resilience

Cracks

re·sil·ience

rəˈzilyəns/

noun

1.

the physical property of a material that can return to its original shape or position after deformation that does not exceed its elastic limit.

2.

an occurrence of rebounding or springing back.

3.

the capacity to recover quickly from difficulties; toughness.

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Resilience is a big word right now. There are studies about teaching resilience and grit to children in schools. Which I think is awesome, and much more helpful to becoming a functional human than understanding geometry, or even global politics.

Facebook COO Sheryl Sandberg, whose husband died suddenly two years ago, is making the media rounds speaking about her new book and foundation, Option B, which “helps people build resilience and find meaning in the face of adversity.” I admit that there is a part of me that is resistant to the idea of a celebrity making this into a movement – giving us collective permission to grieve properly and in our own ways through our losses, and teaching the world around us how to better support us. I’ve been talking to some of my friends who have also lost young children and our conversations seem to go like this: What do you think of this? Haven’t we been going there for years now? This stuff – this really tragic, really hard, really bad stuff happens so much more than people want to know. Why does tragedy need to happen to a celebrity for it to become okay for our society to finally talk about it?

But the nagging feeling I get when I look at the Option B website is this: Do we have to make something out of our losses, our challenges, our trials? What happens if we don’t?

I think most of the time, when it happens – when we develop resilience – it’s not because we did anything. It just happens. And sometimes it doesn’t, and the hard things are just hard, and they suck, and you don’t come out the other side feeling more capable of handling anything that might come next. You are just tired and you want to shout, Enough already! This effing blows!

And that’s okay. You are not a failure if you don’t come out the other side of your awful tragedy feeling stronger, wiser, or more resilient. You are not better than with resilience than you are without. There is nothing about resilience to be proud of. Resilience doesn’t have to be the goal. In fact, there doesn’t have to be any goal when life is hard except getting through a day.

Recently I had the thought that I have earned my resilience out of all that I have suffered or struggled through or overcome. But have I really? Or did the resilience I have just develop on its own? Maybe it’s even something I came into this life already possessing.

I just don’t know that I buy the notion that what doesn’t kill us makes us stronger or more resilient. The idea that we are transformed into better people out of what we have lost, what we have grieved, what we have suffered. Because I would give up my resilience and strength and wisdom in a heartbeat if it meant that my baby didn’t die eight years ago and instead was a healthy girl about to finish third grade and celebrate her ninth birthday. Or that my parents hadn’t turned my world upside-down at age 15 when they divorced. Not to mention how quickly I would give back the autoimmune condition I have struggled to live a normal life with for 20 years.

Because living children are better than resilience. And physical health is better than the emotional strength gained from surviving an illness. And a stable family of origin is better than the wisdom I gained from being independent and responsible beyond my years as a teenager. All those hours in therapy and doctor’s offices and the neonatal intensive care unit took a lot of time, energy and money I would joyfully have spent otherwise. Like on a beach in Hawaii.

I get it: The human search for meaning, especially building meaning out of adversity. It’s what keeps us moving forward. It helps us to rebuild. Otherwise nothing makes sense, and it all feels like a big cruel joke.

But what if we can let it be okay to just live through adversity and arrive at the other side cracked, or even completely broken? What if we don’t have to overcome or become stronger, but just figure out a way to put one foot in front of the other and wake up each day feeling a little less shitty than the day before? What if there will always be a part of you that is keeping an eye over your shoulder for the next unexpected kick in the back of the head?

This is the thing: I don’t think we bounce back out of adversity to how we were before. Adversity changes us completely, forever. Even in our cells, our DNA. (see: epigenetics)

I think the idea of rebounding or springing back – which is often part of conversations about resilience – can be a setup for feeling 100% like a failure, even if you do manage to come out the other side a little stronger. You don’t bounce back because there is no back to go back to. You just do your best to move forward, maybe evolve a little, maybe transform a little – or maybe you just find yourself in unfamiliar surroundings, hardly able to recognize yourself, but accepting your changed self anyway. Because that’s your only option.

That kind of acceptance can require an enormous amount of forgiveness. Towards ourselves, mostly.

Maybe – not even by doing anything intentional – you even exceed your elastic limit, and you become bigger. Not better, just more expansive. Because we aren’t static. Even when we feel like shit, part of that feeling comes from knowing that there is something that feels just a little bit better. Even if we don’t exactly know how we might get there, or if we even want to.

After I lost my baby daughter, people would say things to me like,

I just don’t know that I could survive what you’ve survived.

And also:

You’ve been through so much.

With all you’ve been through, how are you as grounded and balanced (as you seem to be; meaning: How are you not a bitter, angry mess?)

You’re so strong. (Meaning: From now on, this is how we expect you to be.)

You’re so wise. (Really?)

And I would reply, But you would survive. Because you just do. Because you aren’t given any other choice.

I’ve surprised myself with what I can survive. People around me surprise me constantly, too. Friends and family battling cancer. My refugee clients at work. Everyone I know who lives with a chronic illness. I just don’t know that surviving is any great feat. It’s just what we do when shit happens.

I don’t get knocked down easily anymore.

I have survived “the worst” already, but I also know that doesn’t mean there definitely isn’t any more “worst” to come.

I know that I can handle what life is going to dish out next.

Maybe partly because of resilience, because of strength, because of wisdom.

But mostly because I just know I have to.

Perhaps that’s all resilience is. One step in front of the other. Forgiveness. And being really, really gentle with ourselves and each other.

Because life is hard, and it can be good too. That much I believe.

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let’s talk about trauma

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trauma: 1. an emotional wound or shock often having long-lasting effects. 2. any physical damage to the body caused by violence or accident or fracture etc.

Big, powerful word. It summons up thoughts of war, genocide, violence. Veterans who come home with the invisible wounds of PTSD after having fought in wars. It makes me think about my grandparents who were Holocaust survivors and what they carried deep inside them from what they had lived, from all they had lost. It makes me think about friends who have battled cancer, friends who have lost spouses, friends who – like me – have lost babies. It makes me think about all of the ways life can turn on its head in an instant, when we least expect it, and change us forever – change us down to our very cells.

Did you know that our cells carry our traumas?

I’ve been thinking about trauma lately, naming it, recognizing it inside myself. I’ve been looking at the trauma I still carry – even now, when I am feeling so much better – from the years I felt like such crap because of the auto-immune illness I live with. From the years I was so sick and struggling so completely to feel just a little bit better.

I have spent years – literally years – guided by my primitive/ancient/reptilian brain, living in fight-or-flight mode. I have spent years being cautious, fearful, and so completely careful about every bite of food I took, worried about how each bite would affect my body, frustrated to the point of rebellion that I couldn’t just fucking eat. I developed a superpower during these years: It’s an internal radar that allows me to find a bathroom – anywhere, anytime – within minutes if not seconds. I learned how to manage my condition in often obsessive ways that allowed me to trust my body just a little bit while taking away my ability to ever completely relax.

I developed other superpowers living as a sick person with a hidden illness: I got really, really good at managing my medical care, managing medical paperwork, getting reimbursements. I am the master of customer service calls, especially to health insurance companies. I got really good at researching EVERYTHING and taking what I had learned and the many resulting questions to my doctors. I got really good at developing supportive relationships with those doctors.

Do you see the theme, here, though? I am a fighter, a survivor. If shit hits the fan, I’m exactly the kind of person you want on your team. I fight. I’m persistent. I’m smart. I think 10 steps ahead at all times. I consider all possibilities in advance and I’m always prepared for anything.

But this is a crazy exhausting way to live. Especially when I was already feeling physically unwell. And especially now when I am feeling better.

(Do I even dare write “now that I am feeling better?” Am I really truly feeling better, for real? Can I trust that to be true?)

It’s a difficult lifestyle to unlearn because the trauma is still there – all the way down into my cells.

I was first diagnosed with this condition 19 years ago, after several years of other body challenges. I’ve had years of terrible illness and years with no symptoms at all and no need for meds. I’ve been surprised repeatedly when the symptoms returned, until eventually I came to expect they always would at some point – at least that’s what doctors tell you when you have a chronic condition. I’ve wrestled with whether or not to go on medication, felt frustrated when medication didn’t work or stopped working, and felt tremendous fear at how the medication might be hurting more than it helps.

I am so accustomed to living in a constant state of alert!-caution!-prevention!-attention! that it’s really difficult to turn off. To relax.

To trust my body. To trust that I am well.

The irony: Stress worsens my symptoms. That has always felt like a cruel joke. Just relax and you’ll feel better, I’ve been told, usually by people who are not living with an illness. I ate paleo – gluten free – grain free – vegan – raw – macrobiotic – (whatever) and healed! Try it, it will heal you too! This never helps me, just makes me feel like I’m chasing rainbows. Like I am never doing enough. And it makes me even more terrified of food. And I really enjoy food, a lot. And it’s not like I can just stop eating. Another cruel joke.

So how do we do it – how do we unlearn the fight-or-flight response once it is so familiar, so deeply ingrained in us? Is it possible to release, to heal some of the trauma, to lighten our load?

This is how I start: By writing these words. By naming it. Calling it by its name.

I think we all hold trauma in some form – big or small. I think when we keep it to ourselves, inside ourselves, we allow it to grow bigger, big enough to overwhelm us and drag us down. We are all fractured in some way, aren’t we? We are all imperfect and vulnerable. There is no shame in that. No need to hide our cracks, our scars, our wounds. Our traumas.

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And you? Is there a wound you hold that you’d like to name, to diffuse a little, even to release? How do you do it?

 

 

the myth of perfect, or: you are not alone

GalFlying

I sat down to write yesterday, laptop on a pillow on my lap, in the armchair in my office space off the kitchen. The house was quiet and the birds sang to the spring outside. It took about 3 minutes before I surrendered and let my eyes close, because that is all they wanted to do. I wasn’t completely asleep, but I wasn’t completely awake either. Catnapping with my reading glasses on, laptop now closed on its pillow, half aware of how good it felt to just rest, half aware that I should be doing more with my precious time. I dozed for about 15 minutes, then went to take a walk around the block. That will wake me up, I thought. As I walked, I wondered why I was so tired at 11 o’clock in the morning. No answer came except, Just tired, no reason. No need to figure it out.

I’m going to be 44 in a month and a half. Not much different psychologically than 43, I am still officially middle aged. But I am aware of the process of aging in a way I don’t think I have been at other times in my life. The grays in my hair and the tiny lines around my eyes are not new, but their presence is in sharper focus, consistent. Sometimes I still get pimples, which feels like a cosmic joke, my body saying, Hey, at least you’re still a little bit of an adolescent. But what’s different at almost-44 is this: I don’t really trip out about it all very much anymore, not in the way I used to.

A wise friend who is now in his mid-seventies once told me – as I bemoaned the auto-immune challenges I have lived with for 20 years – that it is an illusion to think that it’s possible to attain perfect health while occupying a physical and very human body. Think about that: There is no such thing as perfect health. Bodies are machines, and machines get old and slow down and start acting up. And some act up long before they are supposed to – like my Tikva’s fragile little body that struggled so hard simply to get enough breath; like my friends who have courageously battled cancer in their thirties and forties.

It’s liberating, though, the idea that I don’t need to get to perfection because perfection doesn’t exist. Liberating to accept that I can still feel good – even thrive – within the container of an imperfect, fragile and slightly beat down body. I look at my 11-year-old daughter and see myself at her age, before the regular beat down of life had begun and I never even thought of the state of my health because it simply was. I think of that time and realize just how lucky I am that I could take for granted what is not always guaranteed – healthy and abundant food, warm clothing, shelter, safety, community, friends, family, love. Health.

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I used to search for solutions, grasp at ways to heal from all that ailed me, ways to achieve the mysterious perfect, radiant health I was convinced everyone else around me had attained. I haven’t given up on the idea of radiance, the idea of thriving. But I’ve let go of perfect. And I no longer attach my wellbeing to a specific way of eating-being-living. I get annoyed, now, at the thousands of messages all around that promise complete healing of fill in the blank if only you eat fill in the blankavoid fill in the blank and do fill in the blank every day, because if it worked for fill in the blank it will definitely work for you and me, guaranteed. I don’t trust it anymore, not simply because I’ve tried it all, but more because the only thing that’s been consistent for me no matter what magic bullet I’ve tried is that I get neurotic and obsessive and end up feel deprived because I can’t enjoy the things I love. I used to follow a doctor and author on Facebook who wrote about hormones and health for women. Once she posted on her feed the five things to stay away from in order to feel great and be healthy. They were: sugar, caffeine, gluten, dairy and alcohol. I had to laugh because… Really? Honestly, what is the point of life if you can’t enjoy chocolate and cheese? I stopped following her feed.

I can’t help but be in awe of just how fragile we are in these temporary vessels; how incredibly miraculous it is that so much works when it works; how impossibly difficult it can be when it doesn’t; and how every single one of us – when we are truly honest with ourselves and with each other – struggles with something. There have been stories out there lately, brave coming out stories where people of all ages write about their struggles with illness, sharing on Buzzfeed or HuffPost or Salon about what they have always kept private because they thought they were the only ones struggling – because we can feel so much shame about being sick. The thing is, there is no failure in struggling in our bodies or with our emotions, and there should be no shame. Our culture is afraid terrified of death, and so we shy away from looking illness straight-on. We deny it, we chase after the illusion of perfect health – the magic cure that will bring perfection – and we feel like failures when we don’t achieve it. We keep our illnesses to ourselves, we feel alone. Until one brave young woman posts a picture of her colostomy bag on Instagram, leading hundreds of other young people to come out publicly as courageously as she did; and hopefully some of the shame dissolves and we feel less alone in our fragility. Did you see them, those posts? I couldn’t take my eyes off them – these gorgeous young people who have struggled, some since childhood, with irritable bowel disease, a lifetime of hiding their shame and their challenges with a hidden illness while they struggled to simply feel well. And did you see the incredibly badass pictures of women baring their mastectomy scars; turning society’s shame on its ass, turning it into pride, into strength?

If there’s one thing I’ve learned it’s this: The moment I have honestly and compassionately shared my own struggles with another person, I’ve let that person know that it is safe, acceptable and normal if they are struggling too. I’ve let them know that struggle is easier when you aren’t going through it alone. I’ve let them know that shame has no place where there is compassion.

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I am not an athlete. I’ve tried many things, some for extended periods of time – boxing, rock climbing, dance, pilates, yoga, resistance training, running – but I’m not someone who craves exercise and keeping at it is not where I am most disciplined. In spite of this, though, I still feel active. At 5’5″ and 118 pounds, I can lift my 28 pound son up and down the stairs with one arm, full laundry basket in the other. Don’t get me wrong. I am entirely capable of tripping myself out with plenty of I should exercise more, my legs are flabby, I should eat more leafy greens, the pimples are hormonal and I need to get my hormones in balance and eat less chocolate, I’m scared of what the medications I take might do to my body long-term, etc. etc. etc. All that goes along with the house is dirty and I need to mop, I should be writing every day instead of a few times a week, tomorrow I will be more patient when my children are whiny, I need to make more time to be outside, there’s nothing in the fridge for dinner, etc. etc. etc. I’m human and the nag of perfection still whispers in my ears too.

I try to be gentle, though – something I hear myself asking my friends on a regular basis: Are you being gentle with yourself? What did you do today that is good for you? I try to remember to praise myself for all I do, for all I am. I try to express gratitude for my health even when it feels tenuous. I thank my (flabby) legs for carrying me (and my son) up and down the stairs, for walking me around the block. I try to let myself nap in my chair if that is what my body needs, and I enjoy a cup of coffee on those mornings when my son decides to wake up and stay awake at 4:30am.

To my friends and those I don’t know who are struggling, who want nothing more than to feel better in your bodies, who are fighting for your lives, who are feeling in a deep place all the pain that is everywhere around us:

I honor you.

I honor your struggle.

I honor your wellbeing.

I honor your good days and your shitty ones.

I honor the shame you long to release.

I honor your deep desire to feel better.

I honor your perfect imperfection.

wired for love

Love is all you need

“The only map of your right life is written on your soul at its most peaceful, and the only sure compass is your heart at its most open.” ~Martha Beck

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What did you come here to do? What is that thing at the core of your being that most vividly expresses who you are?

Did you come to dance with confident abandon? Did you come to nurture others? Did you come to make the world more beautiful with your art, with your poetry, with your song?

What drives you? What pulls you? What moves you along the road of challenge and growth and expansion?

Are you driven by connection? Are you drawn to success? How do you know you have succeeded?

Are you wired for love?

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I know this about myself: Love is what guides me, it is my North Star. In everything and always. Love is at the heart of all that matters to me. I think I have always know this at my core; but at this time, in this place, I am sure.

In the weeks leading to our wedding, my husband and I were asked by a Jewish teacher, What is the one word that best describes the other person for you? My husband, in my eyes, was calm. To him, I was caring. I believe in these, believe that they are more than just a representation of what each of us needed from the other.

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Beatles music was the anthem of my childhood. I spent hours lying belly down on the shag carpet of our living room, Beatles songs playing while I looked at every detail of their vinyl album covers and followed along with the lyrics. George Harrison was my favorite, for me the most handsome Beatle. I preferred Paul’s voice to John’s, but some of John’s songs were my favorites. I could sing along to practically every song on every album with every member of my family. We always joined together on the shoop in Come Together, no matter where we were in our one-story house, where the walls were paper thin and sound traveled freely. I remember shooping together in the car on road trips when I was very little in France. I took to heart John’s reminder that love is all you need. Paul guided me to let it be when life felt heavy. Rocky Raccoon would invoke images in my mind inspired by the westerns I watched on TV with my dad. One day I might have to write a book titled, The Story of My Life in Beatles Songs, something like the Sgt. Pepper movie from 1978, which caused a short-lived crush on Peter Frampton when it played on TV in fourth grade.

In the months after my daughter Tikva died 58 days after she was born, we asked each other what should go on her headstone besides her name and the dates of her short but huge life. As the mother of a dead child, creating my daughter’s headstone was a way in which I could express my love, a way I could still mother her, call out to the universe that she will always be my child. A way of honoring the greatest lesson she taught me – I believe the most important lesson I will ever learn: how to love unconditionally.

Following our first meeting with the owner of the headstone company, sitting at an all you can eat salad bar with my husband, it was clear what those words would be:

Love is all you need.

The Beatles had played in the children’s hospital OR the day the doctors took our fragile daughter to another floor for an echocardiogram. Hey Jude, Let It Be, and All You Need Is Love, one song after another guiding the medical team. Her eyes were open so wide during that procedure as she experienced the shock of being in a place that wasn’t her small warm bed in the NICU, doctors and nurses all around her. I was afraid for her, I wanted to hold her and comfort her, put her at ease – something I couldn’t do because she was in such fragile condition most of the time and even a mama’s hug could do her harm. I had to step back against the wall and let the doctors do their job in that room.

So I stood back and listened to the music. I listened to Paul’s reminder and thought about the irony that a Jewish girl would feel such a connection to Mother Mary because of her lifelong connection to a song. I focused on love and I watched my tiny daughter in that big space, and I looked at my husband who had also been listening beside me.

Of course the Beatles are playing, my husband’s eyes told me. Of course, my eyes spoke back.

I rely on love with every fiber of my being. I rely on the love of others who have guided my way through their example and caring for almost 44 years. I rely on the love within to strengthen me during trying times. I rely on the love that I am in order to find my way forward. I try to shine love, reflect love, be love.

Sometimes I forget. Other times I remember. I know I have succeeded when I feel peaceful, trusting, connected.

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I traveled back home with my family recently to celebrate Passover with everyone. Back home is where I grew up, where my husband grew up, where our daughters were born. It’s where most of our extended families live. Back home is familiar, the place that will always hold a piece of my heart. Back home is one of the most beautiful places on earth – I will never deny that. But it’s not the place that pulls me anymore, because for me home is where I am now, where my husband and children are, where we have made our home. What pulls me now about back home is our family and those I call my framily. My people whom I’ve loved for a very long time. And the Pacific Ocean.

IMG_6144I went with my father to visit Tikva’s grave during our visit. It was a sunny spring day with only a few clouds in the blue sky and a small breeze. As is his tradition, my father read Goodnight Moon to his granddaughter, as he had during his visits to the hospital. As is my tradition, I brought a rose from the bush we planted with her placenta in the garden of our aunt and uncle. There was a golden beetle taking a walk around the base of her headstone, like the scarab that represented eternal life in the tombs of ancient Egyptian kings.

Of course.

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My father told me the most beautiful story one day when I was with him. It had been a tiring day for him, but the grandchildren playing around him – my daughter and son and niece – brought light and peace. At one point we sat down together, away from the busy-ness, and he asked, “Do you want to hear a story?” His dark eyes got incredibly clear and focused and he started. It was a love story from when he was 21 years old, on his way from Greece to Israel. It was the mid-1960s and a romantic and revolutionary time to be moving to a kibbutz in Israel. He told me about a young woman he met on the ferry who lived with a disease she’d had her whole life. He didn’t remember what exactly, but it required ongoing care and blood transfusions. He saw her just a few times after they arrived in Israel, then fell out of touch.

Listening, I marveled at the clarity in my father’s eyes, which had seemed tired earlier that day. His words came easily as he told me this long and beautiful story, more easily than they come sometimes because of the Parkinson’s he courageously lives with. I wondered why this experience had come back to him then, 50 years later. He spoke about this woman, this young love, as if with some regret that he had not done more to love her for a longer time. I reminded him that he didn’t know then what he knows now, that he was only 21 years old, barely out of his teens. There was such compassion in his telling, as if now he understood what it is like to live with a disease.

I love my father more than the world. I always have. Without knowing it, he created for me from very early on my idea of the perfect man. Loyal and nurturing and dedicated and worldly and smart and soulful and handsome, so very handsome. He introduced me to westerns and science fiction, taught me history and politics and multiplication tables, brought me with him on planes to Europe, hung a basketball net above the garage for me to play with, brought me Playmobil and Legos and Kinder eggs from Europe on his business trips, took us to get donuts and sit on the roof of the car to watch fireworks on the Fourth of July, took me on a bike ride around town to teach me how to navigate using a map, helped me buy my first car. After my mother left him alone with two daughters when he was about my age, he did everything in his power to keep our lives stable. My father helped teach me what it means to love.

It’s not easy to watch your parents age. It’s hard to do so without being hit with the thought that one day they will be gone. I know many who have already lost parents. During our visit back home, my husband pointed out to the extended family how much was the same as when he was a child, except that now we fill the shoes of our parents, and they fill the shoes of their parents, and the kids… well, they are the new generation who get to be the kids. The constant throughout time is the gaggle of cousins – this time ages two to eleven – playing together and chasing each other around the house; good and abundant food; and love.

It’s the love that is eternal.

all the things that are out of my hands

When I was a child in France, the remedy for all minor scrapes and cuts was mercurochrome. The liquid, applied with a little brush like on a nail polish bottle, would leave my knee or finger candy apple red with a golden metallic sheen, and it would stop the bleeding almost immediately. It was in the medicine cabinet of every home and you could usually see mercurochrome red spots on the bodies of at least a few kids at school each day. Mercurochrome is no longer sold in the U.S., France or Germany because it contains mercury (thus the name). I didn’t know this until recently, when I looked it up to see why I’d never encountered it in the 11 years I have been a parent.

Mercury? Really? I was an active kid and I got a lot of scrapes. I vividly remember watching the bleeding stop as the mercurochrome dried on my knee. That’s at least seven years (possibly longer, as I’m pretty sure a bottle of mercurochrome made its way with the rest of our belongings when we moved from France to the U.S.) of mercury regularly making its way into my bloodstream through open cuts. Great.

I’ve never had a desire to have my levels of heavy metals measured. To be honest, I’m pretty sure I’m walking around with heavy metals in my body just as most of us are. Lead from the old paint in that gorgeous Victorian I lived in during my mid-twenties, and the gasoline in cars when I was little; mercury from mercurochrome and dental fillings and tuna salad and sushi and probably some of the vaccines from when I was little and they hadn’t changed the formula yet to avoid thimerosal. I can only imagine what the process is to eliminate these metals from our bodies – if that is even entirely possible (I’m dubious). I got my share of cavities when I was younger and those mercury fillings hung out in my molars for decades, until I had them replaced with white fillings as they began to wear and crack during my thirties. I know that’s not a benign procedure, that dentists can only do their best to keep that mercury from getting into your system as it is being removed with a drill.

Every time I take my daughter in for a cleaning, the dentist brings up coating her very back molars with a plastic resin to prevent cavities. And each time I let him know I’m not interested – that I don’t like the thought of her slowly absorbing the chemicals in plastic without knowing the possible effects. Since it’s a relatively new thing in children’s oral hygiene, they don’t yet know what they now know about mercury fillings. So I remind my daughter to spend a few extra moments on those back teeth each time she brushes.

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When we moved to the Midwest from California in 2009, I met the head of neonatology of a major children’s hospital. We sat in his office for over an hour and I told him about Tikva, how she had been diagnosed with a congenital diaphragmatic hernia (CDH) in utero and lived for two months after she was born. CDH is less rare than many other congenital conditions, but it is less researched than it could be because few babies survive, and those that do are often too fragile to have their bodies poked and prodded any more than they need to be to support them. As I sat with the neonatologist, he told me about CDH research they were participating in with a university in Australia. The research was being done on sheep, and diaphragmatic hernia in fetuses was induced by injecting a concentrated amount of a regularly used herbicide into the amniotic fluid while the sheep were in utero.

An herbicide. A chemical that is toxic to plants and is used in gardens to destroy unwanted vegetation. Injected into the amniotic sac of a fetal sheep, it quickly induces the forming diaphragm not to form correctly, completely or at all. 

Shortly after I met the neonatologist, my husband was bemoaning the growing amount of crab grass on our front and back lawns. He wanted to spray it with some kind of weed killer and replace the crab grass with new healthy grass seed. I listened to him complain about that crab grass for the entire four years we lived in that house, but I wouldn’t let him spray. Instead, my head spun with thoughts about when my body could have unknowingly taken in enough herbicide chemicals to eventually cause my baby’s diaphragm not to form completely.

I had hoped to get a job at the children’s hospital during our time in the Midwest; give meaning to my daughter’s short life by putting my management skills to use on behalf of others like her and the medical staff who care for them. It’s probably a good thing I didn’t. Sometimes knowing too much is not helpful.

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So what do we do with all that information? What do we do with all those lists of things that are out there, all those things that are or might be bad for us, that can harm us? What do we do with the fears they bring up? Can there be a balance between fearing everything and making the best choices we can with all the things we know and the exponentially larger number of things we don’t know?

I have no idea what caused the hole in my daughter’s diaphragm. It wasn’t the shingles I had while pregnant, the doctors assured me, because by the time I got my first blister her diaphragm had already formed. Was my body not ready to grow a healthy child because I had struggled with an auto immune condition and taken medication for almost two years until my symptoms healed just before getting pregnant?

Shortly after Tikva died I read something in the book, Healing With Whole Foods, that really angered me. Among other prohibitions to ensure successful conception and healthy pregnancy, the book instructed: Do not conceive if either partner is weak or sick. That hit me like a brick on the back of my head, and I almost threw the book across the room. I have barely picked it up since, and this is why: I think it is completely arrogant to think that we have much control over any of it. I used to think that the reason my older daughter was born so healthy is because I did “everything right” while I was pregnant with her. But I was wrong. She is radiantly healthy because that is the constitution and the spirit she brought with her into this life. Would she have been born as healthy if I had been an IV drug user while carrying her? Doubtful. But beyond not ingesting knowingly addictive and harmful drugs while pregnant, beyond eating enough good food and drinking a lot of water and getting good rest – to take care of both my unborn baby and myself – I think the rest is just random luck. Nobody warned me about avoiding deli meats while pregnant, and I spent a good month of my first trimester eating turkey sandwiches daily. I ate soft cheeses daily for five weeks as we traveled through Turkey during the second half of my pregnancy. And she turned out completely fine. (And honestly, do women really avoid sushi in Japan when they get pregnant?)

A babylost friend I met shortly after Tikva died wrote about the random shitstorm of life, and how when our babies died we were caught right in the eye of the storm. I know, now, what an incredible random miracle it is when everything goes “right” and a baby is born healthy and easily. I know more about the thousands of ways babies can die than I wish I knew, and yet there is something freeing in that: Because I am not in control. I know that for every one danger I can try to protect my children from, there are ten I cannot even imagine or predict.

I hope more than anything that my children always remain as healthy and strong as they are now. I hope they will thrive free of illness and challenges. I hope tragedy stays far away from them and those they love, and I know that about 99% of that is not in my hands. I will continue to feed them well, good and healthy food, teaching them healthy habits that I hope they will embrace as adults. I will make sure they wear a helmet when they ride a bike. I will take them for their pediatrician and dental checkups regularly. I will sign them up for softball and soccer and (gulp) even football. I will kiss their booboos and hug them when they fall, carry bandaids in my purse at all times, bring home popsicles when they get sick. I will give them their vitamins and, if they need fillings, get the white ones. I will teach them self-care and self-love. And I will love them unconditionally.

Beyond that? I’m not so sure any of the rest is in my control. And to be honest, I find that liberating. Something about knowing I am doing my best as a mother, as a human being, and that is enough.

seventy-five percent: on nourishment and fear

Nourish

Image source: Nourish Raleigh

Do you like kale? I mean really truly love it? Kale is one of those foods that has two staunchly opposing camps – the kale camp and the anti-kale camp – I have yet to meet someone who is neutral about kale, who could take it or leave it. You either love it or you can’t stand even the thought of it. I’m in the kale camp, but not because I totally and completely adore the taste and texture of kale in my mouth, or its bitter flavor before I drench it in salt, pepper and lemon and saute it in coconut oil. What I like about it is the color and what that dark green (or purple) tells me: I am really good for you. If it’s cooked well, I can even enjoy the chewy grittiness of it. I like the sensation of literally chewing on and swallowing iron and the other nutrients that come in dark leafy greens. And I love kale chips for the salt and pepper and crunch they are vehicles for. But would I eat as much kale if it had the nutritional value of iceberg lettuce? If the experience didn’t come with a message of nourishment? I’m not so sure.

This is the thing, though. I read recently that eating raw kale is not good for you. Raw kale can inhibit the uptake of iodine needed by the thyroid gland, which can lead to hypothyroidism. And it is high in oxalic acid, which binds with minerals in the body and makes them crystalize. These crystals can damage tissues and cause inflammation. So it’s best to cook your kale before eating it.

Okay, I can do that.

But I wonder what the raw food people would say to that. What does that mean for all those amazing “massaged kale” salad recipes out there? What does it mean for the big world of green juices and smoothies? Seems like it is impossible to win if all of a sudden a leafy green vegetable, which even my children’s mainstream pediatrician promotes, is suspect. This is the thing, and the reason I’m thinking about kale at eight o’clock in the morning:

There is always going to be something out there that’s not good for us. 

There will always be a hundred different theories about whether that thing is really bad for us, good for us or benign, and another hundred theories about why. Back in the early eighties when tofu was relatively new to the American grocery scene, pre-Whole Foods when it wasn’t in every store and instead a rare ingredient found in Asian restaurants, it became the new greatest thing, the healthier option to replace meat. At the small health food store in our town, you could find soy products in a hundred forms, but no meat. It was around the advent of soy in our home that the fried steaks and breaded filets of sole my French mom was so good at cooking disappeared and were replaced by spanakopita that was made with ground tofu instead of ricotta, and whole wheat crust instead of filo dough. I actually liked it, though it was definitely not true spanakopita like my Sephardic grandmother made.

But we know now that all that soy is actually not good for you because of the way soy mimics estrogen hormones and confuses the body. The paleo camp has soy at the top of its do not eat list for this and a dozen other reasons, and the paleo diet has in its presentation and coolness factor replaced vegetarianism and veganism as the new hot health trend. In the same way that all the “healthy people” in Hollywood used to be vegetarians, now they are paleo. Please rest assured I am pointing this out for its irony, not because I believe there is any one way for all people to be healthy. I’ve done the paleo thing and I like it for the most part, but for me it’s too much meat – I’m a 3-4 times a week carnivore, not 3-4 times a day. And I actually feel better when I eat some grains on a daily basis. And I love dairy and the goat milk yogurt I make myself is one of the most nourishing things I love most in the world, filled with good, fresh probiotics. And this: I’m not convinced that just because we’ve only been eating grains and dairy as a species for 10,000 years and before that we ate just meat, vegetables and fruits, nuts and seeds for millions of years… well, I’m not convinced that 10,000 years isn’t enough time for our bodies to adjust to consuming grains and dairy. But mostly this: I am incredibly resistant to the idea that ALL OF A PARTICULAR THING IS TOTALLY AND COMPLETELY BAD FOR ME. (Except maybe a Twinkie, but there is a big difference between a fluffy yellow thing filled with white stuff of dubious origin with a half-life of a million years and a bowl of homemade yogurt.)

It makes me want to say, Prove it! Prove it for MY body. Prove it beyond a shadow of a doubt that YOUR way will bring me complete healing and consistently radiant health. Forever.

It’s hard to keep up, and I can assure you that I have tried. But not toward a blind goal of generally wanting to feel “better” or do the “right” thing, but to address an auto immune condition in my gut that has been an on-and-off challenge for 20 years. People will ask me, Oh, you’re not eating that, is it because you’re gluten free? To which I once replied, Sort of, about 90 percent of the time. I think it helps, but I’m not 100 percent sure. It’s been literally years since I’ve eaten a sandwich so I’m not sure what would happen if I did. A sandwich. Years. The food I pretty much lived on for the entire 17 years of elementary school (when I wasn’t sent to school with a slice of tofu spanakopita), middle school and high school, and much of college – though by then I had become a vegetarian and incorporated bagels, burritos and pizza to my healthy collegiate diet.

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At some point early in our marriage, probably around the time we had our first child, my husband and I incorporated what we call The 75% Rule. Mostly it applies to what we eat, what we clean our house with, what we clean our bodies with. It also applies to how we parent and to bigger life decisions. I think it’s a very kind and gentle approach to ourselves – guided by the idea that perfection is a trap, an endless black hole that has no end, and if we can aim for doing our best 75 percent of the time, that’s pretty great.

So it means we don’t go into debt buying the $4.00/dozen grass-fed eggs at the farmers market – because even though they are really beautiful and delicious and I wish they were in the budget, our children’s 529 college savings account takes priority. It means we make sure our meat is free of added hormones and antibiotics and splurge on the local, grass-fed stuff once in a while, and we don’t eat meat every day. It means we get some of our fruits and vegetables organic – in particular the ones that are at the top of the eat only organic list – and others non-organic, again because I prefer this to credit card debt of any kind. It means the products we clean our house with are natural, except for the bottle of bleach we keep in the cabinet for unexpected totally gross messes like the dead squirrel one of our cats dragged into the basement last week. It means we don’t spray our lawn with pesticides or chemical fertilizers but will do a non-toxic spray against mosquitoes before they return in the spring. It means we keep a frozen pizza in the freezer for babysitter nights. It means there is always chocolate in the pantry because if any camp believes chocolate is bad for me, I don’t want to know.

It means we do our best without making ourselves crazy, because I know from years of experience that making myself crazy is the #1 worst possible thing for my auto immune condition. Not to mention crazy is not good for my self-esteem or my sanity, and I value my self-esteem and sanity a great deal.

There is always going to be something out there that’s not good for us.

We can spend our lives chasing after the next great thing, the surefire solution to all of our physical ailments or challenges. We can feel constantly like we are never doing enough. And the Enough Trap is in close collaboration with the Perfection Trap in conspiring against us.

Or we can do our best, follow the good feeling that leaves room for the enjoyment of all that is out there, and remember that anything we fear – even if it’s organic, grass-fed, homemade, artisanal, all-natural – as long as we fear it, it will not nourish us. I probably would be fine if I had a sandwich like the kind I used to eat back in high school – roast beef on a French roll with tomato and mayo. I probably would love it, too. Especially with really good bread and really good roast beef and a juicy organic tomato. As long as I could let myself enjoy it fearlessly, just for the purely delicious experience of savoring something good. I’m pretty sure it would taste better than a bowl of kale.

immune, or how i made friends with my monsters

I’ve been kind of obsessively reading a book the past few weeks called On Immunity by Eula Biss. I’ve read it with a yellow highlighter in hand, marking passages that make me think, that make me go, “Mmm hmm, I’ve been there. I know that thought. I know that fear.” It didn’t take me long to realize that her writing – which is philosophical and poetic more than it is medical, in spite of her topic – was familiar. I had read and scanned and saved an article she’d written in January 2013 called Sentimental Medicine, which was published in Harper’s Magazine. It was this article that grew into her book.

When I finished the book I read an interview with the author in which she explained that she hadn’t set out to write a book or even a published essay about vaccination. She had started writing about it for herself, to sort out her own thoughts about it all. I get that, too. That’s why the book was so fascinating to me, because of my own journey around this in the last 12 years. When I was a child, I wanted to be a psychologist, and perhaps I should have listened to that call. I am fascinated by the human process, and in my personal psych lab I am my own favorite study. I read the book because I wanted to better understand my own personal journey around vaccination; because I am fascinated by the process that led me to do a 180 around the question of whether and when to vaccinate my children.

Disclaimer: I’m not writing this to preach. I’m not writing this to change anyone’s mind. My intention is not to tell anyone what to do. I’m writing only about my own journey here. And I understand how deeply personal a choice this is, even while I now understand how deeply public a choice it also is.

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When I was pregnant with my first daughter 12 years ago, whether or not we would immunize her was a hot topic. I read everything I could get my hands on at the time, talked about it with our midwives, talked about it with fellow pregnant friends. I lived in the San Francisco Bay Area, and if you’ve ever lived in the Bay Area you know that there are ways of thinking that aren’t questioned in a way they would be if you left the Bay Area – which I did four years later. Especially around all things related to motherhood and children – birth, breastfeeding, vaccination, nutrition, education.

It was easy to feel inadequate amid the collective messages that circled around me at the time; in fact, it didn’t take long for me to feel like no matter how hard I tried, I was doomed to fail at being the perfect parent and raising a radiant, thriving child. The homebirth collective I was a part of held an “immunization panel” to discuss the issue, where parents could ask questions of practitioners on both sides of the “to immunize or not to immunize” question. When I remember it now, I’m not so sure the panel really did include all ends of the spectrum. But I really believed, at the time, that I had done my homework. Before our daughter was even born, I spoke with her pediatrician – who after practicing for over 35 years was no novice to children’s health – about a delayed and partial vaccine schedule for our child.

And that is what we did. For her entire first year of life, our daughter wasn’t vaccinated. I wanted her pristine immune system to have a chance to build up on its own, without being bombarded with viruses and chemicals. I breastfed her and understood that this would keep her safe. She wasn’t in daycare during that time so she wouldn’t be prone to all of those germs. Her pediatrician explained that an adult with whooping cough might just have a cough, whereas a baby with it could stop breathing, so to keep her away from anyone coughing, even at the grocery store. I could do that.

When she turned one, a magical number I’d decided was enough time for her immune system to be strong enough, I took her to get her first shot. On her immunization record, it says that shot was for HIB, which I remember her doctor said was very dangerous for a young child. A month later she got her first polio shot, and five months after that she got her first dose of DTaP, except I asked for the version that did not contain the P for whooping cough. My understanding was that she was past the point when pertussis could make her airways shut down; she couldn’t die if she got whooping cough and I was more terrified of what I’d read and heard was in that part of the vaccine and what it could do to permanently damage her body. I can’t remember anymore what terrified me so.

It took the next 9 years to get my daughter caught up on all of her immunizations. At 11 years old she still hates needles, and since I wanted her to get no more than one or two vaccines per visit, that was a lot of needles and a lot of visits and a lot of trips to frozen yogurt afterwards.

What changed? I can’t say exactly, but a few things happened. First, we moved from the Bay Area and landed abroad and then in the Midwest for several years, and the messages around us changed. While we were abroad, I got very sick with shingles and my then three year old daughter kept wanting to touch my blisters, which could give her chickenpox. I couldn’t imagine caring for a child sick with chickenpox while I myself was so miserable with fiery blisters on my chest, back and arm. So I got in a cab and rode to the other side of town to pick up what seemed like the last remaining chickenpox vaccine in the city, and then took my daughter to the American doctor to get the vaccine put into her system. He warned me that it would take two weeks to really build up her immunity and that she would need a second dose at some point to be even more effective.

The first time I felt let down by what I had believed about vaccines was when I got the shingles. I had had chickenpox as a baby, a full blown case, the kind that I had previously understood would provide me with much “stronger immunity” to shingles than the chickenpox vaccine ever could. Well, I know now that shingles doesn’t work that way – once the chickenpox virus is in your system from having had it, you are always at risk of getting shingles, a piece of the same virus that travels in your nerves, and it can come out when your immune system is compromised in some way, which mine was.

We left our life abroad abruptly and unexpectedly when we learned that our second daughter, who had been growing inside me for 21 weeks, had a serious and life-threatening birth defect. Our baby girl was born back in the Bay Area and lived for just two months. For her entire short life, she struggled to breathe. She lived attached to machines that helped her to breathe and tubes that administered medicine and fed her my breast milk. During the few weeks when we held hope that she might at some point be able to come home on oxygen, we talked to the doctors about whether they could vaccinate a child so fragile, and which vaccines were most important to protect her. We discussed the yearly RSV vaccine for children with fragile lungs and airways. We discussed the pneumococcal PCV and HIB vaccines. We discussed whether she could wait to get her Hep A and B shots.

What changes forever when you watch your very sick child fight for every breath, when you hold your child alive but attached to so many wires and tubes helping to support her, when you hold your child as she breathes her very last breaths and her spirit lets go of her fragile body? You take nothing for granted again when it comes to the health of your children. Nothing. And what matters changes completely. Forever.

I took so much for granted when I was pregnant with my first daughter. And for the first half of my pregnancy with my second daughter (which was actually my third pregnancy since I’d miscarried early the second time) I was also incredibly confident. Even with the shingles I had during that third pregnancy, a few months before the ultrasound that revealed her birth defect. I remember rebelling against using the word “defect,” instead referring to it as a birth “anomaly.” With time, I’m no longer attached in that way; they’re just words, really.

When we made our decisions about vaccines the first time, I hadn’t seen what my daughter’s pediatrician had seen in the clinics overseas where she had volunteered and in the U.S. hospitals where she had worked. I hadn’t yet spent 58 days in the NICU, praying over my child that the fluid in her lungs wouldn’t become full blown pneumonia. I hadn’t seen all of the other sick babies around her. I hadn’t yet heard from other bereaved parents about all the ways babies can die. It was all abstract. My child couldn’t die from measles. My mom had had measles and she was just fine…

After our baby died and we had moved to the Midwest, our new pediatrician was a heavy pusher of vaccination. She was not green either, she’d been practicing for over 20 years and she understood public health. She was as concerned about the community at large as she was about my daughter and her other young patients. “You can go blind from measles,” she explained. At first it irritated me, and I clung to my long-held beliefs about not wanting to bombard my robustly healthy five year old with a bunch of shots filled with preservatives, many for diseases that didn’t even exist anymore, at least not in the U.S. I didn’t want to sell my Bay Area-raised soul just because I was living in the Midwest, where so many less people seemed to question vaccination.

But something happened over time: I forgot why I had felt the way I’d felt when my daughter was born. I couldn’t explain to her doctor or to other moms why vaccines were so dangerous. In a way, my fear of immunization began to dissolve, perhaps because of all I’d seen in the NICU. Perhaps because I no longer trusted that nothing could harm my child if only I did all the right things to strengthen her immune system.

Over time, I started hearing our new pediatrician differently, trusting that she had my child’s – and all children’s – health at heart. We continued to get her caught up on her shots. My only holdout was the flu shot. I still believed that for my healthy daughter, and for our healthy family, the flu wasn’t a danger. We all took our vitamin D and fish oil and ate well and washed our hands. The viruses our daughter got about once a year, whether they were the flu or something else, meant a lot of movies while she lay on the couch drinking Gatorade and sucking on popsicles; they would strengthen her body to protect her from worse things.

Then I read Biss’s piece in Harper’s and for the first time, I understood how herd immunity works. And that is the piece that tipped the balance in how I felt. There is a line somewhere in the article – and in her book where these pieces of the article appear – where she explains that for many years it worked for some people not to be immunized because of the herd immunity provided by all those around them who are vaccinated. I was reading the article at work while I ate my lunch, and I froze. A voice in my head – my own voice from years before when my first daughter was just a baby – said, “We don’t need to vaccinate her. She’s safe even without her shots because everyone around her is vaccinated.” I actually said that, several times, to several people. Friends said the same thing to me about their unvaccinated children. We had that luxury – we could count on herd immunity to protect our unvaccinated children from illnesses.

I didn’t think about others. I didn’t think about children like my second daughter, who are too sick to be vaccinated but who need more than anyone to be protected from illness, how herd immunity protects them. I didn’t think about old people, those who could die even from the flu. I didn’t think about how herd immunity protects pregnant women and their babies. I didn’t understand then – as I was now understanding for the first time – how my vaccinating my child meant contributing to the protection of not just my community but the larger community of our entire world.

I copied the article and gave it to my husband to read. I think he was relieved. I shared it with a few friends, not because I felt the need to convert anyone to my new realization but because I needed to process what I had just understood with people I trusted. I can’t say exactly why the idea of protecting others all of a sudden hit me in a way it hadn’t before – I have always been a sensitive and empathic person – but it did. Hearing myself all those years before taking for granted that my unvaccinated child could remain protected without my having to vaccinated her… well, that got me.

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“One of the mercies of immunity produced by vaccination is that a small number of people can forgo vaccination without putting themselves or others at greatly increased risk. But the exact number of people this might be – the threshold at which herd immunity is lost and the risk of disease rises dramatically for both the vaccinated and the unvaccinated – varies depending on the disease and the vaccine and the population in question. We know the threshold, in many cases, only after we’ve exceeded it. And so this puts the conscientious objector in the precarious position of potentially contributing to an epidemic.” – On Immunity, Eula Biss

Measles is back in California. That makes me wonder if I would have trusted the herd immunity around me quite so cavalierly if this had been the scenario when I was pregnant for the first time.

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“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”Illness as Metaphor, Susan Sontag

I live with an auto immune condition that requires me to be on immunosuppressant medication. That means that I have joined the ranks of those with fragile immune systems – babies, elders, pregnant women. I am more susceptible to viruses than others. I can get more sick than others. Thankfully, this has not played out in horrible ways, and I do a lot to support my health and immunity. But it is always something I am aware of and health is not something I take for granted. This year we all got flu shots, including my strong-as-an-ox husband because his work takes him to hospitals and nursing homes and places where people are vulnerable.

My son came to us through adoption, and there is so much we don’t know about his biological family’s health history. He is almost two years old and he has had almost all of his shots according to schedule. The only one I requested delaying, because he was born early and weighed less than 4 pounds at birth, is Hep B, but he had that shot within his first year. Like my biological daughter, he is robustly healthy.

My daughter is all caught up on her shots, too, and next month at her annual physical she will get some of her boosters and one vaccine that didn’t exist when I was her age, HPV. A vaccine that can help prevent the only thing known to cause cervical cancer? To me, that one is a no-brainer. I am not naive about this. I still read everything I can get my hands on about immunizations and so many other things related to health. I read them critically and I ask a lot of questions. I read medical journals and philosophical pieces like Biss’s book, which questions the origins of our fears and mistrust about all things medical and “foreign.”

And lately, I’ve been questioning a lot of my own fears. Because I don’t have the luxury anymore of taking medicine for granted; medicine, that imperfect system, has helped me. I have an ongoing relationship with my doctor and each year I am the only one in our family who meets my health insurance out-of-pocket maximum. I recognize my need for the medical system, however much I would love to not come anywhere close to that limit each year.

Because my illness is related to my digestive system, I have spent a LOT of energy fearing what I consume. I have wished I could afford to eat only grass-fed meat, eggs, dairy, only entirely organic vegetables and fruit and grains. I have spent weeks and months trying out a paleo diet, a vegetarian diet, a grain free diet, a vegan diet. I have feared meat and I have feared soy. I have feared grains and dairy and sugar and caffeine and alcohol, even chocolate. I have feared toxins and heavy metals and chemicals and candida and leaky gut, and so many other things I can’t even remember them anymore. I have learned the hard way that detoxing and cleansing are not good for me, that they always trigger a flare of my illness.

And I have learned that this fear doesn’t serve me, that it doesn’t guide me towards healing. I am learning to nourish myself and to approach cooking and eating as an exercise in nurturing – myself and my family. As I read Biss’s book I heard myself so many times; her fears were mine, her insecurities as a mother were my own. And one more thing was mine, too: a surrender of the idea that we have any control over any of it.

We spend 9 months in a completely sterile environment, and the minute we come through the birth canal we are exposed to millions of bacteria. Google the word microbiome and you’ll understand how dependent we all are on these bacteria, which also need us to survive. And, as Biss describes, how intricately connected we are with everything that lives within and around us, including each other.

For me, that helps to take away a lot of the fear. Since I can’t protect my children or myself from EVERYTHING that is out there (and everything that is already a part of us), all I can do is my best to care for, nurture and protect our perfectly imperfect bodies.

Note: Biss refers to “how we make friends with our monsters” on page 154 of her book. This made me think about how we all carry monsters inside of us, both literally (the organisms that are a part of us and that we are a part of) and metaphorically (our fears, our insecurities), and that perhaps if we make friends with them we can see how much we need them and they need us.

momentum

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photo: Kate Inglis

For a long time now, I have lived with a chronic illness. An auto-immune condition. What doctors like to call a disease. (I am not a fan of that.) I’ve never written it down quite like that before, that I live with a chronic illness. I don’t like that I live with a chronic illness. But I do. I’m surprised – sometimes stunned – that some unfortunate life circumstances have gotten me here. But I’m here.

I’ve written this post in my head so many times, yet shied away from writing and sharing it for so many reasons. Because it’s personal. Because who wants to hear about my auto-immune challenges? Because fixating on it doesn’t help anyone. Because I am tired of talking about it and thinking about it and dealing with it. Because I live it, and isn’t that enough attention to put on it? Because WHY?

But I wonder if maybe it could help for me to share. Not just to know I’m not alone (because I do know that) but also because I can’t possibly be the only one who struggles with something physical (and often invisible) in silence. I know I’m not, I’ve been inspired and moved when I’ve read posts and articles by friends and strangers “coming out” about their illnesses and struggles. And when I have shared my own story with friends, I’ve often gotten some form of, “I can relate!” from them.

We’re all dealing with something.

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I am by nature an optimistic person. I don’t give up when things get hard; there is always a part of me that hopes to feel better, that believes I can. That believes in healing (which is a complicated word for me). Overall I feel good. Overall I feel better than I felt a few years ago. When doctors ask me if I have any of the long list of conditions their questionnaires usually ask about, my answer is always, “Except for this one thing, I’m actually doing well.”

There are two ways I can look at myself and I’ve learned which one works best for me within the cycle of chronic illness.

There’s the micro-lens approach, where I look at every single detail of my body and health through a telephoto zoom lens to see ALL of the ZILLIONS of things that are going WRONG. Primary issue: My gut isn’t happy. Then: My hair is thinning. I’m always cold because I can’t keep extra weight on and my thyroid is probably low. My hormones are for sure imbalanced because I’m in my forties. My adrenals are definitely tired from years of physical and emotional stress. My skin is getting thinner and drier. etc. etc. This approach sometimes involves internet research, which leads to panic and despair, or sometimes hope that attaches to something that I haven’t tried yet that might, just might work (but usually doesn’t).

Then there’s the macro-lens approach. This is where I step back to get the BIGGER PICTURE, looking through a very wide angle lens instead of zooming in at the details. This is what I see through this lens: I’m happy. I’m peaceful. Overall I’m feeling better than I have in a long time. I’m healthy, and I have this thing that is a challenge and that I deal with. It’s chronic but it’s not lethal. And I know for the most part how to manage it. I know how to seek out good doctors and how to work with them and advocate for myself, essentially directing my own care. I am blessed to be surrounded with abundance and love and security. I eat well and take good care of my health and the health of my family. I have access to healthy ingredients. I have access to health care.

I am safe.

Can you guess which approach works best?

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I fluctuate between feeling acceptance and feeling frustration about my physical challenges. I’m starting to get that it is possible to feel both at the same time. For me, there is a lot of peace to be found in acceptance. I don’t like feeling as though I am trapped in my body and fighting against myself. Screaming out, “No, no, no! I don’t want to live with a chronic condition! How did I get here and how can I get out of this confining box?!” Because the thing is that I can’t get out of this body, and I don’t want to. I like it here. Very much. It’s the only body I know and it is the vehicle carrying my soul this time around. And I am nowhere near done with this time around, so this is the body I get till I’m 101 and I can go peacefully in my sleep.

My husband once pointed out to me that I have a lot of momentum invested in being sick. He’s right, and at the same time, I’m not really sure how to manage my condition without investing so much momentum in it. Because it is a lot of work managing an illness: Time in doctors’ offices, time and money spent at the pharmacy, time and money getting tests, time and money getting treatments, insurance paperwork to sort through, reimbursements to make sure I get, time reading about things that could help, the energy I spend thinking about what to eat that won’t hurt more than it helps. 

Fear. Fear is a lot of work. I don’t like fear, and most of the time I don’t live in a place of fear. The one thing I can’t quite shake, though, is the fear that I might never get better. That this is as good as it gets. And I mean better in a very broad sense, which is where acceptance comes in: For years I resisted accepting that I would need to live with taking medication (possibly for the rest of my life) to manage my illness. I was determined to get better, naturally, forever. (That was a very heavy burden to carry, a very abstract and untenable goal to reach.) Then one day, after literally years of specially tailoring and limiting my life and still feeling like crap, I surrendered. I went for the big guns and I took the heavy drugs. And I started to feel better. And I had about 9 months when I felt normal again, where it was all worth it, where I forgot I had an illness at all, where I could eat normally and go on long walks with my family. The acceptance paid off and I was able to relax for the first time in years.

Then a round of antibiotics for a sinus infection set the wheels of my illness in motion again and I’ve been trying for 9 months since to calm things down again. (Or, I’ve thought, it was all just a coincidence and the antibiotics had nothing to do with it, and the medication just stopped working; which, I’ve learned, happens.) And sometimes it feels like new things are starting that are also challenging. Sometimes it feels like I can’t eat anything without paying a heavy price later on. Sometimes I feel trapped in my house and fearful of getting in my car. Sometimes I feel like I want to tattoo my forehead with, “I have an invisible illness!” so that everyone will know and I won’t have to explain why I can’t do something or eat something.

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Recently I was at a holiday party talking to a man in a wheelchair. He was in his late fifties or early sixties and had been paralyzed at age 20 following an accident. He also lived with his own auto-immune condition similar to mine, so we had experiences that were shared and others that were not. And that is what we talked about, about disabilities that are visible and those that aren’t. About planning every inch of your life to make sure you can get through a day feeling good and functioning in a way that is expected by others. About the many things “other people” just cannot understand. All these things we talked about juxtaposed with my awareness the entire time that I really wanted to get a chair so that I wouldn’t be towering over him as we spoke, but every chair in the room was taken by other guests. All these things we talked about while I was aware of how strong my legs felt as they held me and moved my body. All these things we talked about as I felt so grateful to be understood.

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I think the lesson here must be about directing the momentum in another direction, harnessing all that energy towards the shift I want to create. Following the good feelings I feel and the good feelings I want to feel and calling on the rest of me – physical, emotional and spiritual – to move ahead towards those feelings. It’s a fascinating experience, learning that I can feel good amid something that is a struggle, rather than giving in to that struggle and letting it pull me under and take over.