve the total mindf*ck that is young adult cancer. We had a hundred ideas, but we never did anything about them, maybe because we so easily slipped into talk about the swim team days, about the swim team drama, about the many friends we grew up with. You knew everyone, Devon, and you updated me on people who I hadn't seen in ages.
In your simplicity, you were totally brilliant and kind and full of light. I hate that what reconnected us was cancer; and I am intensely grateful that we got reconnected.
All my love, sweet Devon. I promise I will take care of Rebecca. And I know she- and your family- will take care of your beloveds Amelia and John.
Love you always,
Many people have carefully and beautifully explained why the persistent nature of what my cancer-friends call "Pinktober" does not help people who have/had breast cancer and most of the time, why it doesn't help us get closer to a cure for stage 4 breast cancer, which is the kind that kills (and thus the kind we need a cure for, and no, mammograms won't save us from stage 4).
So, here's a list of things you can do instead of sharing the color of your bra or some other random chain, and instead of spreading Komen-pink madness, and instead of using hashtags suggested by your nearest chain clothing store, online store, kick-boxing store, or other capitalist store.
I want you to buy, do, and consume in ways that either actually help and lift up and contribute to the lives of people who HAVE HAD or HAVE breast cancer, OR that offer monetary support, or funds, or links, or support to groups that actually are working on curing stage 4 breast cancer.
We need a cure. Thanks for your awareness, we've got it now. Now we need a cure for stage 4. So if you're gonna hashtag, it's #stage4needsmore or #metavivor.
One of the first social emotional lessons most children receive centers on the “I statement.”
The premise is pretty basic: speak from your own experience, beginning with “I.” So instead of beginning your story with “you….,” the suggestion is that we begin our stories with ourselves. Pretty basic, but also pretty deep.
The I statement assumes listening to each other- and speaking from our own experiences, instead of narrating others’ experiences- is a peaceful way to be in the world.
You shouldn’t be so angry. You’re too negative today, try being happier. You can’t expect a roomful of strangers to give your baby “good” compliments. You should lighten up.
These are some of the comments I’ve received for writing about how my baby and I experience an onslaught of comments about her prettiness whenever we go out in public. Some from people I know, some from trolls.
They all begin with you.
Not a single one of these commenters spoke from their own experience.
Instead, they narrated mine, presumably because me sharing how it feels for me and my baby to receive this onslaught of comments about prettiness threatens them or their way of life.
You functions to make me carry the weight of the comment. It functions to release the speaker from responsibility. It functions to neutralize the speaker and cast harsh light on the spoken about.
I suppose my writing threatens a way of life. I guess that suggesting that a patriarchy exists and that we all participate in it really brings out the feels in people. It’s pretty shocking (though not surprising) to recognize the ugly feeling that leaks out just because I suggested language matters, even and especially to baby girls.
I’ve never before considered the “I” statement as a feminist, political intervention.
But it is just that: speaking from our own experiences is risky. Listening to others speak from their own experiences means making ourselves vulnerable because it means we might have to consider our own everyday participation in some of these challenging dynamics.
Can you imagine, if instead of “you are being negative” they said “I’ve never read anything like that. When people tell my baby that they are pretty, I feel good because no one ever told me I was pretty growing up, so I felt ugly. I want to make sure my child hears that she is pretty.” Ah, now the conversation is open. Now we can get to the real stuff: feelings hurt because we never noticed. Now we can heal.
Can you imagine, if instead of “lighten up” they said… “So what would you say? What do you say? What else is there to say?”
Can you imagine, if instead of “you’re too angry,” they reflected “One time, I was really angry about X and so I did Z,” or they asked “Share your fire with me, and I’ll share mine.”
Can you imagine if they put themselves on the line, shared what’s going on in their hearts, offered up their vulnerability?
Things would be so different. We all access knowledge from our different experiences; our different experiences are born of our diverse bodies, lives, languages, experiences, families, and dreams.
Feminist research methodologists have long urged us to be clear about our own positionality: what that means is that when we are trying to know something new, we need to consider how our lives and histories inform what it is possible for us to know at all. Different kinds of people have different fields of knowledge that are possible.
How delightful, to recognize this value that I hold so dear in the very early lessons we (try) to impart to our children: I statements.
Something I’ve learned from all my work with diverse communities is that we humans are desperate for discursive space. Desperate to be heard. Desperate to tell our stories.
You though, you…. Silences. It shuts us down. The only way to make sense of this persistent you is through silencing. You is a silencer. And so, it really is time to go back to basics: I statements. Let’s speak from our experiences, and let’s offer some softness, some protection, some vulnerability to the stories we hear from each other.
In less than three hours, my seventeen month old daughter received compliments including “you’re so pretty,” “you’re so cute,” “your dress is adorable,” “that bow is the prettiest and so are you,” or some variant of the above more than seven times. And then I stopped counting.
Afterwards, I went grocery shopping and a stranger looked at my gorgeous, radical, wild baby girl and said, “you’re so pretty.” And I looked right at my baby and in earshot of the commenter said, “And you are so strong, and so smart, and so beautiful, and so kind, and so creative.”
My seventeen month old is beautiful, indeed: she has big, soulful, dark eyes. She has a ton of gorgeous, fine hair that I often pull into a top-of-the-head ponytail. She just learned to spin in circles and she likes to dance. She always points out airplanes and she has a sweet little belly that she likes to fill with cherry tomatoes from the garden, and she's got a smile that can light up a room. She is also a baby living in a patriarchy and we cannot possibly understand comments about her outside of this context.
What we say matters, and when we talk about something a lot, it garners importance.
So when the thing folks say the most often to my little girl with the soulful eyes is that she is pretty (and I am here, attesting to the fact that this is what most people say to her, most of the time), the message she receives is that being a pretty little girl is what matters most. This is communicated not by each individual but rather, by the sheer number of comments about her looks. It’s as though everyone got a secret message to comment on her prettiness.... but actually, it’s culture. This is how culture works. This is how we learn gender, through a million tiny comments about looks... all made by people who would surely agree girls are strong. People who give money to Malala and who support their daughters to get graduate degrees and who advocate for equity.
What she hears most is: “You’re so pretty!” She is learning this is what matters.
After all, it’s what we tell her the most.
Almost everyone we meet comments, “wow she is gorgeous,” or “what a pretty little thing,” or “look at those eyelashes!”
People on the street. The cashier at the grocery store. The mom of boys at the park. The neighbor. Someone’s mom’s friend. The aunt, the friend, the dog-walker, the museum attendant. Everyone.
I am her mama, and I hear the onslaught of comments, and I feel them.
And I can't look at her and hear these comments without feeling the little girl inside of me- the little girl who not pretty enough. Sure, no one ever said I wasn’t pretty enough- but there was an onslaught of comments about looks- and then there was their absence.
In the same time frame that my baby was told she's pretty again and again, I heard two comments about a a young woman's prettiness as compared to Disney princesses: “She looks like Snow White,” someone said, and then only a half an hour later about a completely different young woman, someone else commented, “total Disney princess, that one!” To my knowledge, I have never been described as a Disney princess. I have been described as “thick,” “freckley,” “Miss Piggy” and “pasty.”
And because I learned early on, by the sheer volume and frequency of conversation about looks that it matters what girls look like, I knew- early on- that “thick,” “freckley,” “Miss Piggy” and “pasty” were not good ways to look. These comments were the absence of Disney princess comments.
Absence is a tricky thing. And yet, when we are talking gender and girlhood, absence is everything: the absence of feeling beautiful is, but what other than failure? Failure to be, to do, to become girl or woman.
Never was this so clear to me as when I lost all my hair and eyebrows because I had cancer, only to be offered a make-up program to show me how to hide my failures at performing womanhood. There is a cancer-beauty program called “look good feel better” where women who are mostly sicker than they have ever been are taught to hide their difference- their ugliness- by applying makeup to look better (more like a Disney princess?), and in doing so, to feel better. I was handed a mirror and a bag of make-up give-aways and led through a workshop on how to paint my eyebrows on, by a woman who explained cheerily, "your husband will never know!"
She forgot to ask if I had a husband. She assumed my body should be concealed and prettified so a man could consume it.
From when we are babies to when we have cancer, we learn that much of our worth hinges on being and feeling beautiful.
If there is one thing I want for my baby with the soulful eyes and long lashes? It’s for her worth to never hinge on being- or feeling- beautiful.
I don’t care if she is beautiful. Frankly, I don’t care if she feels beautiful.
I care if she feels strong. I care if she feels creative. I care if she feels willfull, excited, sad, nervous, or hopeful.
It is not the same thing as commenting that a baby boy is handsome.
It is not the same because we know that boys receive many comments about their abilities, their actions, and their futures in ways that girls simply, do not. We know that even us parents speak differently to our boys than to our girls.
It’s not the same because boys don’t experience- writ large- a crisis of identity hinged on their gender, a falling out of confidence about what a teenage girl recently described to me as “science and stuff I’m good at but I’m not supposed to be good at.”
I’m sorry, but no. Handsome spoken about a boy and pretty spoken about a girl are not the same.
I only have girls.
I know this hurts boys and girls and genderqueer people.
Pretty is not powerful. It’s not strong. It’s not kickass.
It’s limiting and patronizing.
For girls, but also for those who are not girls- for your boys and your gender queer children.
So yah, the next stranger that tells me my girl is pretty?
I promise you this will happen tomorrow if we go out in public even once.
I’ll be sure to say, loudly enough for her to hear, that the little girl with me is also…. All kinds of other things.
I wish she would say to my little one, instead... "Wow! You are getting so big! Do you love to run?" or "What a love-bug- does she just adore reading books?" Or anything that focused on anything but her looks.
Be the single drop of difference in our life. Know that everyone is saying something about our looks, so decide to say something different. Comment on the language we are speaking, describe her as brilliant or silly or curious. Anything but "she's so pretty."
It’s easier to do with strangers than with family, but I’ll do it with family, too. I will, because my feminist work is in my home and with my family, and certainly, for and with my daughters.
And whenever I can, I’ll kill misogyny in its most potent form: that insipid, complementary, micro-comment form that makes up a life. I am a feminist mama, and I might f*ck it up sometimes, but when I can gather my strength I will respond.
Always. All ways.
Last night I participated in an event full of community building. People told stories and presented their ideas. I listened. We played games. I was introduced as someone with three children under three- which is a way I love to be introduced. I am proud of having three under three, and though it’s crazy sometimes I also love this about myself. And it is such a core piece of who I am right now. It was lovely.
And then we were getting ready to go home and woman about my age said to me, “wow, three under three, how is that even possible?” I smiled and explained- a set of two-year-old twins, and a little baby sister. She looked me in the eye, laughed, and said “Oh! That baby must have been a big old accident!”
I had no idea what to say. Literally. I could not even bring myself to entertain the comment. And so, I turned away and started a conversation with someone else.
Because this person had barely met me. And if she really knew me, she would have known that this little baby that turned me into a mother of three was no accident.
If she really loved me, she’d know I don’t owe information about my body, my family planning, my children, or how my littlest love came into this world to anyone. But she didn’t know me, and she asked the question as though I was sure to be on her side, to give over my experience for her viewing, to collude with her. She consumed my body, my story- and she forgot to ask me first.
If she really knew me, she’d know that after my cancer treatment, my oncologist told me I couldn’t have a baby. That to have my twins, I went out and found a surrogate. She'd know how I cried buckets of tears about this whole thing.
If she really knew me, she’d be intimate with the depths of my grief around not having been able to carry my babies in my womb, she’d know how much I wanted to breastfeed my twins. She'd know how much grief there was, and is.
If she really knew me, she’d know how hard I fought against other people's fear that this pregnancy could harm me. She'd know how this little baby who took up residency in my uterus even though it was impossible for me to get pregnant was the most hopeful, sparkly, incredible thing that has ever happened to me.
If she really knew me, she’d be able to feel the depth of my experience- she’d know I was so grateful to be pregnant. She’d know how breastfeeding this baby was the first time I’d experienced my breasts as life-giving since they tried to kill me with cancer.
This baby was no accident. She’s the universe conspiring to bring her into my life, into the world. She’s the most precious, hopeful signal of my own health. She’s so necessary in our family. She’s brilliant.
Being pregnant with her was everything. It was my body, finally succeeding. It was me, proving my own health. It was a glimmer of hope and future and possibility, born from the same body that tried to kill me.
My children are no accident.
My body was slashed and burned and torn apart, but this brilliant child still decided she could grow in me- she still decided I was enough.
That pregnancy was anything but an accident. Maybe it was a miracle. It was definitely hopeful. I am so very grateful.
And so I have to wonder. If she knew the depth of story behind that “she’s a mother of three under three” introduction, what might she have said?
And how am I ever supposed to offer this story to people I’ve only just met?
How am I supposed to protect my heart, then, from these comments?
How are any of us ever supposed to know that underneath each shared moment, there is a story as big as this one, a life woven in ways that we might not ever understand?
They birth our reality. Choose them wisely. Tread softly.
Know that behind each heart, there is a story- one you may never expect.
So, let’s use questions to open up little spaces of heartfelt curiosity. Let’s allow questions to be safe containers for connection, for making ourselves visible to each other.
What would it mean if, instead of assuming accident, or negative relationality to something surprising, we assumed hopefulness, or genuine wonder? What if we just opened up a space, and let the person having the experience define it for themselves?
Crafting a purpose statement, and revisiting that statement regularly can help to ground you in yourself and to foster a life that resonates with who you are and what you most desire. Thinking about doing this, though, can feel daunting and intimidating.
Take a moment and go read Robert Frost's poem. What are the many paths that you might have walked? That you may still walk? All of us are capable of writing myriad stories about our lives. It is about choosing what we want, choosing where and when we feel most resonant, and knowing- always- that you can forge a new path, do a u-turn, or stop and rest any time you need. So, first of all- if you have not already worked on your values, go back and do that.
And so, let's play. Nothing is set in stone. We're just... playing with purpose. Give yourself the chance to just imagine what your purpose could be.
Begin with your values: make a list for yourself.
Now, get a blank piece of paper. The goal here is to brainstorm verbs that resonate with how you might like to do your goals. Write everything down. Do not discriminate- it's just a brainstorm! We want a whole bunch of verbs to pick from.
Now, use those verbs alongside your values to craft a couple of purpose statements. Be creative- draw, make maps, whatever. Be silly- just imagine. It doesn't matter if your first couple of attempts are weird or not "it." Just keep going. Imagine yourself clearing the way to get to something.
As you iterate, take some time to reflect. Which statement feels best? Are there certain pieces, words, or ideas you want to pull from different versions?
Imagine! Create! And once you're happy... read your purpose statement every morning. Post it where it is visible and you can see it. Remind yourself where you are going...
Here are some of my initial attempts at crafting my purpose statement.
Dear Left Breast,
It’s been exactly four years, since I last stood with you in a dressing room at the hospital and made Sam take pictures of you. Four years since Dr. Yoga Surgeon and Dr. Serious Surgeon chopped you, plopped you in a petri dish, and sent you out with the hospital trash. Four years since you had your last moments, since you sacrificed your life on my body so I could keep living.
I don’t have much to say Left Breast.
We wrote a song about you.
I miss you and even though Dr. Yoga Surgeon did a very superb job of matching you, you don’t match exactly.
Your buddy, Right Breast, got to breastfeed baby Mica for nine months. We missed you terribly when my poor raw nipple really needed a break, but we got through it.
I’m still proud of you, Left Breast. I miss you. Like, a lot. My back and side and fake boob are numb- they are not full of feeling like you were. Amazingly, the scars are nearly invisible. They’ve faded back into me.
The implant is hard and tight, and I can always feel the tightness. I don’t think about you, or the cancer very often, but there’s always a sense about your presence in my body. The implant is underneath my muscle, so whenever I flex my pectoral it gets all bunched up and wrinkly, and I don’t like that very much. It doesn’t jiggle or move, and when I lay flat on my back it stays in the same sloped position it is in when I’m standing up.
I’m very alive, and I have three beautiful children, and we’re back in California where we always wanted to be.
But really, all I’ve got to say, Left Breast, is that I’m still here. I’m listening to my heart more now, and I think you’d be proud. Thank you for taking the cancer away. Thank you for helping me survive. See you on the other side. Here's some pictures to show you how far we've come.
Purpose is everywhere lately. Purpose, purpose, purpose. Follow your heart.
Chelsey is a digital storyteller, geek, mama, researcher and yogi. She loves to make things and her favorite food is artichokes.