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.

****

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.

on cankles and self love

ClavicleExcerpt from Shrill, the amazing book everyone should read, exploring our views about fatness, by the incredible Lindy West.

Dear 15-year-old French boy I had a crush on the year I was an exchange student,

I still remember your name, I probably always will. I can almost remember your face 30 years later. You were adorable and you had a nice smile. You wore v-neck sweaters and button down shirts and nice pressed jeans like French boys did then, in the eighties. You were popular, you made your friends laugh, you made me laugh as we all sat in cafes after school and drank coffee from small cups and shared cigarettes, like French teenagers do. You and that one other guy, you were like the ring leaders, but no one seemed to mind because you made us laugh.

I doubt you remember me. I was only there for one semester, visiting your school all the way from California. The American girl who spoke fluent French because she had lived in France as a little kid. The one who wanted so much to fit in, to be as French as she possibly could be, who bought her own v-neck sweaters and smoked her first cigarette and drank coffee along with you and all your friends. It was so exciting to feel like I could fit in, like I could belong, even for just a little while.

You were nice to your friends, you were nice to me. Until that day you weren’t. But I doubt it even registered. I doubt you even knew what you did was hurtful.

You don’t remember, but I do. 30 years later, an amazing life, an amazing partner, an amazing family and an amazing community of my own, and I still remember.

We were sitting in a cafe with our friends and I was sitting next to you. I’m sure I was beside myself with excitement that you had sat next to me that day. I’m sure my heart was beating really fast. I’m sure it was the moment I had written to my friends back in California about, the moment I had hoped for. When you would notice me. You looked down at my legs next to yours, and you put your hand on my thigh, and you looked at me. I can’t remember exactly what you said, but the look on your face said everything: Look at the way your thighs expand when you sit. 

I can’t remember what I said or did in response. I know I must’ve been stunned. I know my heart cracked into a million pieces. I’m sure my face turned red. Nobody noticed. Nobody said anything. I think I looked at you questioningly and you laughed it off, the cruelty already dissolving in your mind, I’m sure. Then you started to tell a story to the group, and I sat there, still next to you, invisible but stuck in that booth between you and the wall.

I should have fucking hated you. I should have slapped you and asked what your mother would do if she heard you talk to a girl that way. But I didn’t. Instead my heart cracked, and I looked at my thighs, and it stuck. For life. The way my thighs expand when I sit. As all thighs do, by the way, even your skinny little French boy thighs in your pressed jeans.

I hope you grew up and never hurt another person like that. Or if you did, I hope you got shit for it from some girl more confident, at 15, than I was.

****

Dear friend from freshman year in high school who invited me to your slumber party,

Some years ago I was watching 30 Rock for the first time, catching on to the Tina Fey craze a few years later than everyone else. There was an episode where Tina Fey made a comment about a part of the body I’d never heard of before: her cankles. I laughed so hard I cried. And I cried, too. That’s it! I yelled to my husband. That’s what I have! Cankles! 

I didn’t know whether to be happy, relieved, proud, or incredibly sad that I had cankles. But at least, in that moment, I didn’t feel alone. If there was a word for it, if Tina Fey had them too, clearly I wasn’t the only woman on earth with thick calves and not-very-defined ankles.

Did you know that word 30 years ago, even though your legs were the opposite of mine? Even though you had thin legs and thin calves and thin lovely ankles, and you could wear heels without feeling like a duck? Do you remember what you said to me at your slumber party, when all of us were lying on your bed and we had our legs up against the wall?

This is what you said: “Ohmygod! You don’t have ankles!” You probably don’t remember, and maybe you can’t believe you even said it. Maybe you would feel terrible now if I reminded you. I hope so. But I remember. And it stuck. I’ve held it for all those years. My ankles that are barely ankles. My fat calves that go right to my feet. My cankles.

I thought about my cankles when I took a walk this morning. I thought about the way they hold my legs up, help my feet move, allow me to be able to take my morning walks. They work well, as well as your thin ones, I’m sure. Sometimes I joke that in my next life I’m going to have kick-ass amazing ankles and thin lovely calves, maybe I might even wear 4-inch heels. But does it really matter? Do I really care, or was a seed just planted that night at your slumber party that no longer belongs there?

****

Dear cute guy I had a mad crush on my freshman year in college,

Somewhere on some ancient diskette somewhere I have a computer diary I kept during the year I knew you. Probably 90% of it is about you, and the insane all-consuming crush I had on you. I don’t think you had a clue how in love with you I was, partly because I was only one of probably a dozen girls – maybe more – who felt the same way that year. But also because you didn’t see me.

I don’t mean you didn’t know I existed because you did. We were friends. You were nice to me. You were nice to everyone. You shared your beautiful smile generously. You flirted generously, making all of us who adored you feel like maybe, if only…

But for me there was one problem with that: You didn’t see me. Not that year, when I carried 60 extra pounds on my body, more than I felt comfortable with. You didn’t see me that year, after I had spent the previous year emotionally eating Ben & Jerry’s after my parents’ divorce. You didn’t see me when I was fat. You didn’t see me because I was fat.

Then one day, during my junior year, I ran into you on campus. I had lost much of my extra weight by then and I wasn’t fat anymore. You noticed me as I walked by and you invited me to sit down. You asked me how I’d been and you gave me your undivided attention. You were still nice to me, but in a different way. Because for the first time, you could see me.

I was flattered. I probably ate it up. But it hurts now, when I think about it. Because nothing about me had changed in those few years except my exterior. Well, maybe one other thing had changed: I was more confident without those extra pounds. But should I have been? Could I have learned to be a big girl and also love myself unconditionally? Could I have been a confident fat girl? Would you have seen me, sooner, then?

****

I have been the fat girl. I have been the thin girl. I have been somewhere in between. Regardless of my weight, my thighs expand when I sit. My ankles aren’t fat and neither are my calves, but I am built a certain way and I didn’t get well defined ankles this time around, and my calves are thick. But the thing is, even when I was fat, when I wore a size 16 and not a size 4, I was still me. I was still beautifully perfectly me.

Here’s another part of my body I discovered I had as I got older, as the weight came off: clavicles. It’s true, well defined clavicles are for thin girls. When you’re fat, they hide. My clavicles now can hold oceans. I love them. I used to love them because they meant I was thin. Now I love them because they are part of me.

And I love my flabby thighs that expand when I sit, with the stretch marks that remind me, each morning when I get out of the shower, that I was once fat. They used to make me cringe, my stretch marks, and fill me with regret. If only I hadn’t eaten all that Ben & Jerry’s… If only. But they don’t make me cringe anymore. Because they’re mine, part of me, and they tell a story.

I used to tell this victory story about how I gained weight really fast because of what was going on emotionally in my life, and then lost the weight in a healthy way; how I refound the body that felt like me. But I don’t tell that story anymore, it no longer serves me. The only victory, I understand now, is that I learned to love myself.

I think 90% of why I was miserable when I was fat was because I felt invisible and unworthy of love in that body – ashamed, ugly, hidden. We are cruel about fatness in our society. I’ve been cruel about fatness – my own and others’. And we raise thinness way up next to holiness, that thing we should all aspire to be: Thin. And if we get there, all of a sudden we are seen.

Take a moment to question why that is. Take a moment to question whether we can do better. As women. As men. As a society. Toward ourselves and toward others.

****

Dear 15-year-old girl I used to be,

One day you will be 45 and you will be thin. You will have clavicles that can be seen and they will hold oceans. You will be seen. You will see yourself and know you are beautiful.

You will also wish your boobs were bigger, not smaller. You will wish you had more curves, not less. You will still joke that one day in your next life you will have kick-ass ankles and wear heels. You will still wish your thighs were more firm.

But you will love your body. And you will appreciate all that you can do in it. And you will find comfort in that. And you will feel gratitude for all that you are. Because you are amazing. Your body is amazing.

Trust me. I know. And I love you.

how love smells

DSC_0125

I washed my hands in the restroom of a doctors’ office the other day and smelled it instantly. It lingered on my hands even after they were dry. The smell of that particular kind of medical antimicrobial soap, I will know it forever.

In a flash, for a moment, it is 7 years ago and I am back at the big sink outside the NICU, the one whose water flow is controlled by foot pedals. Or the sink inside, right next to my daughter’s tiny bed. The one only nurses are supposed to use, but which they let me use as well. That same soap. That same smell.

For a while it unsettled me to encounter it. Just over a year after my baby died in that hospital, I found myself at the sink in the bathroom of another children’s hospital in a city 2500 miles away. I had just interviewed for a job managing a research project in their NICU, and before returning to my car in the parking garage, there I was washing my hands and that smell… I almost collapsed as I watched the tears flow down my face in my reflection. In a daze I found my car, and I sat privately and cried, doubting that I was ready to be working in such a hauntingly familiar environment. Wondering if my desire to create meaning from the loss of my baby girl would be overpowered by the raw emotion of having so recently lost her. I didn’t get the job, and perhaps it was for the best. I would have been so good at it though. Good for the right reasons.

Then one day that same smell surprised me – in the moment that it went from being unsettling to comforting. It was February 2011 and I had come to the hospital to deliver the twins who had stopped growing mid-pregnancy inside me. They gave me – the grieving-mother-to-be – the largest room, the nicest room, and also the room furthest away from the other mothers (those giving birth to living children) in Labor & Delivery. I went to wash my hands at the big hospital sink and there it was… that smell. With tears in my eyes I said to my husband, “It’s the same soap.” And I just stood there and smelled it. I washed my hands at that sink many times that night, and the smell remained the strangest kind of comfort throughout.

The smell doesn’t haunt me now. Whenever I am in a medical office, I smell the soap to see if it is the same one. When I encounter it, I take the time to smell it, and I travel back for a moment and return to a time and place where my daughter is still alive. Where the possibility of her survival still exists. Where my entire purpose each day after washing my hands up to the elbows is to sit by her side and love her.

****

I keep my baby daughter’s things in a wooden chest in our home. It’s amazing what accumulates from such a short life. Not just things she touched but things that came afterwards. Like the little shrine I made in her memory for Dia de los Muertos that first fall, with three friends who had also lost their babies. Like pictures her sister drew as she navigated her own grief. Like the shirt I wore at Tikva’s blessing way when I was still pregnant, the sweater that kept me warm throughout the second half of my pregnancy, and the nightgown I wore when I delivered her.

The tiny blanket that lay over her during those weeks is in a jar, along with the hat that covered her head when we took her outside to breathe her final breaths. The stuffed lamb and the stuffed duck that lay against her fragile body are in another jar. I open those jars sometimes and take a deep inhale. The smell is the same, a little musty but so familiar. Perhaps it’s not exactly her smell, and whatever it is has replaced the familiar in my memory because I would open those jars to smell it so frequently in the months immediately after she died. Like the soap, it brings me a tiny bit closer across the divide between the living and the dead.

****

It’s been more than 7 years since she lived and died. That’s a long time. And yet there have been times during those years when her loss feels especially present. There is no rhyme or reason to why and when that happens, it usually catches me by surprise. The loss of her is very present for me right now. It’s not a stabbing pain, more like a dull gnawing to remind me. I said to my older daughter the other day, “What do you think life would be like right now if Tikva had lived?” She replied that we probably wouldn’t have my son, her brother. She’s right. We always wanted two children and Tikva would have been the second. So this little being who came and went so fast and will forever remain a baby, she will eventually come to represent something to the little boy who came afterwards, her brother.

After Tikva died, on one of the nights of our shiva, as friends and family filled our home with love and food to share in our mourning, three amazing women came through our door. Two of them had been the midwives we’d worked with during my first pregnancy with my older daughter, and it had been years since we’d seen each other. The third was an acquaintance from many years before whom I’d gotten reacquainted with when I donated some of my breast milk for her baby. I had freezers filled with my pumped milk from the two months of Tikva’s life, more milk than she was able to drink through her feeding tube, and I wanted it to go to babies who needed it. This woman who came to our shiva with our midwives was one of them. It’s hard to explain the connection you have with someone who was able to nourish her baby with the milk you pumped for your own baby who is no longer living.

She walked into our home carrying a basket of warm muffins wrapped in a beautiful napkin, and I hugged her with tears in my eyes. She did not take her basket and napkin with her when she left, and they have followed us in the 7 years since. This little basket that is perfect for small corn tortillas, and this beautiful single cloth napkin.

And you know what? It is my son’s favorite napkin. He calls it “My Napkin” and it is the only one he will use, even when it is filthy and needs washing. He throws a fit if anyone else picks it up.

And I love that. I love how it is all connected – this baby who came and went too fast, this mother I reconnected with whose baby drank my milk, this napkin that has followed us from that time and which didn’t end up in the trunk of Tikva’s things, but instead fell into the hands of my son, the one who came into our lives as the culmination of everything that began when Tikva left us.

The connection between them all is love. It’s that same connection I feel when I smell that hospital soap. It’s in the musty smell inside the jars in Tikva’s trunk. It’s the connection to love – my love, the ones I love, the love from others. The smell and the feel of love.

 

the moment

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I was out last night when my children when to sleep. They had pizza and watched football with Daddy, jumped on the new trampoline we brought home yesterday. As I left for my book club, they were dancing in the living room. I came home a few hours later and went into each of their rooms to kiss them – as I do every night – before heading to bed myself. Each of them opened their eyes briefly when I came in, recognizing me in a peaceful haze of dreamy sleep, then closed them again and rolled over. They don’t usually do that;  they are usually so deeply asleep I can hold my face to the tops of their heads  and breathe in  their smells or kiss their warm necks without a single stir.

This is it, that future I imagined for myself when I was still a little girl. This is the place where I am surrounded by love, presented with purpose, in a house filled with noisy chaos. This is the family I couldn’t even have dreamed up, but which found me nonetheless.

This is the moment I’ve been waiting for all my life.

Before I left for book club last night, I stood at the table with my daughter and looked into her eyes – those hypnotic, deep, dark blue eyes embraced by the thickest, blackest eyelashes, those eyes that droop a bit at the ends, so kind and so sparkly and so intense at the same time. We stood facing each other and sang  John Legend’s All of Me to each other, spontaneous, unrehearsed, perfect. The entire song, from start to finish.

As I listened to her voice and mine, how they are similar and how they are unique, the way they go together, I noticed how powerfully my daughter sang. She sang each word with clarity. Confident, expressive. I thought about how she is ascending in her life, finding her voice, harnessing and embracing her power and her place in the world. I could hear my own voice singing with hers, also clear and loving, but a little more timid. Not because I am afraid to sing loudly, but because that is not what I was there to do in that moment. As I sang with my daughter I allowed myself to be her reflection, so that she could see how brightly her light shines. It is not my time to overshadow her, it is my time to raise her up, to help her shine, to support her growth into the amazing woman I already have glimpses of.

This is the moment I’ve been waiting for all my life.

****

It takes daily acceptance to age gracefully, without resistance. I have not mastered this – let’s just say it’s where my ship is pointed, my intention. Lately I’ve been unable to look in the mirror without noticing the way my eyes are changing. They’re still big and wide and dark, my eyelashes still long (though not as thick as they were when I was my daughter’s age). But they are more sunken than they used to be. Tiny lines reveal themselves in the light and the shadowy thinning skin underneath them is persistent, highlighting the sunkenness. I know I am the only one noticing these details about myself; we tend to dissect ourselves with the greatest diligence and scrutiny. Yet I feel aware of the subtle yet persistent whisper that reminds me, You are aging.

My husband reminds me that I am younger in this moment than I will ever be again. Maybe so, but I don’t feel (or look) young anymore. And it’s kind of caught me off-guard.

My children are young. Everything is open to them, everything is possibility. Their skin is unblemished, their foundation solid. Their eyes are wide and aware. They are assertive and fierce. Everything is a question, everything is desire. There is so much that they need, and they trust completely that it will all be provided. By me, by Mommy. By Daddy.

I had the realization recently that one day my children won’t need me in the way they do now. One day they won’t need to talk to me every day, to ask me a million questions. One day they will remember to wash their hair and clip their nails and do their laundry all on their own. One day they won’t need my hugs and kisses to begin their days. One day they will find their own answers.

This is the moment I’ve been waiting for all my life.

****

My father is a very handsome man. He was a handsome boy, a handsome young man, a handsome middle-aged man, and now he is a handsome older man. The older he gets, the more he resembles his father, whom I only knew as an old man. My father grayed late, but now his hair is almost completely white. His skin is thinner, more spotted. His body, affected by Parkinson’s, more unreliable. His hands still feel the same as those younger hands that held my tiny little girl hands. His own eyes are more sunken. But those eyes… They are the same eyes. Dark and deep and alert, reflective, loving. When I look at his childhood photos I see the same eyes. When I stumbled onto the black and white studio portrait from his twenties where he is dressed in a black suit, holding a cigarette like a classic movie star, I see the same eyes. When I close my eyes and find myself at my desk in my bedroom reviewing multiplication tables with my young father, I see the same eyes.

I see them now, within his older, more hazy, more sunken eyes that are somehow the same and different together. Just like my own familiar yet different eyes.

I think of the fragility of an aging parent, how I connect to this and also to my own aging. How one amplifies the other. I think of the contrast between my children and my father, and the place on the spectrum – somewhere in the middle – where I find myself.

This is it. This is the moment. The moment I’ve been waiting for all my life.

almost time

mandala

A mandala I made of my favorite quote by Leonard Cohen from the song, Anthem

****

It’s almost June 10. Almost my Tikva’s seventh birthday. Almost the beginning of the two months of summer between the day she was born and the day she took her last breath in our arms.

During the first few years after Tikva died, those two months each year felt like they were engulfing my summer, taking away from me the possibility of truly savoring what had always been my favorite time of year. I wanted more than anything to just get to August 8, to return to the 10 months of the year that weren’t a daily reminder of the child I had lost. To be in a place where the loss of her didn’t overtake every cell of my being, every second of every day.

It hasn’t been like that in recent years. For the last two summers, in fact, I didn’t even realize it was August 7, the anniversary of her death, until I received a text or an email from a loved one wishing me a peaceful day and remembering my baby girl with me. It always moves me when someone remembers, when they reach out; and it surprises me when they remember before me.

But really, I am not so surprised. Her birthday will always matter, but the day she died holds less weight now. I think it’s because I don’t relate to Tikva simply as my child who died. She is my second daughter, one of my beloved children. She is the one I got to touch and hold and love in her body for a only short time, the one I will continue to love in my heart always. She has become – or or perhaps she always was – a part of every cell of my being. Because of that, the loss of her no longer overpowers me.

She is with me and absent. Inside me and very far away. Her story is in the past and will forever be told. I think that’s just how it is when your child dies before you.

Sometimes she feels more like an experience than a baby – I find myself talking about that time as, “During Tikva.” Because I was completely transformed by her, by her life, by the loss of her, and by the process and stretching and struggle and growth of the years since. I am not who I was before June 10, 2008. I am not who I was before January 23, 2008, when we first learned about her condition in-utero. I think I am better because of her. I think she helped me drop more deeply into who I get to be in this life.

It gets easier. The cracked and jagged edges get smoothed out a bit more with each year – like beach glass, eventually polished smooth and shiny after years of travel in both tranquil and tumultuous ocean waves. The sharp pain transforms into something that feels less raw, less fresh, as if it has been diluted with love.

On January 23, 2008, after the ultrasound that diagnosed the difficult and unclear road ahead for our daughter, I prayed in the classic sense probably for the first and only time in my life. I cried out, “Please don’t make me bury my daughter. I don’t know if I can survive burying my child.” But I did. I loved her and I buried her. And I did survive, and almost seven years have passed, and I am here. Still standing. Still loving.

And now, with the time that has passed, I can hold the hand of a friend who lost her child more recently and promise her with all my heart that she will get to a place where the jagged edges soften and the pain is consumed by love.

the myth of perfect, or: you are not alone

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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.

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.

****

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.

almost

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I wrote something on one of my earlier blogs about lemonade. It wasn’t really about lemonade; lemonade was just a metaphor. I wrote it almost four years ago about something that happened exactly four years ago today. I wrote it about the day I birthed twins who had stopped growing, one at 10 weeks and the other at 18 weeks. So I went searching for that post today to reread it, the first time I have reread it in at least three years. I didn’t wake up aware of this strange anniversary; I realized it a few hours into my day. I realized I felt neutral about it, not triggered, not emotional. I realized that four years feels like longer. It feels far away and yet I can bring myself right back to that hospital room where drugs administered through an IV slowly convinced my hesitant, mid-pregnant body that it was time to release my babies.

A lot of hope left me that day. Hope for the promise they brought after the loss of Tikva two and a half years before. Hope for siblings for my older daughter, who had waited for so long to be a big sister. I wrote that post with both sadness and bitterness, holding a white flag of surrender.

And yet hope came back.

I can’t say exactly how or when, but it came back, slowly, over time. We chose a different path to growing our family, to bringing into our fold another child to love and hold and help to become himself. There was a point when I let go of the need for that child to come from my body, and with that release came a calm I hadn’t felt since I learned about Tikva’s condition when I was 21 weeks pregnant with her seven years ago. And here I am, four years since I delivered two almost babies who had died, with a feisty, smiley almost-two-year-old kicking soccer balls and throwing footballs to his big sister, laughing as they tackle each other on the rug.

On February 22, 2011, I wrote:

You don’t get to love the way you think you’re prepared to, but you do get to love the way you discover you can.

Somehow even then I knew I needed to understand this, or at least come to believe it. And I was right.

I wonder what life would be like if three-and-a-half-year-old twins were running around the house right now. Or if Tikva had lived, and a six-and-a-half-year-old was playing with her older sister. I think of how I wouldn’t have gotten pregnant with the twins if Tikva had lived; how we wouldn’t have adopted our son if any of them had lived.

I think a lot about parallel universes that might exist side by side with the one I exist in; other roads I was on that did not continue because my life took one detour, and then another. What it would be like if… And if those realities are perhaps still happening somewhere in time.

I’m remembering those little ones today, my almost babies who got away. How much I wanted them and loved them for the time I carried them and held them. How different it is to mother them than it is to mother my living children. How I will love them always.

 

my mother, my self

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“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.”    ~Anne Lamott

When I was 10 or 11 years old, my mom took me out to lunch, just the two of us, at a crunchy food court place downtown. We went often; I got beef teriyaki with green onions over rice and she got vegetable tempura or something with tofu from the Japanese place. Then we’d find a table and eat our meal.

That day, as we waited for our food, I saw another mother out with her grown son. He was probably about 20 and he had no hair. His eyes looked sad, maybe tired, and they stared off into the middle distance. I didn’t know why he had no hair, or why his mom, who was smaller than him, held his arm and helped him walk. But I wanted to know, I sensed that there was a story there and so I watched them as they ate their lunch near us. I didn’t say anything to my own mother about it until we had left the building and were waiting to cross the street. I remember exactly where we were when I did – in front of the Woolworth’s that for a while became a Long’s and which is now long gone.

“Did you see that man with no hair who was eating with his mom? Something about him felt so sad. What do you think was wrong with him? Do you think he was sick?”

My mom became noticeably tense from my words. Her face got very serious and she grasped my hand tightly. Then she looked at me and said, “Be careful. You need to keep your energy separate from others’. Don’t take in their pain, their feelings. That energy can hurt you.” There was a very real fear in her words and in the way she spoke them. I don’t remember responding.

This is one of those moments from my childhood that I remember with such clarity that it could have been just last week that I was the age my own daughter is now. I don’t remember having a longer conversation with my mom about this, but I do remember thinking deeply about what she’d said, not just that day but for years to come. As her own story as a mother unfolded, her words began to make sense in a way I hadn’t truly understood them before.

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I’ve often thought that the story of my mother’s departure from our family just a few years later would make a great work of true-to-life fiction, but I have hesitated to write it. I remember a conversation with my husband when he was just beginning his studies to become a rabbi. We talked about how the Torah doesn’t command us to love our parents, but it does instruct us to honor and respect them. Even in the years when contact with my mother was elusive, I always had a desire to respect her need for privacy, to respect the parts of her story that were solely her own to tell (or not to tell). I still do.

But her story is also my own story. Her choices, her actions, her needs and her mistakes – they have formed me. In ways I’m not sure she really knows, my mother has shaped me – during her years of presence and her years of absence. While I am no longer the daughter whose mother left her who became such a central part of my identity during my teens and twenties – the years when I was either burying my anger and sorrow in Ben & Jerry’s or working through them in therapy – I am still and forever my mother’s daughter. So, in the words of Anne Lamott, perhaps if my mother had wanted me to write warmly about her (or not write about her at all), she should have behaved better (and not encouraged my writing since I was a child). This is probably a good time in my life to look at that story because all these years later my anger has mostly dissolved. I don’t know if warmly is the word I would use, but there is love there. Forgiveness even. A loosening of the entanglement that binds me to my mother.

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I understand now that the words my mother spoke to me that day in front of Woolworth’s were a reflection of her own fears. Even then, several years before her need for independence pulled her from our lives, I think she may have been consciously separating herself from the heaviness she felt in the world around her. The thing is, I didn’t understand then how what she was telling me to do was even possible. Not feel the sadness around me? Not feel compassion for those in pain? Not feel incredible joy when those around me felt joy? How do you do that – not feel empathy – and why would I want to?

My mother, I also understand now, is a lot like me – highly sensitive to everything around her. But we are different, too: What I feel, what I take in because I am sensitive, doesn’t scare me. I feel like it is why I am here in this life this time around. If I’m not here to connect deeply to those around me, to everything around me, then what’s the point? Is there anything more important than connection? Is there anything more juicy, more fun, more thrilling, more real?

We are permeable, emotional and connected beings, even the most reclusive, the most aloof, the most removed among us. We can’t help it and sometimes we fight like hell against it because it can be scary to connect, terrifying to truly feel each other. We might hurt each other and we might be hurt. We might also be cracked open in the most magnificent ways.

During the years just before my mother left when I was 15, she was already beginning to withdraw, to hide out. After she left, there were many years when I allowed myself to disappear into the loss of her. Who was I without her guidance, without this woman who had so often been my best friend? Was I still her daughter? Was she still my mother? Food quickly became a comfort and I ate a lot after she left; and while I got bigger as a result, in many ways I felt smaller, more invisible inside my new larger skin. (That’s another post, though, about the ways in which we see each other differently – or don’t notice each other at all – because of size, color, age.) I hid in that new body for several years, hid from the loss of my mother, from the pain she had unleashed in me, from my anger towards her. I was absent without her presence, and so I became the daughter whose mother left her. This became my new identity.

I imagine that it wasn’t always easy for my mother to be a parent, even during the years when she was a really good mom. I know it couldn’t have been easy for her to leave, to dismantle her life and build a new one, to miss all those years in the lives of her children. But something made the separation necessary. I think she needed the space to figure out who she was. And while as a mother myself it’s hard to imagine how anyone could leave her children, because I am a mother there are days when I get it. Mothering is hard work and requires both the deepest connections and the clearest boundaries. I have yet to meet a mother who has mastered this. (If you are out there and have advice to share, please let the rest of us know.)

Maybe, though, it’s less about mastery than about compassion and gentleness – mostly towards ourselves as the nurturers, and also towards our children when our very last button – you know, the REALLY BIG RED one that reads, DO NOT PUSH THIS BUTTON OR ELSE! – is about to be pushed. We’re never going to be perfect, I’m not sure there is such a thing as the perfect mother.

I am deeply entangled with my children – in good ways, in ways that stretch me, in ways that trigger me (my daughter still has to get through middle school), in ways that create space for our relationship. There are days when it’s easy to feel like I am disappearing, as if without my children I’m not entirely sure who’s left. A few weeks ago at dinner, asserting my motherly right to sit at my usual place at the table next to my toddler son on a night when my daughter wanted to sit there instead, I heard myself saying, “I exist too! I have needs too!” My husband and children held the befuddled looks on their faces for about one tenth of a second before bursting into laughter, and about two tenths of a second later I joined them. I am at my best as a mother – as a human – when I can remember not to take myself too seriously.

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While it has loosened over the years, my mother and I are still deeply entangled. It’s been more than two decades that my voice has sounded like hers. My cheeks are hers, especially when I smile. I have her big eyes that smile along with my mouth. My hands look like her hands, especially as they age. We have had the same laugh for a very long time. I am a good mother like she was during those early years, and since some of the pain of her abandonment has dissolved, I can let myself connect with those times. I am sometimes prone to worrying like I remember her worrying, like I am sure she still does. But I am conscious that her fears are not my own, and I know how to assuage my own fears when they show up. I am no longer the daughter whose mother left her, but her leaving is forever a part of my story.

And what I became afterwards… well, that is the real story.

 

 

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.