I Want to Tell You

I know it
doesn’t matter, no matter
how I spin it.
And I suspect
you don’t need
to hear it. And I suspect
you don’t want
to hear it. But I want
to tell you–and I
am just sad enough, because
of the gray sky
or maybe all the lost dogs
and definitely the dead
children, that my membrane has
thinned, supple now,
penetrable as the vulnerable
new skin over a newborn’s skull–
that I miss you.

Last Night

 

The Mother Bed

Last night I put my arms around him as he lay in bed, eyes on his tablet, knees pulled up to his chest. Such long legs, getting thicker by the day, but I can still see his baby self in his skin. I’ve given him his seizure medications; I’ve washed his GTube insertion, applied Desitin, a square of gauze. I know I should tend it twice a day, but once is all the time I’ve got. I’ve dosed him with Melatonin in hopes he sleeps the night away, no tossing and turning, no cries in the night, no hours of wakefulness that have come in swaths since he was an infant.

We still share a bed even though he is eleven. You may find that inappropriate. Certainly some people do. Sure, he hasn’t had a seizure in a year and a half, thanks to the nutrition via his GTube we assume, so maybe he’d be safe on his own, but how can I know? Always our bedsharing was a necessity born out of fear. His seizures most often happened as he moved between levels of sleep. They were silent and too long, not violent and quick as most people imagine, as is often shown on TV. Instead, he just grew stiff, unresponsive. While I’d have loved to believe some kind of inner instinct would rouse me to some unusual silence across a hall, real life doesn’t often work that way. Otherwise there would be no death by middle-of-the-night fire, or while-they-slept burglaries, or children who go missing as though taken in the rapture.

What about your husband, your marriage, people ask me. And maybe I can’t explain that this is not a zero-sum game: both of us benefit from our son staying alive. The fear of SUDEP, which sounds like a cold medicine, but is how people with epilepsy sometimes die, still lingers. I have always been afraid that the one time I look away, he will suddenly disappear. Not his body, but his life. Evaporation. Ether. One time he had a seizure and I was alone with him and his lips turned blue and he stopped moving entirely, and that’s a thing that happened, and reason is no match for memory.

So bedsharing became the default, but is now a necessity because I fear the exhaustion that switching him to his own bed will bring on. When he wakes up at night, he wants a comforting hand on his back. Or a change of clothes if he pees through his night-time pull-up. Or for help finding his comfort blanket. I have grown better at falling back asleep after such disruptions, but rarely do I get a full night. When we begin to train him toward some additional independence, surely I will get even less. You may think that’s selfish, but eleven years is a long time to be tired, and sanity is a commodity I’ve learned to hoard.

I told someone today that I’d never had a driving need to be a mother, and the decision to have a baby had been more strategy than longing. On the verge of thirty, in a happy marriage with a man who deserved to be a father, I asked myself this: on my death bed, what I would regret more, not having children or having them? The answer seemed clear at the time, and so we did. (Before you ask me, we stopped at one, because he has been enough work and worry for two.)

When I hear stories of women who suffer due to childlessness, I can’t find a way to put myself in their shoes. When I hear women celebrate motherhood, they are speaking a language that sounds like my own, but the meaning gets lost in the distance between their mouths and my ear. I have a friend who has prosopagnosia, the inability to recognize faces, and that seems as good a metaphor here as any. It’s like I recognize the individual features of our common experience, but I can’t put them together to form a picture that is identifiable to me.

Simply, I don’t know what it’s like to be purely glad to have had a child. I sound cold, I know. But I can’t claim joy at having brought a child into the world who will struggle as mine struggles. That would require me to go to great length of Pollyana-ish denial, and I have far too much guilt for that. Yes, I am a better person. More compassionate, more selfless, more multi-faceted. And yes, he perfect in his imperfections. And I do often wonder when thinking about belonging, about helping him find a place in the world, if our culture is more the problem than his disabilities are. Sometimes I try to challenge people in rethinking the way they think about seizures, about special needs, that euphemism I have grown to abhor. But I would trade all of those personal gains, all of my drop-in-the-bucket activism, for having given life to a child who will be able to talk, to read, to shop, to drive, to work.

You see, I am ambivalent about being a mother, and as my child grows bigger but doesn’t truly age, I expect my feelings to remain complex on the matter. But after years of chastising myself, I now know this: it is possible to hold these two truths in my heart at the same time. There is nothing I love more than this child who I would never have decided to birth had he not appeared to me and bade me love him, like a stray at the door whose scars and ferocity are a lesson, not a reason to send it back in the rain.

I love my son most when we are quiet and I hold him in my arms and my heart, and the ache of loving him burns through me like I’ve downed a tequila shot and eaten the whole lime both. That’s not very romantic, but the visceral rarely is. Motherhood rarely is. For me, it is still poop and drool and too-sharp nails and sometimes bites and lots of embarrassment over his public behavior, and always, always, tiredness. My pride cringes as I tell you we still share the same bed. But I would take a hundred more years of all of those struggles, ironically to outlive my child whom I have always feared would die, because I have never been so afraid to leave someone I have always be destined leave.

 

What I Saw

This morning, the hoary light in the guest room where my husband now sleeps frosts him with a silver shadow, turns his spare body hair white, his head hair, once dark, a willow’s worth, to fuzz on felt. I watch him rise from the edge of the bed, shuffle forward in baggy boxers, a basket of medications in both hands, held out like an offering, held out like the plates of food he hands back to me because he is too sick to eat. He looks ancient, a golem, still broad but bent shoulders narrow too narrowly, a street puppet wavering on stilts, bracing for the next blow, a marionette whose master is cancer.

the summer i turned eighteen

They Broke my legs
both femur Bones
Broken in half.

They removed one
and a half inches of Bone
from my strong right leg
inserted that Bone
(imagine: what could look
like sawed Bone? imagine:
sawing bone.)
between the Break
in her weaker left sister.

They used my Bones
as counting beads
as building blocks
to grapple
with impotent equations
(1.5 + -1.5 = 0)
to prove science
dominates nature.

They evened me out
3 inches.

They slidshoved (imagine!) metal
rods like skewers
down
into the spongy marrow
of my Bones.

They screwed metal
plates nestled next to Bone
and i remember
i woke screaming
when
They drew my Broken legs
bent at the waist
up over my head
(Perhaps I imagined)
a better angle for x-rays.

They said walk
and i did 2 days later
i imagined i would die
wished
They would die
imagined she
the athletic blond therapist coaxing
me onto two Broken legs
with platitudinous encouragement!
to walk
on two Broken legs
would die.

For eighteen years
They described my leg as discrepant
and i believed
that discrepancy
was me.

i watched a movie called
Misery
and she broke his legs
with a sledgehammer!
to keep him still, to keep him
home. It whispered
memory
into my ear
this (imagined?) horror.

how did They
Break the legs
begin the punishment
of the criminals
who hung
on crosses
next to jesus?

They were god.
father, son, holy ghost
my mother
bless her believing heart
turned me over to Them.
They were healers, mayo clinic, blue masks, sweet
air like candied fruits lining my mouth, like sweet
cellophane, a Disneyland sleep, reach sweet sleep
count 100 backwards, imagine peace.
They were teachers and coaches
who said no,
who refused to Break
the world open
for a little girl
for whom no
would always be the answer.

They said i couldn’t
play on the swings
skate like dorothy
tumble like nadia
It was no use to imagine.
They said i couldn’t run
on the bases. Took me off 1st when i earned
my place and replaced me
with someone who could.

i wonder who
They imagined I would become
(who I could have imagined being)
before
They Broke my Bones
the summer I turned eighteen
and I felt my spirit
slip away.

Lucky Girl

There are nights when I first lie down in bed that I wish it were morning already. That admission hints to a sort of optimism, doesn’t it? It makes me sound like I’m an early to bed, early to rise, tidy kitchen keeping, porch swing tea sipping optimist who can’t wait to take the next day’s tiger by the tail. Instead, it’s my biological warning system that tells me it’s going to be a long night of insomnia, of my feet being too hot and my arms too cold, of my mind already being smack-dab in the middle of tomorrow, of my feelings being too raw, all jacked up on the caffeine of worry. Worry about my son and whether he will sleep through the night, whether the long-dreaded, but no doubt inescapable seizure will strike, as he sleeps next to me. Or I am too conscious of my husband, sleeping or not sleeping in Noah’s bedroom, now my husband’s sick room that is starting to smell stale with lack of movement in the air, of his body. Nights like those, I can feel my heartbeat in my ears. (Zoloft has helped; I don’t have any problem admitting that, even aloud at the brunch table or during a meeting. And it’s doubtful anyone looks at me askance because it’s pretty well-known that if anyone needed some drugs to make it through the day, it’s me.)

Ridiculously enough, I consider myself a lucky girl. And that may be the true test of my inner optimist, but I’m not sure if that’s a result of my brain chemistry or my brain on chemistry. Still, I have few complaints despite my many challenges. If I skim through the pages of medical campaigns on gofundme.com, the community fundraising site, I know in my bones that it could be worse. That’s not just a cliché. There is one woman who has had the majority of all of her limbs removed due to a late-diagnosed case of Rocky Mountain Tick Fever. You can’t tell via the page her relatives created, and obviously I can’t ask her, but I assume she still wants to live, and that’s saying something.

Me, I’m astounded every day that I am someone with a story. Sure, everyone has a story. And I’ve always had a story to tell, about my own adoption, my surgeries, the deaths of my parents. But now I have the kind of story that can be donated to, and that meets the criteria for state assistance. (I mean, we have a freaking case worker! Don’t “other people” have case workers?) Our gofundme campaign earned $7500 in 5 days. The story is this: my husband has recently been diagnosed with leukemia. My son, 10 years old, has a seizure disorder and global developmental delays, and more relevant to anything, needs attention; he is not toilet trained, he would stop eating after 3 bites of breakfast, lunch or dinner, if we didn’t feed him, spooning food into his mouth, or hooking his G-tube up to a bag of non-food food. I joke that if there is something for him to run into, he’ll run into it.

Still he’s kind of a typical kid. Just a young one, for his age, cognitively a toddler, but with a will to do things he cannot do. He loves to swim, but can’t actually stay above water. He wants to climb to the highest point, but he doesn’t really know where his feet are when he places them on the rungs of the jungle gym. He loves the zoo, but his vision impairment prevents him from seeing the animals. He demands a lot of energy and patience. I joke (again with the jokes) that he is 1.5 children, so it’s a challenge to be outmanned by him when you are caring for him alone.

But here’s the deal: I’m not sure what I expected. What does anyone expect from life, when you have no idea who you will be as you age, or what will happen on the way? At some point you learn, if you don’t look too carefully at your sorrows, if you glaze your eyes over just a bit when giving them a stare-down, the edges are dulled and you can run your mind along them, like your finger on the blade of a knife, without feeling the cut.

Brene Brown’s Rising Strong

(This review appeared on 800-CEO-READ’s In the Books here.)

I was an enthusiastic supporter of Brene Brown’s previous book, Daring Greatly, touting it as one of the best business and personal development books of 2012. And I also found myself sharing ideas from the book with friends. It seemed to me that encouraging leaders to be vulnerable was a daring endeavor in and of itself. It’s tempting, as a leader or manager of a business, of a household, of a life, to believe you must be invincible, unwavering. But when those qualities are just protective coatings like so much Teflon, we miss out on tapping into real strength, which Brown says is sourced in vulnerability. Just as it is said that a broken bone weaves itself back together more strongly than prior to the break, being vulnerable is scary and painful, but we become stronger when we live as “wholehearted” people.

Coinciding with the publishing of Daring Greatly, Brown participated in Oprah Winfrey’s Super Soul Sunday, expanding her reach to an enormous audience even beyond her 2010 TED Talk that has garnered over 21 million views. In Rising Strong, there is a tendency for some “Oprah-speak” to bleed into the text which was somewhat refreshingly absent in her earlier work. Here you will hear Brown refer to “standing in your truth” or “living your best life,” but if you are either drawn to that language, or able to skim through it, you’ll find many valuable insights within. In other words, don’t let her current mainstream appeal distract you from the fact that Brene Brown is a research professor—an academic first and a public figure second.

In her 12 years of study of social theory, she says in her more recent 2012 TED Talk on shame, that she has learned that vulnerability is the most “accurate measurement of courage” there is. And what we believe to be weakness in ourselves (terrified of getting up to speak at a public speaking event) is most often seen as courage by other people (the attendees of said public speaking event who are too terrified to get up and speak themselves). Doing “it”—whatever it is that scares you, or makes you uncomfortable—regardless of the fear of vulnerability or shame is the bravest thing you can do to reach deeper into what you are truly capable of in this one life. That’s pretty convincing and motivating stuff and why I thought Daring Greatly was a game changing book, especially for the workplace. Brown advocates:

Vulnerability is the birthplace of innovation, creativity, and change.

Which brings us to Rising Strong. In the years between books, Brown realized that just advising people to get their emotional hands dirty wasn’t the whole picture, so here she is instructing us on how to survive during and thrive after our forays into vulnerability. Opening yourself up to plumb the previously untapped depths both within yourself and within your life sounds great, but there is a reason we resist: failure hurts. That seems obvious, but Brown makes the wise observation that if we don’t take that risk, we risk all the more because when we put up walls we don’t just protect ourselves, we tend to hurt others when they run (or we push them) headlong into those walls.

There are too many people today who instead of feeling hurt are acting out their hurt; instead of acknowledging pain, they’re inflicting pain on others. Rather than risking feeling disappointed, they’re choosing to live disappointed. Emotional stoicism is not badassery. Blustery posturing is not badassery. Swagger is not badassery. Perfection is about the furthest thing in the world from badassery.

(Side note: I love when Brown drops the Oprah-speak and embraces instead her Texas-talk.)

Certainly the self-help messaging will find its audience of people who are instinctively curious about their inner life. But Rising Strong has a universality—everyone is going to fall (i.e., be struck down by disappointments and losses in life) so how you get up matters. What you learn from the struggle matters. For Brown, rising strong is all about finding your vulnerability first, and instead of running from it, experiencing your emotions instead of acting in reaction to them. That’s what she terms the “reckoning.” And she makes clear that all people are, by design, feeling people, and so this work can happen in every facet of your life. In other words, you can’t leave this work at home.

Just because you’re standing in your office or your classroom or your studio doesn’t mean that you can take the emotion out of the process. You cannot. … The most transformative and resilient leaders that I’ve worked with over the course of my career have three things in common: First, they recognize the central role that relationships and story play in culture and strategy, and they stay curious about their own emotions, thoughts and behaviors. Second, they understand and stay curious about how emotions, thoughts, and behaviors are connected in the people they lead, and how those factors affect relationships, and perception. And, third, they have the ability and willingness to lean in to discomfort and vulnerability.

Because Brown focuses her work on qualitative research, it can seem like her work is more anecdotal than scientific (despite her frequent references to her research); however, that is an approach that makes this particular message most effective. The stories of how other people have learned to work with instead of against their emotions makes the practice seem substantially more doable. While this book is definitely for those people going through grave life struggles, it is also for people who are struggling to find their way in relationships or at work. In fact, it is with the small instances that it is best to practice accessing your vulnerability and the process of Rising Strong.

Brown gives her own example of this small scale struggle and revelation within her own marriage. (She might disagree with the idea of this instance being small scale because each small incident adds up to big bad life habits.) She recounts a story about taking a risk to share a tender emotional moment with her husband, only to be rebuffed. Her instinct, as is typically ours, is to shut down, create stories in her head for why he refused to be engaged, and prime herself to lash out. Instead, she encourages them both to reflect back on that moment, dig deep into both their vulnerabilities for why he rebuffed her (he was fearful of looking weak in a frightening situation.)

This is what Brown refers to as “the rumble.” When we feel something, instead of running from it, we should turn around face it, and engage with it. A friend of mine, many years ago, taught me the idea of “sitting with” emotions. At the time, because I hadn’t done much of that practice, let me tell you, I didn’t really get it. I thought I was really good at hanging out with my emotions simply because I was an emotional person who reflected on those emotions an awful lot. But over time, I’ve realized what that means. As Brown says, when we do feel emotions, we tend to jump a la hopscotch to other ones, rationalizing or controlling them through story, rather than really spending time with ourselves. Whether you “sit” or “rumble” with your emotional response, the trick is to stay with it in its most basic form.

In each chapter, Brown presents a story about how someone (often herself) has rumbled with emotions, including, in Chapter 9, called “Composting Failure” which deals with “rumbling with fear, shame, perfectionism, blame, accountability, trust, failure, and regret.” That’s a lot, but a lot that I’m familiar with too. In 2004, after receiving a stack of rejections from publishers and agents, Brown decided to self-publish her first book, then titled Women and Shame. That doesn’t seem like such a big risk now, but self-publishing was definitely not the norm a decade ago, and she became ashamed of having asserted herself (I wrote a book, and it’s worth reading!) without the backing of a powerhouse publisher endorsing it. Even after getting enough word of mouth and republishing more traditionally, as I Thought It Was Only Me, the book fell flat.

In a moment of desperation, I scrambled to put together a book reading in Chicago, where I was already doing a lecture for mental health professionals. It was the coldest February day on record. Five people came to the reading. One woman was drunk, and two of them were there because they thought I was a mystery writer.

(From my experience working in the bookstore world, readings are the ultimate in vulnerability.)

Finally, her books were remaindered (she calls it “composted”) and the entire process filled her with shame and feelings of failure. Considering her current successes, it’s easy to see that she successfully rumbled with those emotions. “As I would learn, the hardest part of coming out from hiding is facing the painful work of rumbling with the real story. And the real story was that I had set myself up for failure.” Given her massive successes following that experience, clearly Brown figured out how to leverage the realization that, next time, she  “wasn’t going to … wait for someone to knock on my door and ask me about my work. I’d put on my shit-kickers and start knocking on doors myself.” And that realization becomes what Brown calls a “revolution” in thinking. And in this case, she embraced the lesson:

Failure can become nourishment if we are willing to get curious, show up vulnerable and human, and put rising strong into practice.

I’m writing this review of Brene Brown’s latest book, Rising Strong, on the very day that it’s due to be published here. My coworkers in the marketing department are expecting me to produce this piece, as I committed to it several months ago. Several months ago, I was pretty pumped to read this book since, as I mention above, I was a big fan of Daring Greatly. And back in May at Book Expo America I came very close to meeting Brown in person at an evening cocktail party put on by Penguin Random House. Just as I moved to approach her, she was spirited away to have her picture taken with Gloria Steinem. I ended up leaving the party without speaking to Brown about her work and new book, sad that I’d missed the opportunity, but still giddy about having worked up the nerve to approach Gloria Steinem and introduce myself earlier in the evening.

But things change quickly in life, and having nothing to do with Brene Brown and her book, I got sidetracked. My husband was diagnosed with leukemia over the summer, and this event and the following treatments left us feeling like we’d been either hit by a train, or that we were pawns in some kind of practical joke. Many times over the past two months, I’ve looked at the cover of Rising Strong on my desk, thinking how ironic it is that this book likely speaks directly to how I can better deal with my family’s current circumstances, but I couldn’t bring myself to pick it up and read it. It felt a little too on the nose. My instinct was to coil away from the book, thinking, I don’t need anyone telling me to keep my head up.

Despite the heavy distractions weighing on me from home, I am committed to doing my best work at the office when I possibly can. I love this company, and my coworkers are such a comfort and support to me, that it’s often with great peace that I spend some time at my desk plotting strategy, brushing up on upcoming titles, answering emails… or writing book reviews. So it is that the deadline for writing a review of Rising Strong arrived and I’d not written a single word. (You can imagine what Brown would say to this: that I was refusing to rumble.)

But, when my son woke up at 3am this morning and I had some time on my hands, I knew what I wanted to write. I wanted to write about how Rising Strong has indeed influenced my understanding of events and reactions in my own life. Having finally opened the covers over the past two days and reading the words I found myself afraid to read—I don’t just get to gloss over my feelings while my husband fights this cancer, but I’m going to have to deal with them??—well, I felt reassured that it was something I would be able to do. I could reckon with my fear and my inconvenience (because let me tell you, cancer turns your well-planned life upside down); I could rumble with my emotions instead of tamping them down in an effort to contain them, to be stoic, and to present myself as in control (since that’s pretty much impossible); and I could find within myself the ability to keeping “choosing curiosity and connection rather than walking away or shutting down,” a revolution in and of itself.

As you can imagine, it is easier to create stories around my husband’s diagnosis, stories that include blame and anger and jumping far into of the future, than to accept this random happening as…random and outside my control. It’s also easier to create a role to play so that you needn’t show people the extent of your fear, your hurt, your burden.  In her chapter “Easy Mark,” Brown describes what happens when someone puts on a suit of emotional armor, or “learned behaviors for getting out from under fear and uncertainty” when confronted by the loss or potential loss of a loved one:

Over-functioning: I won’t feel, I will do. I don’t need help, I help.

Under-functioning: I won’t function, I will fall apart. I don’t help, I need help.

Upon the news of my husband’s illness, I definitely dove head-first into over-functioning. I told a coworker in defiance, yes I can do it all! I can work, I can parent, I can support my husband, and I can have a life, all at the same time. Damn it, I was going to cope like no one had ever coped before! Super Woman has nothing on me. And then I looked at the long view. I looked at what this illness would cost us, both in time and in money. I realized how aged I was already feeling when trying to do it “all.” I realized that it was going to be a long road despite the many friends offering help. Not only was it completely out of my norm to ask for help; I didn’t know how people could help me in real time. It would have been tremendously easier, if lonelier, to put people off and contain our struggles within the walls of our house instead of sharing them with others. This was going to be hard.

Brown, in her first chapter on “The Physics of Vulnerability” lists some basic laws. And the one that struck me the most intimately was this:

This journey belongs to no one but you; however, no one successfully goes it alone. Since the beginning of time, people have found a way to rise after falling, yet there is no well-worn path leading the way. All of us must make our own way, exploring some of the most universally shared experiences while also navigating a solitude that makes us feel as if we are the first to set foot in uncharted regions. And to add to the complexity, in lieu of the sense of safety to be found in a well-traveled path or a constant companion, we must learn to depend for brief moments on fellow travelers for sanctuary, support and an occasional willingness to walk side by side. … For those of us who prefer to cordon ourselves off from the world and heal alone, the requirement for connection—of asking for and receiving help—becomes the challenge.

After some initial waffling, over the past two months, I have made myself more vulnerable than I have ever been comfortable with in the past. While my husband was in the hospital, I accepted daily dinners dropped off on my porch by local friends. My dog has received more walks than he has come to expect all his life due to my willingness to say yes to friends who are willing to take him through the neighborhood (and trust me, that’s not an easy job because he’s not an easy dog). And, successfully working my way through my pride and shame, I created a gofundme campaign to ask our friends and family to help me fund childcare for my son as my husband will be unemployed and unable to care for our child during his illness and lengthy recovery. The process and response was humbling. And, if I’m honest, I know I will need to continue rumbling with my feelings of shame. I will need to continue rumbling with the fear of lost friendships; that the burden of helping will drive people away. And I will need to continue rumbling with feeling unworthy.

So as I read Rising Strong, instead of feeling like I was being lectured on how to master my emotions, I found an ability to reframe the experience of putting myself out there: I feel the helping hands of a hundred people reaching out because I was willing to be vulnerable and reach out to them. The circle of strength that flows through that circle of hands will get us through the upcoming challenges. And I suppose, by telling this story here, spreading the word even further, gives me more practice in vulnerability, and wholeheartedness.

When I first became the general manager at 800-CEO-READ, we held a meeting at which I tried to explain to everyone why I was confident I could do this job. At the time, even before my husband’s cancer, I’d had plenty of challenges in my life that have ‘knit my emotional bones” together, making me strong. I shared these challenges, these losses and disappointments and hoped that this would help them understand why they could trust me to lead. And now, in the face of this new personal mountain to climb, I hope that as I continue to offer my story and lead with my (very human) super powers that include effort and attention, rather than perfection and control, our staff at 800-CEO-READ is made more comfortable leading their own whole lives in the workplace, knowing that we establish team trust through vulnerability and strength through support.

And perhaps an introduction to Brown-speak will give us some common language with which to improve:

Curiosity, clean communication, circling back, and rumbling become part of the culture. Just like people, when organizations own their stories and take responsibility for their actions, they get to write the new endings.

Brene Brown’s work in social theory, which is an engaging mixture of qualitative storytelling and quantitative research, has some valuable skills to teach us, whether our struggles are small-scale or life-altering. Learning to partner with our emotions as opposed to making them the enemy—which is exactly what Rising Strong will help you do if you are willing to invest the effort—can lead to what Brown calls “wholehearted living,” and what I would call survival.