Hot Cheeks and Other Lessons on Listening to our Bodies

You know how you know when you’re embarrassed, because the heat rises up through your body and spreads out into two rosy red circles on your cheeks, and you know instantly, this feeling of horror at what you just did, this wish that you could go back in time and do it right— that moment that caused the heat to rise up your belly and into your throat and to spread out into two rosy red circle on your cheeks, circles that feel like they are on fire?

That is your body’s way of telling you, “Hey, dude, you’re embarrassed.” We rely on our bodies for signals, body cues about how we are feeling, when we are feeling, what we are feeling. Our minds and souls rely on us to listen to our body cues, heed them, care about them.

So imagine this: Sitting at the dinner table alone, finishing up grades with a cup of lemon tea and the evening sunlight dancing in the window.

….when, on cue, your body screams to you: YOU ARE EMBARRASSED. Red cheeks, flooded with heat. Except you’re not. You are all alone, grading student work. You might be bored or tired or frustrated, but certainly not embarrassed. Except you are. You take a minute to try and figure out where the sudden embarrassment came from. But you’re persistently not embarrassed. But there’s your body, telling you, screaming to you, embarrassment.

Is it a hot flash? The new hormone therapy I am on, the one that involves inducing false menopause? It can cause hot flashes. Immediately I send text messages out into the ethers, because I know the young adult cancer community will know. They’ve always known- they knew about neuropathy and constipation, they knew about social isolation and how to hide surgical drains, they knew about fear of dying and chemotherapy ports and feeling like no one understood. They knew, and they would know about hot flashes, too.

Beads of sweat, they respond. “Are there beads of sweat? There are always sudden, unexplained, beads of sweat during a chemopause* or false menopause** or cancer-induced menopause*** hot flash.” But my hot, embarrassed cheeks are dry. My upper lip boasts not a single droplet of sweat. What confusion, brought on by a new hormone therapy, about the signals my body is sending me, about how I am supposed to know the world, about how I make sense of the body signals that normally orient me to the world. Am I embarrassed, about something I cannot identify? Ashamed, and I don’t know of what? Is it really a hot flash, are the drugs finally putting me into false menopause, and can I really not know, do I really not know, can I really be so unsure, of what a hot flash feels like?

What a silly thing to be so onsure about, what a silly thing to not be able to identify.

But we are so unsure. So unsure of our bodies, these days. Every where I turn, at every step, I notice that I am unsure of what my body is telling me. And I notice that you are unsure of what your body is telling you, too. And I notice that collectively, we are not listening to our bodies.

I am unsure because I am medically regulated, my patterns thrown off by medications and surgeries. I am unsure because parts of me are not me at all, but plastic and silicone in my place, fooling you. I am unsure because you have told me, so often, what I am feeling even though my gut said something else, and I unsure because I followed along and I listened for so long, until I forgot how to tell if my gut was telling me something else. I am unsure because for so long, I didn’t know there was something growing in my breast, I am unsure because my own cells forgot I mattered and morphed into a deadly dis/ease. I am at a profound dis/ease, because I don’t know how to read my body.

Do you?

The other night, a four year old girl explained to me that her kobo was the bad part of her body. How could any part of her be possibly bad? Her little four year old body and soul is built of a love of running and a willingness to try even the oddest of foods- where, I wondered, was the bad hiding, lurking? Her kobo. What is that? Why do we make these words up, these words for vagina, and why do we call that part of our body- our vaginas- bad? And isn’t a Kobo a tablet on which you read books? What’s that got to do with a part of your body that can erupt in pleasure or serve your everyday peeing needs? And worse, why is it the bad part of her?

Moreover, how is she ever supposed to trust herself if the adults around her fill her mind with ideas about her vagina being bad? What if they can’t even call it a vagina at all, and they call it a kobo, and a kobo is an e-reader? I suppose if we are going to re-name a vagina, I would be on board with naming it after a digital tool used exclusively for reading and knowledge-seeking, but really? A kobo?

But you know, the name isn’t so concerning to me. Of course, I will tell our daughters they have vaginas with clitorises and labia, and we will never call their vaginas kobos. But I think we are in the minority. Critically, is this little girl learning not to name herself, not to trust herself, not to pay heed to her body, her body signals, the knowledge deep inside her flesh? How will she know how to read her body signals, and especially, the ones coming from her vagina (err, kobo) if all we ever tell her is that her kobo is the bad part of her?

And then this little girl grows up, and she’s on the brink of knowing what her gut is telling her, of being able to know from deep inside her soul that she is enough- what if she’s on the brink of being able to be herself— and then she remembers, that there is a bad part of her? A part that shouldn’t be trusted? What if she ignores the pain and the pleasure, the hope and the embarrassment? What if she ignores signals from her vagina about sex, because someone told her that was a bad part of her? What if she ignores signals of illness, coming from her vagina? What if she ignores the signals her brain receives from her body, the signals that show her how to interface with the world?

These are devastating what-ifs. Devastating.

I think it’s time we listen to our bodies.

But sometimes I think we forgot how. I think we forgot, because people called our vaginas kobos instead of showing us how to navigate the feelings from them. I think we forgot, because people told us who and what we loved, instead of inquiring after our hearts. I think we forgot, because we got caught up in the rush of life, in the need to build bigger and better and fancier homes and facades and vacations, instead of listening silent, to that tiny inside voice, the one that is so easily drowned out by the world. I think we forgot, because they taught us to use our minds, to rationalize, to think ourselves outside of situations because being emotional or being in your body is being not smart enough. I think we forgot, because our bodies are so hopelessly tied up in all this social forgetting, so hopelessly affected by the toxins we threw into the world when we forgot, so hopelessly knotted together with our carelessness about the world and about the communities living next door to us and about the people sharing our food and about the air we breathe.

I think I forgot. I forgot to listen to my body.

I listened once, and it saved my life. I listened when I knew I had cancer, and no one believed me.

I had to listen again, to my body, when I was on the brink of mastectomy. I had to listen because for the first time, it became crystal clear to me that no one had the answers, that your opinions had no weight, that I couldn’t try to please anyone this time, because for the first time, a decision lay in front of me that only I could make, a decision lay in front of me for which only I could be accountable.

And I had to listen to my body. I had to learn again, how to listen to my body. Because I forgot.

It’s time to learn again, to learn in the everyday, to learn in the mundane, how to listen to my body. Not in the OHMYGOD I HAVE A PROFOUND DIS/EASE THAT COULD KILL ME AND YOU ARE NOT PAYING ATTENTION kind of way. It’s time to listen to my body in the I have to decide what to have for lunch kind of way, and the I need to figure out what courses I want to teach kind of way, and the I have to know what to name the babies kind of way, and the I need to decide how to handle these complicated relationships in my life kind of way. I forgot before, how to listen to my body. It’s time now, to listen up. To pay mind. To learn. To know, from deep inside. Not to theorize, but to know from my gut, even when I want nothing more but to dance in theoretical knowledge and abstract ideas. To listen to my body, even when books and articles and scholarly exchange are easier, comforting, intelligible. To listen to my body, a body no one else can know from. It is time.

It’s time now, to listen to our bodies. Our lives depend on it. Our world relies on it. It is our today, and it will make our future.

*Chemotherapy routinely causes amenoreah. Most refer to it as “chemopause” as it is often associated with menopause symptoms like lowered sex drive, weigh gain, and hot flashes. Sometimes chemopause associated with higher survival rates.

**False menopause is when the doctors trick your body into halting the production of estrogen, so that they can administer anti-cancer medication that they think will keep your cancer at bay. It involves menopause-like symptoms like lowered sex drive, weight gain, and hot flashes. The think that once they stop inducing false menopause, my body should go back to normal. In my case, they are trying to induce false menopause by means of a monthly pellet inserted into my stomach fat. My doctor has warned me against looking at the shot she gives me, the one loaded with the pellet, because in her words, “its too big for you to feel OK about this after you see it.”

***Cancer-induced menopause is when some part of cancer treatment- be it chemotherapy, surgically removing the ovaries, or hormone therapy (or something else) causes permanent, irreversible menopause in a woman too early to be experiencing such body changes. Sometimes it happens decades and decades before it should have.

#homesick

I was just home, home in the Bay Area. Home laughing with the people who’ve known me for decades and more. Home soaking in the heat, home barefoot on the cold tile floor, home worried about sunburning my nose because it’s April and that means its spring and in spring you’re supposed to need sunscreen. 

I miss this place. I miss driving through the Caldecott, and knowing the Bay will be framed on the other side by the Golden Gate and the mountains, and the city will be winking in the distance. I miss those flowers that look like bottle brush cleaners, the red ones, growing in bushes over the freeway. I miss the word freeway. No highways in these parts. I miss these dry hills, I miss the dirt that covers the bottoms of my feet, I miss the pavement hot from the sun, I miss the friends who know me so well.

I miss these people. I miss their everyday. I miss knowing she has a stack of Sunshine magazines and that she arranges her throw pillows on her bed like they do in bedding stores, all angular and one in front of the other. I miss knowing her daughter wears purple pajamas and that her back door is always unlocked and that she makes moon flags. I miss the adult friendship we are only barely beginning, the one built on years of childhood spy games and made up languages. I miss these in-between moments, the ones no one remembers, the ones that fall between the cracks of memory, the ones that are our every day. I miss hearing about and being witness to the incremental movements that add up to her dreams.

I miss real connection with these people. Not over the phone connection, not Facebook messenger connection, not they read my blog so they know I’m panicking about something random and they text me connection. Real connection- arms wrapped around waists, laughter coming from belly, tears filling eyes, heart to heart connection. My friends are struggling, some of them. They are trying to figure out how to live, and together, we talk deeply and from our hearts, and it is real. My friends are waiting, glass of wine in hand and so many years of life to share, so many stories to tell between the two of us, like little bursts of magic each time something new is shared, laughed over, cried about, told again and anew, between the two of us. My friends are holding healing circles in their living rooms and making moon calendar journals and lighting candles to listen to each other deep into the night— and they welcome me with open arms, they listen with their hands on mine, they take me right back into the fold of the friendship that was once our everyday.

Because you know, none of us know. We don’t know how long we have to live on this earth. We could die tomorrow. I won’t buy into that saying, “live like you’ll die tomorrow,” because that’s total bullshit: if you thought you’d die tomorrow, trust me, you’d be crying at home and quaking in fear- there wouldn’t be sky diving or surfing or epic parties. Rather, I want to live like I’m alive, like I love, like I can freely and hopefully count on tomorrow. I want to live like I can count on tomorrow, tomorrow when I move home, tomorrow when I know what color your daughters pajamas are, tomorrow when I know what kind of magazines are stacked in your bathroom and tomorrow when we keep building these friendships, this community, this hopefulness that we know today. I want to live in today, to pile all the things I love into today, and I want to know that tomorrow, I can forgive todays’ mistakes, and that tomorrow, I can make tea for the friend who didn’t make today, and that tomorrow, todays’ buds will blossom, and that tomorrow, that tomorrow will be connected, intertwined with, sewn together with, hopeful with, today.

“What’s the impetus,” she asked, “to come home? Is it the babies?”

A little. But mostly, it’s fear. It’s fear of death. It’s fear of living a life too far away, of spending counted hours without sharing magic or tea with these people who can trace my particular brand of silly back a few decades, fear of not having spent precious time with precious people. Fear of death, and fear of what I am missing in the time between now and then, especially when I don’t know (and neither do you) when then is, or how many days between now and then, or how many minutes or how many decades, between now and then. So am I running scared, running home because I’m afraid? But this is how I want to spend these minutes, these days, these decades. Not like I’ll die tomorrow, but like I don’t know how much time there is between now and death, and I love this place. I love these people. I need them close.

So soon enough, I will come home. Home to this geography. Home to these dry hills. Home to California poppies. Home to where my baby girls can look up to my friends’ bigger girls. Home to diet sodas. Home to freeways. Home to the redwoods and the ocean.  Home to dirty bare feet and swimming year round in outdoor pools. Home to friends who remember which mom smoked out the window of the carpool. Home to this deep knowing. Home to these people who have left footprints on my heart, and people who are calling back to me, come home, not because they want me close, but because they know I want to be close.

Zero F*cks Given

Zero f*cks given.

Zero.

Sternum pain, tests, negative for cancer results, disagreement, more negative for cancer test results, radio silence.

Dr. Batman Earrings doesn’t think it’s a “slam dunk.” Which means nothing because he was wearing batman earrings and he tried to shake my hand. It’s not a business deal dude. I’m wearing a blue gown. I never wear blue gowns to shake hands.

It’s not a slam dunk, because cancer in the bones doesn’t always show up on bone scans. And so we are back. Running in circles. Dr. Batman Earrings saying he’s going to do this and that. Whatever. We need to make sure it’s not cancer, he said.

I’m sure. I know. It’s my body. You caused this with your obtuse treatment. You made my sternum ache with your chemo and your numerous surgeries and your hormone therapy.

I know your chemo and your surgeries are what got me cancer free. I know your hormone therapy is keeping me alive.

But still. Why can’t you fix the pain you caused? Why can’t you come up with something better? Why can’t you talk to each other? Why does everybody disagree?

So more tests, ordered by a doctor wearing batman earrings. He’s no superhero.

Ohmygod, she said. Oh no, he said. Terrible news, they said. Worst, she murmured.

It’s not ohmygod. It’s not terrible. It’s not worst.

I’m not a tragedy. Promise.

It just is. There’s pain in my sternum. Want me to rattle off what else there is? I won’t bore you. Besides, I hate your stupid eyes filled up with puppy dog sympathy. A newly diagnosed cancer friend recently told me she didn’t want pity, but she would take presents. She’s onto something.

I mean really. It’s like whatever. I’m fine, this test is excessive, pass the advil.

To you, she who was just diagnosed.

To you, she who was just diagnosed.

First of all, I am angry. I am livid you are joining me here. I am pissed off people are telling you to be positive and hopeful. I am astounded they continue to tell you you will be OK, when really, we don’t know if you’re going to be OK and mostly, what you need is for them to acknowledge you’re in the most unstable, unknown, unpredictable, absolutely terrifying land ever.

Second of all, I love you. Sure, we haven’t spoken in years. Maybe we never even really talked much back when we shared the same space. Maybe we were besties. Maybe our lockers were near each other. Maybe we knew someone in common. I don’t care. Somehow we knew each other. Somehow, you reached out. Somehow, we connected. And I know it wasn’t easy, to reach out, to connect, to ask for help and support and love. For that impulse you had, that tiny glimmer of knowledge you had that maybe your harrowing cancer news would be a teeny tiny bit less harrowing if you reached out, for that enormous risk you took in contacting me, I am eternally thankful.  I believe this earth holds a wisdom deep inside, and I think that you accessed our earths’ wisdom when you reached out, and I am glad you did. Glad isn’t even the word. I am heartened. I am hopeful. I cannot imagine you not having connected. We need each other. We do. Badly.

I’ve learned nothing from breast cancer, but from my cancer friends, I have learned we have to stick together. Together with a young adult here and there, I made it through treatment and I’m trying to make it through the aftermath. We lost our hair together, we cried about our fertility together, we lamented being the only young ones, together. Then there were the friends who I met who could relate, because they were diagnosed before me. There was one in particular, and she was steady. She was still vulnerable and she was still pissed off but she was real, she was present and she was able to show me what could be. It was different than getting it because you were losing your hair at the same time. And it was comforting. I hope I can be like that friend who was diagnosed before me, to you who was just diagnosed. I hope I can acknowledge and never diminish the wild fear, the never ending tears, the incredible misunderstanding.

So you, she who was just diagnosed. Barely 48 hours ago, you were diagnosed.

When you messaged me on Facebook, time stopped. Goosebumps rose. Tears filled my eyes, and my blood pulsed with anger. My heart broke in a million pieces. I had an incredible urge to hold you tighter than tight, to never let you go, to keep you safe and warm inside my arms.  All I could do was call.

Your voice was heavy with fear. In each question, each comment, each admission, I heard myself. I heard my own quavering voice, asking about radiation, mastectomy, hair loss, telling family. Each time another part of the story unfolded, I remembered the familiar creases in the fabric, the familiar not knowing, the familiar grasping at anything, something, anything that made sense.

I’m so glad you messaged me.

To you who was just diagnosed, I wanted to tell you. Advocate for yourself. Preserve your fertility. Ask a million questions. Stop googling. Stop google-scholar-ing. Take the ativan they offer. Stop researching. Trust your oncologist. Call the people you know, the ones who you aren’t sure about, but who maybe had something like this. You need a tribe. Don’t be ashamed to text like mad. Call all the time. Stop googling. Hydrate. Stop researching. Hydrate. Trust your oncologist. Ask questions. Reach out to any person who looks youngish. They are your tribe. We are your tribe.

I am so sorry.

People will say crazy things. They will bring you green powders and tell you to be positive. Fuck them.

People will come out of the woodwork. They will bring you dinners and movies. Love them.

Tell whoever you want. Don’t tell the rest.

Hide under the covers. Ignore phone calls. Only eat ice cream. Watch re-runs of the worst TV shows from your childhood.

Wear cowgirl boots, if they make you feel powerful.

Tell. Don’t tell. Tell part. Don’t tell the rest. You get to decide.

Find the colours the are comforting, and build them into your life. For me, it was aqua and warm, knit blankets.

Get a naturopath, if you like. Listen to their advice, sometimes.

Watch a lot of movies. Distract yourself. Distract, distract, distract.

Color. Draw. Make friendships bracelets.

Go to yoga. Lay out of all the postures, because, chemo. Go anyway.

Crawl under the blankets and cry. Demand your doctors tell you something about their lives before you show them your tits.

It’s a decision for you, and only you, the mastectomy or lumpectomy. Trust yourself. Its a decision, only for you.

Reach out. Keep reaching out. You already did it. It’s so important. It’s so hard. Keep doing it.

It’s not positive. It’s not pink. It’s not happy. It’s cancer. You don’t have to be any of those things. Promise. Fuck them.

So to you, she who was just diagnosed. Call me. I’m here. I want to shake you and tell you, I’m here. You’re taking all the space up in my heart and I can’t stop thinking of you, so please call, and please text. Don’t not contact because you think its too much. It’s too much to have breast cancer when you’re this old. It’s too much to be the only young one. It’s too much to consider mastectomy. It’s too much when every single person tells you to be positive and it’s too much when everyone tell you you’ll be fine. It’s too much to wait for more information. It’s all so fucking much, and it’s not too much to call or text. Promise.

To who, she who was just diagnosed. I’m here. All ways, and always.

Love you.

Me.

Let’s Be Real.

OK, let’s be real. I haven’t been real about this surrogacy thing, on the blog. I’ve been real about it at the Young Adult group at Callanish, and I’ve been real with close friends on the odd walk around the sea wall or on those occasions when you’re riding your bike by your friend’s house late at night, and they happen to be home, and you have a spontaneous curb side chat and never take off your helmet. But we had to break the news before I was real. News is broken. We all know its about to be awesome in our house, with two tiny baby girls to cover in kisses. So. Let’s be real.

Two weeks ago, I sat in the waiting room. I waited. While a technician did the ultrasound of my babies on our surrogate. It felt wrong to be in the waiting room. “But that’s what the fathers do,” the secretary explained. Fuck that. I’m not the father. But I waited quietly. Forever, it seemed. Far enough that I might have been miles away, as an old Brit took measurements of my babies in someone else’s belly. Because of course, the secretary explained again, “that’s what the fathers do.” Newsflash. I’m not a father. And it does make me wonder, what about the partners that are also mothers? I’m not the father, I’m the mother. And those are my babies. And I should have been there, for the entire ultrasound. I don’t give a single sh*t about the technician doing their job, taking measurements, not needing other people in the room. They’re my babies. Mine. And I should not have been in the waiting room.

I couldn’t pull it together that day to advocate, but I knew it wasn’t right. I could feel it in the pit of my belly. It felt horribly wrong, horribly unreal, horribly impossible to wait in the waiting room while someone else had an ultrasound that to check the measurements of my babies. I just couldn’t articulate it until tonight, until someone sat across from me in that sacred space that is Callanish, and shared exactly this experience, shared exactly this anger, shared exactly this alienation, this invisibility, this impossibility. You bet I’ll be calling that facility tomorrow, to help them learn from this experience. Object lesson, for the hospital staff. But that feeling in the pit of my stomach, the one that burns with the sensation of something being terribly out of place? That feeling isn’t only one that lurks during ultrasounds. That feeling is one that has pervaded the last twenty weeks. Knowing I can pour myself a glass of wine without any concern for my babies’ developing brains and bodies is absolutely unnerving. Heartwrenching. Full of ache. It cannot feel right, because it isn’t right. They should be inside my body. My breasts should be intact. My ovaries should be functional. My body should be their safe place for growth.

That woman tonight, that other woman who has two girls by surrogacy, both born post-cancer? “I have always trusted my gut,” she explained, “but with the surrogacy, I couldn’t. There was never a gut-feeling that this was OK, because fundamentally, it wasn’t.” Of course not. How can your body send you a feeling of OK, when what should be OK in your body is so not OK it’s not in your body? Having my babies inside someone else’s body cannot make me feel, ever, OK. It can only make me feel like my babies should be inside my body, and they are not. That ache, that horribly unsettling feeling? I’m pretty certain it’s here to stay, until our little girls are in my arms, until they are mine to take care, just as they should be right now.

Right now, it seems like everyone is pregnant. Friends all around me have bellies busting through their t-shirts. They have ultra-sounds and they leave their husbands and wives in the waiting room until the technician is done with her “job” and ready to play show and tell. They order sprite instead of champagne. Sometimes they tell me how hard their pregnancies are. How awful they feel. I want to receive their words with care and comfort. I think I can hold the space with love and listening. I hope I do. I certainly try. But you know what really gets me? What really shatters me is when they tell me how lucky I am. How I wouldn’t want to feel as horribly as they do. How I shouldn’t want to be pregnant. How I’m so fortunate. It makes me feel invisible. It makes my heart ache. It makes me shut my mouth. It makes the heartache worse. It makes me defensive. It makes me scream, DO YOU KNOW I AM DOING THIS BECAUSE I HAD CANCER, AND THE HORMONES WOULD KILL ME, AND THEN THE BABIES WOULDN’T HAVE A MOTHER?

It makes me want to shut down communication. It makes me call my cancer friends in tears. It makes me rush to Callanish, and it makes the words of anger and sadness and confusion and frustration pour out by the bucket. It makes me feel like the wedge between us grows, exponentially. What I wish they would say instead, is that they have no idea what it would be like, to have their developing baby outside their body. What I wish they would say instead, is that they are listening to what I am saying, and they don’t know what to say at all. What I wish they would say instead, is that they hear me, even if they cannot relate. Tonight, the pregnant facilitator of the Young Adult group looked me in the eye and said, “I have no idea what it would feel like to have my baby outside my body.” My eyes filled not because I was sad, because I finally felt visible. Heard. Seen. She doesn’t understand, but that’s not the point. I don’t want her to understand. What I wanted from her, and what she did so gracefully, was to centre herself in her own experience- which made me visible. What I wanted from her was to hear her talk from her place of knowing, and for her to acknowledge what she could feel, and how she could know- and also, what she can’t know in her body. She didn’t tell me how I should feel, what I wasn’t missing, or how her experience should or could narrate, explain, or justify my own. And in doing so, she made space for me, too, made space for the unknown, my unknown, together next to hers. Not the same as, but next to. Listening to. Knowing with. Space for. Enough. It’s all I could ask for. It’s all I could want. It’s all I need. Not the same as, but next to. Listening to. Knowing with. Space for. Enough.

I wonder why we have such an urge to narrate each others’ experiences. To compare what is worse. To tell others how it is. To use our own experiences to provide judgements and shoulds. To educate about someone else’s experience, while only knowing from our own. Sometimes I think education itself is an inherently violent practice, and this is why- for the hurtful possibility that telling someone else how to know something, how to be, from outside that someone’s body is just so violent. It is not about sympathy. It is not about comparing. It is not about you telling me how it is for me from your vantage point. It is about listening. Silence pregnant with listening, so much listening that there’s only silence. Caring. Listening hard. Listening to our inside voices.

And my inside voice? It’s time to be the fierce advocate I know how to be. It’s time to be full of fire. I will call the hospital tomorrow, the one where our dear surrogate had her eighteen week ultrasound. It won’t make a difference for me, but it will make a difference for someone else, I hope, in the future. It’s time to be the fierce advocate I know how to be, for our baby girls. It’s time to write into the birth plan what I know we need for them, it’s time to draw boundaries and make commitments and shape futures, because I am a fierce mama. She told me so, the other young woman with babies by surrogate after cancer. She told me making those decisions, doing what I need, asking for the absolute- that’s not being a bad mother, she said. That’s just the opposite- that’s being the fierce and hopeful mother you have to be, the one you already are.