Three Mothers (revised)

I

Wonder

I was born prematurely. I’m not sure how early I arrived into the world, but I know I was small. Four pounds, thirteen ounces. Small enough, it seems, that survival wasn’t guaranteed because it was 1971 and I was very sick. For the first two months of my life, I was a patient at the University of Minnesota Medical Center in Minneapolis while being treated for an infection in the femur of my left leg. At 4 pounds and 13 ounces, I was small. Having been given up for adoption immediately, I had no birth mother to tell me the tale. Instead, I have three sheets of paper from Lutheran Social Services that spins out a narrative written by an administrator named Jackie, to tell me what I cannot remember.

It wasn’t until I was pregnant with my son that I requested my adoption file. In Minnesota, in the early ‘70s, families were not required to update their family health histories, but my birth mother had provided additional information when I was finally adopted by my birth parents at 16 months. For $60, the narrative I received was surprisingly detailed.

Your mother was an eighteen (18) year old, single, high school student at the time of your birth. … She was physically described as five (5) feet eight and one half (8 ½) inches tall, one hundred and sixty (160) pounds, with brown eyes and hair and a fair complexion. … Her interests were listed as sewing, reading, and swimming.

It’s strange to think of the two months I spent in the hospital as a newborn. Two months. I was perhaps placed under guardianship of the state and I am bewildered by the idea that I, just a newborn, was no one person’s property. Or no one’s personal property. (Motherhood, I now know, is a state of constant conflict between keeping and shedding. This boy is mine. This boy is his own. My birth mother surrendered.)

Who fed me? A bottle, no breast, I guess. Who took on the responsibility of my safety? Did a nurse think of me when she returned home after a long day of work, when she poured a drink, or tucked her own children into their beds? Who insured that the doctors took great care with my care? Was there an advocate assigned to my case who might consider multiple medical options, to say yes or no, to regretfully but convincingly say, yes, you can do that procedure, if you think it is for the best?

I’d always believed I was born with the infection. In fact, I’m near certain my adoptive parents told me just that time and again, and it’s become my answer anytime I’m asked about my limp, about my scars. “I was born with an infection in my leg.” But Jackie’s letter seems to imply something different, that the bacteria was introduced into my bloodstream, took residence in my femur after my birth, by an errant pinprick perhaps.

One report indicated you developed jaundice and another letter indicated at the time of transfer to the U of M you had experienced sepsis, were premature as well as being diagnosed with osteomyelitis, an infection in your left leg.

I had been so clear my whole life that I’d been born prematurely due to the infection, but with the letter, my understanding of the events around my birth has become slippery. It’s possible my parents did indeed tell me that, but the reality is that anything I know about the first sixteen months of my life isn’t anything more concrete than the messages passed during a game of Telephone.

I was told the doctors were concerned the infection had spread, and I remember also being told they had to test all of my bones, including my skull, for other locations of infection. When I was little, I checked my body all over to find where they might have done the checking, looking for evidence like suspecting an alien abduction. I imagined my head shaved bald; I imagined flaps of skin. Most likely I had needle aspirations. I know that now, but I imagined a greater invasion. I am just thankful amputation was not necessary, which the internet tells me is always a possibility when a long course of antibiotics isn’t effective.

Maybe the when is irrelevant, and it doesn’t change the question I’ve always wondered about: did she know? My mother? It’s safe to assume my prematurity was the source of some alarm, even if my illness didn’t occur until days later. Did she know that her baby might not be well, and did that matter when she made her final decision not to be my mother?

When I was well enough, I was placed in a foster home and named “Lezlie.” Jackie’s chronological rendering of this time is somewhat unclear so it’s difficult to know the order of these two events. I find it hard to believe that I had no name at all before being placed with a foster family, so was it a social worker who named me? Was it standard procedure, to pick a name for the unowned, like assigning Jane Doe to a identity-less and lifeless body, or picking a name for adoptable animals at a shelter? I wonder what it’s like to choose a name for a child who is not your responsibility, to turn that child toward the future with the name Lezlie with a “z”? I wonder what version of myself I might have become had I remained Lezlie?

Via her narrative, Jackie is flattering: “the LSS social worker described you as a “beautiful baby” and that you were doing well in foster care.” And, in a letter dated October 4, 1971 the LSS social worker described you as, “small for her age” but that you were doing well in care and had a “tremendously happy, charming personality for a baby.” Then as now, my seemingly genetic inclination toward positivity worked in my favor. In early 1972, my foster family renamed me Stephanie and planned to adopt me, until their circumstances changed. My adoptive parents would later tell me that the father got sick and the family could no longer keep me. Jackie’s pages tell a different and possibly more tragic variation of the story.

You remained with your first family until August 1972 and then that prospective adoptive family’s situation deteriorated to the point where they were unable to care for you. According to the records, your pre-adoptive father experienced some mental health issues for which he was hospitalized and he then passed away in September 1972.

I feel sad for those people who must have been suffering, suffering at the same time as caring for me (well? not well?), who must have thought I was a good idea until I wasn’t. And what must it have been like for the toddler I was, who hadn’t yet had a family, to have to say goodbye to a mother and father when I was taken away?

Two more foster families cared for me, Jackie reports, until I was placed with my adoptive family when I was nearly a year and a half old. I was told many times by my parents that I “came with” two big black garbage bags full of toys, some with “Stephie” written on masking tape to label them as mine. One of those families must have decided I was more of a Stephanie than a Lezlie. Perhaps that detail of the story was meant to reassure me that I had been loved, treated well, and maybe even spoiled with toys, toys that belonged only to me. (Or were there so many kids in the foster family that we had our designated toys? Did a social worker label my toys when I moved to the next foster home?)

My mother changed my name to Sally because, she said, she didn’t want me to be nicknamed, “Stuffie.” Considering my childhood allergies, she made the right choice. She chose Sally because she had been a first-grade school teacher and the Dick and Jane books were old friends to her. I disliked the name when I became old enough to care as young girls do, resentful that I’d been robbed of a far more interesting name, one with an “i” waiting to be adorned with a stylized heart. (It was the 80s, after all.)

But overall, I was always conscious of the generosity with which my adoptive parents welcomed me, a child whose health issues would be a considerable financial and emotional drain on them over the years. My early illness would manifest itself as an ever-shortening left leg. Had I not had multiple leg-lengthening surgeries — one when I was in 1st grade, a series of operations when I was 10, and a final series the summer before I went to college — my left leg would be somewhere around 6 inches shorter than my right. My father had an 8th grade education and a job with the county; my mother had become a stay-at-home mother when my brother, three years my senior, was adopted at five days old. I wonder sometimes, if they could have predicted how much the lack of money from the hospital bills that no doubt increased with the increasing complexity of my surgeries would press down on our family, would they have taken me in, made me their own, knowing my cost? But then I stop wondering, because there is no question. My parents were good people who were often good parents too, even when circumstances made it difficult for them to be so.

I’ve never had any yearning to look for or meet my biological mother. I’ve always just been thankful to have found a safe place to land, the locus of a pretty typical childhood. And I was lucky to have a mother for the twelve years I had her. It’s like I made a deal with my adoptive parents before I even knew I was signing on the dotted line: you take me in, and I take you in, and we will become us, no take-backs.

Or maybe my lack of curiosity about who my biological mother is stems from a kind of adaptive independence. Maybe I learned before I even knew how to learn, when I spent those hours and days in the hospital, months in foster care, that I would always, in some way, be alone, my own representative. Or maybe I’m afraid of the instant intimacy that may be required of me by reaching out to the woman who birthed me, when intimacy is difficult for me even when earned. What if she doesn’t meet my expectations? Though I suspect the truth lies more in a fear of rejection, or maybe worse, disinterest: I am a middle-aged woman with a special needs child; she let me go once, what on earth could we offer her?

Still, my adoption was never a source of insecurity in the way it was for my brother who often didn’t share that information, even with girlfriends. Being adopted, it seemed to me, meant that I was wanted, more so than that I hadn’t been.

A letter from the county social worker in August 1971 explains your birth mother’s wishes. She was enrolled and planned to attend a vocational school. Further, she did not plan to marry your alleged birth father and therefore, felt adoption would be in the best interests of both you and her.

It’s a decision I think I would have advised her to make if I had been her friend then. Motherhood has been an uncomfortable role for me since my son was born. In fact, I wasn’t sure I wanted children, but I made a choice. I’m unsure now, had I known about Noah’s disabilities early, that I would have chosen to give birth to him. Everyone makes tough choices in the “best interest” of both parties. What would mine have been had I known about the seizures, the hospital stays, the sadnesses. Jackie closes her story with an update from 1973:

It was also learned … that your birth mother had completed vocational school nurse’s training and was employed as an LPN.

I am impressed she followed through. Proud of her, even. I spent a lot of time being cared for by nurses while I was hospitalized, and I’ve spent a lot of time grateful for the care nurses have given my son. I bear her no ill will, only the hope that she had a happy life and no anguished thoughts about the daughter she would never see grow up.

Still, I wonder what happens when a baby has no mother, no father, no touchstone for the first year and a half of life? Did I imprint on no one? Attachment parenting advocates closeness, but to whom was I close? Who did I want to be mine? Who helped me learn to walk? And when I did, who did I want to catch me? How often did I need that which wasn’t there to be given? How does that track down the line of baby-me’s life into my adult life? We are told the first three years of life set a pattern, determine tendencies. I can’t be angry because whatever I am, I am resilient, and maybe that too came from those days when a blanket may have slipped off my baby body and there was no one there to slide it up to my shoulders, tuck it under my hips, and soothe me with a kiss on the forehead.

Now that I’m a parent, and now that I’m no longer young and neither is she, I do wonder if I am my biological mother’s one unanswered question. If she is still alive–only 64 by my count–does she sit, even just for a moment, when the morning light is a certain way and she feels the press of memories, if her baby had the kind of good life she must have wanted for me, if it had been the right decision to say goodbye to the body she had built with her own body, the baby she fed with her own blood, and (I believe) loved in some way, in the right way.

II

Wait

My mother sat beside my hospital bed for nearly five weeks. Each day she arrived early, walking from her bare-bones lodging across the street from the hospital, and idled straight-backed in the room’s lone orange vinyl chair with angular brown wooden arms, held vigil as we waited for the doctors to slowly pull my left leg apart. She absorbed every resentful blow my 10-year-old self could deliver. She tolerated my tears of pain and of boredom, tears of anger at what she was allowing them to do to me and anger at what unfairness I was forced to submit to. I didn’t bother wondering how she felt. Now I know better. Any parent who has ever held her child while he received a vaccination, or a strep test, or stitches in a wound, knows the anguish, the exhaustion, of cooperating or being complicit, in the infliction of pain. I have no recollection of being empathetic enough to imagine she felt anything at all as she made impossible decisions meant to make me better while also making me cry.

An infection in my femur caused my left leg to grow more slowly than my right, the whole leg like some undernourished conjoined twin to my sturdier right leg. This procedure–to split the bone and attach an “apparatus” to the outside of my leg via pins inserted through the skin, like a dock pillared into water and sand, that was then cranked apart millimeter by millimeter each day until the space between the two separated sections of my left femur grew to 2 inches–was rare in 1981. It took over a month of minute progress to allow my skin and muscle to acclimate to the forced growth. The end goal was a scary proposition for me: another surgery, this one to remove bone from my hip to graph into that gap in my left leg, and for plates to be placed along the bone to keep the graph in place until my bones accepted and assimilated the new addition.

So we waited, my mother and I, for my leg to be stretched, my split skin to mend just to be opened again, skin cross-stitched with black thread like something pulled from the embroidery skeins she brought to my room every day. A crafter and knitter, my mother didn’t often do embroidery, but this needlework was portable and complex, perfect for the minutiae of a long hospital stay. Just a hoop, a square of cloth, limp figure-8s of glossy thread, needles, wooden darning mushroom.

I spent much of those weeks in a large wooden reclined wheelchair, because I wasn’t allowed to sit up, warding off boredom in the children’s lounge doing arts and crafts, eating microwave popcorn–that futuristic 80s treat!–in the dining lounge, neglecting the homework the teachers sent, watching the day’s soap operas, but also wanting my mother to let me take a turn with her embroidery hoop. I so wanted to try my novice hand at the delicate work she performed at my bedside, but she wouldn’t allow me to try, to make a mistake amid her tidy stitches.

It was a large and tricky project, an intricate Christmas tree, and each ornament was a different type of stitch. She had to teach herself each one from the instruction sheet. I remember silver knots like those metallic decorative candies we are no longer allowed to eat. I remember gold threads layered, criss-crossed, to create stars. There was a patchwork puppy in a gift box under the tree, a nutcracker soldier nestled in the branches, and a yellow-haired angel on top. Each night, readying to return to her guest room, she would tuck all of the embroidery paraphernalia back in a worn plastic bag. When she rose from her chair, a cut in the orange vinyl seat was revealed, like a wound that was covered with her presence but opened again each night when she left.

But one morning, she didn’t return to her chair near my bed. My father arrived instead, told me she’d had a heart scare and been admitted to the hospital herself. It may have been a true attack–by the time she died two years later, she’d had several–but at 10 years old, I didn’t understand, or maybe I didn’t want to understand because all I wanted was my mother to be there, in her chair, paying attention to me, paying penance for my pain. Instead, I was the one left waiting to visit her. Maybe my father, or maybe a nurse, occasionally pushed my wheelchair to the third floor of the same hospital to park next to her bed, but I rarely stayed. There was no arts room on her “adult” floor, no colorful smocks on the nurses, no distractions to speed the minutes.

I don’t remember how long she stayed in the hospital, but I managed the rest of my own treatment without her presence by attaching myself to a variety of nurses or candy-stripers like I had attached myself to the teen neighbor-girls who babysat my brother and me at home. I often visited a little boy who had been badly burned. His toddler body was covered in white bandages until they were removed, revealing his brick red skin, shiny as a newly polished floor. He had curly strawberry-blond hair, so sometimes he looked like he was still on fire. I don’t remember his family visiting, his mother sitting vigil as mine had. I was drawn to him, maybe to my own feelings of nobility when I persisted in staying in his room while he cried, which was most of the time. Or maybe I just stayed to witness, finally, a pain greater than my own.

Nor do I remember how sick my mother was when I finally arrived home, miserable in a body cast on my left leg, from waist to toes, during the hot summer. Because of my discomfort and her wavering health–small dark bottle of nitroglycerin always at hand–, my father had air conditioning installed. I wonder now where he got the money to do that when there was never any money to be had. My mother and I had used it all up, trying to get well, be well. But our relationship never recovered. I wanted her to be the mother I wanted, not the one I had. I wanted my life to be the one I wanted, not the one I had. I continued to rage about all the unfairness inflicted upon me. I didn’t know then that my anger was actually my fear.

I was ten that summer when we were both in the hospital at the same time. Then I was 11, then 12, and then she was dead. The last time I was at her bedside was the day before she died. That heart attack had been severe. I suppose they knew. The doctors. Maybe my father. There was nothing they could do. The diabetes she’d developed when very young had taken its toll on her organs so none of the preventative measures to elongate her life could be executed. My brother and I were ushered into her hospital room, and I’m not sure what I expected except that I’d imagined I’d be able to sit next to her as she slept, grasp her hand in mine and wait until she woke like I’d seen in soap operas.

Instead, her bed was raised high, almost arm-pit height. It was no ordinary hospital bed like the ones I’d resided upon. And around her were machines on wheels, tubes and wires strung this way and that like a particularly knotty game of cat’s cradle that kept me at arm’s length. I could barely reach my mother’s hand. There was nowhere to sit. There seemed no reason to be there after only a few minutes, because truthfully, I may have sensed she wasn’t there either.

How long had she been heart-sick? I don’t mean medically. I mean, how long had she known she was likely to die before she could see her children grow into adults? How did she live with the knowing, the waiting? I couldn’t understand when I was young why she was always so thin-skinned. She would fall apart in an instant over nothing. Over my brother and I sparring over what TV program we would watch. Over my dislike of the dinner she had cooked. Over my rude disdain when I came home from school and she asked how my day was and I refused to tell her.

My mother had been older than my peers’ parents and retained a kind of formal idealism that women who lived through a war and believed in God and country and well-behaved children. I still remember so much about her. Her perfectly oval fingernails, the cotton-candy swirl of her brown curls, a fine covering of freckles over her forearms, her small straight teeth and the smell of her breath after her morning coffee. And I carry that plastic-framed embroidered Christmas tree into every apartment and house I have ever lived in, as well as the sense that, unlike the picture, there will always be something started but left unfinished about my childhood.

By the end of my tenth summer, my skin had healed, pale railroad track scars laced my leg, and my bones had knitted themselves back together. Now, at 46, many scars of varying lengths and shapes still graffiti my lower body from the many additional surgeries I would undergo, many of them without a mother to sit by my bedside. The doctors reassured me each time that as a result of all the bone-knitting, my left leg would be even stronger than before. I suppose that’s the theory of hearts as well.

III

Want

12/2/2014

Dear B,

I’m sorry it’s been so long since I’ve written. Noah had a bad November. And that means we all did. On the 6th, he had a seizure when he came down with a bad cold virus. I could tell that afternoon that he was getting sick, and seeing what I saw, I should have given him the Clonazepam he’s been prescribed to prevent him from having a seizure. But I didn’t want to pull the trigger.

I don’t know why I have such a difficult time giving him the medication. How is drugging my child to prevent a seizure any worse than drugging him to stop a seizure? Maybe I don’t trust my own instinct and the seizures force my hand. That way, I don’t have to choose; I just have to do. Any way I look at it, I’m complicit in him having had a seizure, the thing I want least.

A trip to the neurologist and we likely have a new seizure type to add to his many others. The doctor is pretty certain he is having drop seizures, which are bad. Bad, because they are hard to understand and prevent, and dangerous because they are so sudden and unpredictable. There are so many sharp corners in the world once you start looking for them. So the plan was: interrupt the new seizure habit that his brain was forming by putting him on a load of that Clonazapam for 3 days, and then taper it down over 6 days. That might be enough to “reset” his brain. Who knew such a thing was possible?

Noah’s epileptologist, once he read the PA’s report, was so worried about Noah that he found him a bed in the neurology ward. So we are in the hospital now. They will do a 24-48 EEG and after we will talk seriously about inserting a VNS (a nerve stimulator) under his arm, which would act like a pacemaker of sorts to interrupt his seizures without medication. There’s a part of me that would be relieved to have a non-medication-based solution to his seizures; there’s another part of me that feels like once we go down this road, we admit to some kind of failure, a failure of conventional control methods.

12/5/2014

The test results, as always, were inconclusive. The EEG didn’t show evidence of anything new or causal, and the follow-up MRI was normal, so now we look at adjusting his drugs. A new hypothesis is that the polypharmacy–three seizure medications, not counting the emergency Clonazapam–is impairing him. Generally speaking, seizure disorders and epilepsy are best treated by monotherapy, while polytherapy has been shown to improve control in only 10%. So we are going to start a bridge med (4!) called Onfi while we begin to reduce the Felbamate (that I never believed was helping anyway.) They offered to adjust his medications in the hospital more quickly over just three days, but we couldn’t bear the thought of inciting seizures by ripping the proverbial Band-Aid off. Instead we will do a 6-week wean at home. How can we possibly know what’s right? We can’t. It’s an experiment with our child’s brain which offers us no right answers beyond our best effort. It’s best not to think too hard about the fact that no one, not even the specialists, know what to do to help him.

Neuro meds are always an experiment. Or so they keep telling me. All people process meds at different rates, and all meds interact differently when put into play with one another. I want answers but there are none to be had. In Noah’s case, because there is no known cause of his symptoms, it becomes even more difficult to find the right approach. As one doctor puts it, the door to seizure prevention is locked and you need to try a lot of different keys to discover the right one to open it. So it is possible to change Noah’s meds, no matter how many, nor how effective for other children, will not gain us control, the one thing we want most.

12/27/14

A twist to the tale. Noah has been admitted to Children’s Hospital Intensive Care isolation unit. They now think he has Nontypeable H flu with pneumonia, but when we first arrived at the ER they suspected meningitis. We’ve been struggling with Noah’s seizures and medications and health all winter, but things took a turn for the worse the week before Christmas. It was hard to discern just when or how he’d become so sick, but we’d resorted to syringing liquid into his mouth, hoping to keep him hydrated, thinking he’d rouse if we just tended to his symptoms and waited. We stayed home for the second holiday in a row. For a kid who loves presents, he couldn’t muster the energy to open his gifts.

His vitals are stable and they are getting fluids and antibiotics into him, and hopefully food via a tube in his nose. He’s still unresponsive, however, so that’s worrying. The tests they do to stimulate a reaction–pinch his fingernail beds, run a sharp point along the bottom of his foot–aren’t doing anything. He doesn’t even flinch. One of the ER doctors looked at us after ordering a number of scary tests, including a spinal tap, “You do realize that your child is very, very sick?”

12/29/14

We’ve agreed to take him off all his seizure meds, because the Critical/Acute care people suspect he may just be a kid particularly sensitive to “benzos”–the Onfi, the Clonazapam, and even the Diastat we use in seizure emergencies–and may be causing his lack of alertness and the impression of his being sicker than he actually is. The neurologist isn’t in full agreement, but I’m inclined to believe the people who are looking at Noah’s full self rather than just looking at his brain. I continually have to remind myself that we are good parents even when it seems our decisions were putting him in danger instead.

12/31/14

A new year, more of the same–Noah sick, me struggling–, yet more difficult because he’s not himself. He is weak and listless, and not my son. I’m overwhelmed today. The sadness. Tears come easily. I feel as though my hands have been amputated. I want to put them to work to help Noah, but my efforts are completely ineffectual; there is nothing any amount of mothering can do.

1/5/15

Stabilized. He will probably be in the hospital for another week. I’m on my way to New York for work. I can’t believe I’m leaving him, and yet, isn’t this what I have learned over the past 10 years? To live as though I don’t have a dark shadow following me around everywhere I go? One of the hardest parts of suffering is suffering over the suffering. At some point, you have to turn it off, cap the faucet, cut the wire.

1/18/15

Noah is still in the hospital. Day #23. He will be having surgery Thursday to put in a G-tube. The pediatrician at the hospital thinks she’s figured out what’s at the bottom of Noah’s decline: it wasn’t a new type of seizure; it wasn’t the medications; maybe not even the severity of the flu; he has been malnourished. His weakness, and those episodes they thought were drop seizures, may have been because he didn’t have enough calories. So all that extra dosing of the seizure meds? Likely unnecessary. Though maybe it made him too lethargic to eat, unaware he was hungry. I cannot help but wonder what kind of mother I am to have drugged my child to the point of starvation. What kind of mother am I that I have been unable to adequately feed my child or identify it as a problem?

So we agreed he should have the surgery, have a hole put in his belly, carry that scar for life. But if that eases the strain of giving him medication by mouth when he’s sick and provides him with the nutrients he is missing, then it’s the right decision. I think. I hope. I’ve said no every time a G-Tube has been suggested before, and now I don’t even remember why. I sit here and watch him sleep, so small in the middle of his hospital bed like a pearl in an oyster, and I feel utterly incapable of meeting this moment. And yet, for the first time, I believe I will. Because I finally understand something I’ve fought against since Noah was born: this is the life I have, this is the kind of mother I am required to be, and I’m not going anywhere.

Moments of Impact

After Hiroshima dead bodies were found of people who had been wearing printed kimonos when they were killed. The bomb had melted the cloth on their bodies, but the design on the kimonos remained imprinted in the flesh. It seems to me in later years the deep nerveless passivity of that time together had become the design burned into my skin while the cloth of my own experience melted away.

Vivian Gornick, Fierce Attachments

Some say they remember where they were, what they were doing, when Kennedy was shot. Of course that means they remember where they were and what they were doing when they first heard Kennedy was shot. Some say the same about Lennon. I seem to recall being at Clayton and Maxine’s house, friends of my parents, staying over because my parents were out of town, when Elvis died. I can’t be sure it was Elvis, but I’m pretty sure it was. And I don’t think I remember that moment because I was any particular kind of Elvis fan, but instead because I didn’t understand why this was a big deal. To me, Elvis was only the Elvis of the sparkly white jumpsuits and ridiculous dark glasses; I didn’t understand Elvis as a cultural phenomenon. I didn’t understand that Elvis had changed everything for an entire generation. But my parents’ friends were struck, and I thought I should be too. It was the dissonance of the experience that makes me remember that moment.

I remember being in the band room of my high school when I first heard about the Challenger blowing up in the sky. Perhaps I only remember it because Sally Ride was another Sally, but I think that I remember it because I felt staggered by the realization that the brave were sometimes the least safe.

When OJ took his white SUV on the run, we crowded around a small television set usually reserved for important sports events at the insurance brokerage firm where I temped. At work, where I made copies of documents and then filed those copies, OJ was water-cooler fodder and a spectacle that brought us together for days, weeks, months, with the denouement so deflating it seemed to diminish just how new and bizarre it was to watch news happen in real time.

I had just walked into the gym the morning of 9/11. Instead of running on treadmills, or stepping on ellipticals, or hefting and dropping weights, the people in the gym that morning were standing still and staring up in silence at the silent televisions broadcasting a tower’s collapse. Rebroadcasting the moments of impact. At first, I thought it was a movie. I thought soon Will Smith or Bruce Willis would appear.

Why I remember those events from the past is anyone’s guess. Some events are so dramatic, the impact clears the every day clutter from your head and stamps itself like a brand on your memory. Other events just joins the messy brigade of thoughts marching and encamping throughout the day, denying those moments the time to take root in the soil of memory. I can’t tell you what I was doing when I first heard that Katrina hit New Orleans, when the earthquake hit Haiti, or a defective reactor poisoned the people of Chernobyl, Japan or Three Mile Island.

Seemingly solid memories bleed and reshape like oil drops in water. Tip your brain one way and the memory will elongate; close your eyes and you can drop yourself down in the moment, but it’s a bit like Marty McFly or Quantum Leap: so little control once you project yourself there. When I picture myself in the band room, in the brokerage firm office, in the gym, I don’t move and I don’t react. I only see. Maybe because if I move, I will affect history like any good sci-fi movies warns of, or I will cause the memory to shift and it will never regain its former shape, or I will peer too hard and the clearly drawn edges of the memory will become amorphous and I’ll begin to doubt everything I once thought I knew.

My mother often told the story of announcing to my father they had been approved for an adoption and would be receiving a baby, my brother, by posting the news on the red brick silo just behind our garage. When I think on this now, I simply cannot believe it. How my mother would have posted a sign that big that high-up defies any kind of logic. She would have needed a lift truck to do the deed, but in my mind, that memory of her memory persists.

I was in Mr. Buck’s 7th grade English class when someone came to the door to pull from class and tell me my mother had died. I remember it being our pastor at the door. I would imagine he had been brought there by our principal but I can’t remember him there in the moment. I think we sat in the principal’s office because somewhere in the school my father waited for me after the telling, but I’m not sure. My mind’s eye can’t see the room, can’t remember the first hug. I do remember sitting on my father’s lap in the front seat of the pastor’s car–nicer than any of ours, I know–as he drove us home, leaving my brother at the high school as he was unwilling, my brother, to let the news impact his regular day.

I can’t remember how I learned that my father had died. Maybe my brother and I were exchanging phone calls? Maybe someone from the hospital called me? How can I not remember that? But I do remember coming home (from the gym? from a tennis match?) and listening to a message on my answering machine (from my aunt? or my uncle? a message from either would have been strange as I hadn’t spoken to either of them in at least a decade) telling me my father had been taken to the hospital via ambulance. I know he lived, in a coma, a few more days. I know I didn’t travel to Minnesota to see him. I don’t remember why not going seemed the best option.

Other news also came on like a slow burn of a ditch fire, carefully watched, but somehow still wild. My son’s disabilities revealed themselves like drips into a bucket that fills surprisingly fast and overflows with a gush. By his first birthday we knew that he was not the child we’d dreamed of having. For the next three years I would fight against that reality, trying futilely to cup the water in my hands and put it back into the full bucket.

My husband’s leukemia took months to diagnose. There was always something else it could be. It was exhaustion; it was cluster headaches; it was a virus. The other possibilities were ludicrous as few suspect cancer in an otherwise healthy, downright robust 48 year old man, despite most of us worrying ourselves over cancer every day. Leukemia. Blood cancer. White blood cells gone rogue.

And maybe because it was just months ago, but I remember the moments with calm clarity. I remember sitting at home, thinking it could be leukemia. I remember telling myself that the most devastating thing is often the least likely. He texted me that they were doing blood dialysis to reduce the number of white blood cells because he had far, far too many. But no, he said, he didn’t know what that meant. It took me a couple of hours to get to the hospital. I knew he was sick, that he had been sick, that he hadn’t been who he usually was for many months. But I didn’t expect to see him stripped and bloated on the table, multiple tubes like computer cables running to a churning machine from a port in his neck, his skin blotched around the injection site with stains of dry brick red blood. Each of the tubes were removing blood from his body, pulling his blood into the machine, separating and hoarding the white while returning the red. I stopped dead at the doorway. He turned to me, knew what I was seeing, and said, “I’m sorry, honey.”

And I think that was the moment we both knew. Even before the technician from the blood center let the word chemotherapy drop from her mouth, before any doctor had warned us of the possibility, or rather, the necessity of treating his cancer immediately, no choice in the matter. The gravity of his words, “I’m sorry,” crushing the hope that anything from this point on would be easy. No, what had already been hard would now become harder. The load would be heavier and the direction of our life together less clear.

The word cancer makes people think of death. So does leukemia, though there are many stories we hear about people who have been cured with much hard work, by the doctors, by the sick. My husband has always been a strong man, a hard worker who has defined himself to himself by putting hand to the proverbial plow. He is two months into what will be the two years of the hardest work he will ever have to do. I choose to believe his body can withstand the impact of the blows. I choose to believe that his will can insure the result. I can only hope my heart’s scars have formed a strong enough infrastructure beneath the minute fractures to keep me from crumbling from each upcoming strike.

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.