Stephen Hawking and The Ghost Boy

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Stephen Hawking. Photo by NASA

I’ve been thinking a lot about communication lately. I just finished reading Ghost Boy by Martin Pistorius. It’s the story of Martin, who succumbed to a mystery disease when he was a young boy that put him into a coma for two years. When he “awoke,” he was unable to speak or move any part of his body other than his eyes and some minimal movements of one hand. It took years before someone was able to assess him for brain damage and fit him with a computer device that enabled him to communicate with the world and everyone was shocked at how much he was aware of and understood during the time he was mute and paralyzed.

I have to say, the book wasn’t my favorite, literarily-speaking, but it did spark a lot of thought processes in my head.  And ultimately, it led to me watching The Theory of Everything last Friday night. I have loved Stephen Hawking’s brain since I first read Black Holes and Baby Universes for fun in high school. (Yes, I was that nerd). I went on to read “A Brief History of Time” and was completely hooked.  His story was different, in that people knew he was brilliant before he began struggling with the symptoms of ALS and could no longer speak or take care of himself, but I was still fascinated by how heavily verbal communication weighs in our assessment of each other as human beings.

I remember when my grandmother was rendered mute by Alzheimer’s disease. Although she had been increasingly confused prior to that time, it was still confusing to me whether or not she understood the lion’s share of what was going on around her. I recall thinking that I would go crazy if I were trapped inside my own head and body, unable to respond or make my needs known.

As a young mother, I recognized my infant’s frustrated cries as just that – a desperate longing to tell me what she wanted and to have some control over her world.  Fortunately for her, normal developmental progression let her gradually gain that control. But until she could, I had to change my response to her by listening in a different way, paying attention to her body language and context, the time of day and where her eyes moved. I had to trust that she was doing her best to communicate with me and it was on me to slow down, change my expectations, decipher the clues.  When I came from a place of love and genuine desire to know, while it was often challenging and crazy-making, I was able to be more patient.

Some of the stories Martin told about how he was treated by caregivers in various care homes were horrifying. The lack of humanity he was shown simply because he was unable to speak or move his body the way he wanted to made me sad. And it made me think about how often we expect others to communicate with us in the ways we are accustomed to, instead of thinking outside the box. Fortunately, there are those out there who are committed to finding ways to help people like Martin and Stephen Hawking express themselves.  As for me, the next time I encounter someone who doesn’t communicate exactly like I do, I hope I’ll have the presence of heart to slow down and find another way to listen.

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Less Random Monday Thoughts

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Elizabeth posted this comment on yesterday’s random thoughts in response to my words about condescension:

“The more I think about it, though, the more I am convinced that the particular people I wrote about are never going to budge. That doesn’t depress me as much as it makes me realize that it’s not about vindication and that I will move forward even as they stay put. “

Yes. It isn’t about vindication at all and, if it was, we are all likely to remain incredibly disappointed by those in power who are not interested in shifting the dynamics.  For me, though, it is about being heard.

I am just naive enough (or maybe it’s idealism – I’ve been accused of both) to think that when someone invites me to be part of a conversation, they are actually open to hearing what I think. In the case of the meeting with the Surgeon General a few weeks ago, I was also naive/idealistic enough to think that it might really be a conversation, a dialogue between him and the parents in the room, but it was more like a transaction, a sales call where he showed up saying he was interested in what we wanted and ultimately sold us the only thing he had brought to sell – his canned comments and rhetoric. I don’t believe there was ever anything else on offer besides an opportunity to sit in a room and say his piece. Given the number of times he was asked a question that he failed to answer at all – instead steering his words toward another subject altogether – I am convinced that there was some preexisting agenda that included the rest of us as simply warm bodies to receive his message.

That, I am not interested in. I don’t want a transaction, whereby I simply sit passively and receive the information others want me to receive. Nor am I interested in vindication – some magical moment wherein the folks in power have an epiphany and shout, “You’re absolutely right! We should have seen it all along!” as they hang their heads in shame. That might feel really freaking amazing in the moment, but ultimately it doesn’t do anything to – as Elizabeth says, “move (us) forward.” And it doesn’t do anything to alleviate the frustration and/or suffering that came for years as I tried to get anyone to listen.

Last October when I was in New Mexico with the likes of Alice Walker and Gloria Steinem, someone said (I think it was Gloria, but I honestly can’t remember), “If you want to stop someone in their tracks, tell them you don’t believe them.” Yes. But, I would add, it is even more powerful to send them the message that you aren’t even interested in hearing them. And that is the message we get when these kinds of events are scheduled, ostensibly to hear various perspectives, and the only stories that are allowed any oxygen are the ones that have been told over and over again. This is a tactic that has been used for decades – deny that there is a problem. Pretend that those voices that tell a different story belong to folks who aren’t smart enough to really know what they see/feel/experience, or that they aren’t important enough to pay attention to and they will eventually go away or start questioning their own sanity.

The difference these days is that we have other ears. Social media has given us the opportunity to find others who are telling the same stories and band together to raise our voices. If we can’t have a dialogue, at least we can change the venue a little. Instead of continuing to hit our heads against that brick wall that the powers-that-be have put up for us to write our protests on, we can turn around and go somewhere else where we will be heard. We can validate each others’ perceptions and continue moving forward, with or without them.

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Random Sunday Thoughts

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On self-awareness and how much I love it when my kids have it:

 – Lola got some sad news yesterday that her beloved mentor is moving to the East Coast. I braced myself for her reaction, given the fast, intense friendship the two of them developed that quickly grew into a foursome with her mentor’s partner and Eve. I knew this was going to be a tough pill to swallow. When she gave me the news, her face was so sad and I had to remind myself around the lump in my throat that the best thing I can do is follow her lead and hold space for her.  I hugged her tightly and offered to hang out with her for a bit, but she declined, saying, “Nah, I’m just going to go upstairs and be sad for a while by myself. Thanks.” It sucked for me because I want so badly to soothe her feelings, but I love the fact that she knows herself well enough to make sure she has space to just sit with them for a bit.

 – After a busy weekend including one sleepover on Friday night and a matinee of Mamma Mia on Saturday followed by a dinner out with a girlfriend, Eve came down to lunch today and announced that she was putting her phone on “airplane mode” for the rest of the day so she isn’t tempted to answer texts or check social media. She has too much she wants to get done. Hallelujah!

On condescension and unsatisfying “conferences” or “town hall events:”

 – A few weeks ago I was invited to be in the room with the Surgeon General and MomsRising constituents to talk about the recent measles outbreak and vaccines.  I was told that I would be one of only a dozen or so folks in the room and spent the weekend doing research and polling friends so that I could go in prepared to advocate and ask the kinds of questions that get past the hype and rhetoric. I was, in fact, one of only a handful of people in the room, but it turns out that this “meeting” included nearly 12,000 other phone-in audience members and, as such, we were relegated to asking questions via index card without any opportunity to follow up or challenge misinformation. I later discovered that the Surgeon General was on a country-wide tour of cities with the lowest vaccination rates in the US and I suspect it was more of a PR stunt than any real opportunity to have dialogue with folks about their actual concerns.  (To wit; when MomsRising did real-time polls of the 12,000 people online, they discovered that only about 35% of them were concerned about the measles outbreaks in the US and that more than 50% of them are concerned about the safety and efficacy of the MMR vaccine.  He did nothing to address either the media hype or the actual concerns people had.)

 – It makes me crazy that my experience was not very unusual. Elizabeth writes here about an epilepsy conference she was invited to as a parent who could share her unique perspectives with medical professionals and other families where she was condescended to as someone who is not a medical professional (duh, that’s the point) and not given the airtime she deserves.  I wonder how much the organizers of these events pat themselves on the back because they think they’re providing opportunities for sharing of diverse perspectives. I wonder whether they realize that what they are really doing falls so far short of that it is laughable (if it didn’t make me want to shout and cry, instead).

On priorities:

 – I had a great phone call with a friend on Thursday that reminded me how important it is to occasionally revisit the things I do on a regular basis with an eye toward whether or not they still “feed” me. On any given day, there are a number of things on my to-do list that I don’t particularly love doing, but I also have a tendency to get sucked in to doing bigger things that fall in my lap one way or the other and become part of my routine. It’s really easy to just keep plugging along, putting them on my list week after week without stopping to ask if I still enjoy them. And if there is an overwhelming number of things on my list that drain me, I have to also remember to populate the list with a few things that replenish me. On those days, a 30 minute power nap or a walk with a friend or sitting down to read a chapter of my book is just as important as everything else.

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The Fallacy of Belonging

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 For
the nine months that my daughter grew in my womb, I was under the illusion that
she was mine.  I don’t mean mine in the sense that she shared my genetic
material. I mean I believed that she belonged to me.

be·long  [bih-lawng,
–long]Verb phrase belong to,a. to be the property of: The book
child belongs to her.

          My
husband and I had knowingly, purposefully created this child.  She was
housed in my belly. I was constantly reminded that everything I did impacted
her tiny, developing self in a big way. Get enough sleep. No soft cheeses. No alcohol.         
         In the beginning, my fertilized egg was simply dividing, making copy
upon copy of the DNA my husband and I provided.  By the time that miniscule
ball of cells lodged itself in the side of my uterus, it had morphed into a
core of embryonic cells with a protective shell.  A blastocyst. My
daughter had formed her first layer of defense, a shield to insulate her from
the outside world before that little pink plus sign even showed up on the
plastic stick.  I was blissfully rubbing my belly, reading parenting books
and feeling a sense of union with my child.  I was picking through the
list of our traits like a bowl of cocktail nuts, gently pushing aside the
too-common peanuts and the over large Brazil nuts, concocting the perfect
little person in my mind.  Please
let her teeth be naturally straight
like her father’s. Please let her
have eyesight like mine. Have his strategic mind and my compassionate heart,
little one. I wasn’t thinking
about the fact that her most important job from this moment forward would be to
separate, differentiate, become an individual.
         My first inkling
that this child might have ideas of her own came in the middle of the second
trimester.  She shimmied and shook, danced and cavorted inside me, pushing
against my flesh in a gymnastics routine of her own design. No matter that I
was trying to sleep; she was making herself known. Within a few weeks, she
began demanding fresh pineapple and German pancakes.   The burning in
my gut was unlike anything I had ever known and I developed a pack-a-day Tums
habit just to cope with her cravings.
         I went into labor
with my little girl sitting posterior in my womb, her head pressed firmly up
against my tailbone.  While I writhed in back labor, two doctors worked in
tandem, kneading my belly like so much bread dough, pushing and pulling to turn
her into a position where she could be safely delivered.  With each
subsequent contraction, she calmly somersaulted herself right back where she
had been before without regard for the work or pain she was creating.  Tenacious
and precise, this little one was delivered after 40 hours of labor on her due
date in the posterior position.

be·long  [bih-lawng,
–long]Verb phrase belong to,b. to be a part or adjunct of: That lid
child belongs to this jar her parents.

            When that miracle of
flesh and blood and hair and breath and wonder slid out of my body and the cord
was cut, it was hard to determine where I left off and my daughter began. 
She looked exactly like I had on the day I was born – skinny and long with
feathery black hair and olive skin. On the counter at home, our baby photos sat
side-by-side, astonishing in their similarities.   It was easy to
believe that she was a miniature copy of me. 
         And yet, this
distinct, wholly formed creature had emerged from my skin firmly ensconced in
her own.  She had driven the birth process just as much as my body had and
the abrupt deflation of my taut belly mirrored the slump in my spirits. In the
instant when she was free of the birth canal, I felt simultaneously exhilarated
and bleak. I had lost the miracle of us-ness, but was thrilled to meet my
child. The many months I had spent conjuring possibilities for this baby – boy
or girl, small or large, somber or goofy – were now moot. She rested on my
chest and our eyes met. Electricity resonated between us, the depths of which I
could not possibly fathom. 
         From the instant my
daughter was born she began to assert her independence in a multitude of ways.  She went from needing me to breathe and
eat for her to — whoosh — breathing, sucking, pooping.  She ate when
she was hungry, slept when she was tired, refused to conform to any schedule I
attempted to impose.  
         For weeks after she
was born, I felt phantom kicks in my belly.  I recalled my impatient
anticipation of her birth in those last few weeks of pregnancy at the same time
that I mourned the loss of our basic, elemental union. I began to realize
that parenting is an exercise in opposites. The crashing together of the two most
profound human emotions: love and fear, produces an energy like no other. The
pure, golden light of mother-love was quickly tainted by the crushing
realization of responsibility.  The sudden dawning that no class could
prepare me for the weight of each and every decision made on behalf of this
helpless human was accompanied by the solid weight of warmth wrapped in a
flannel blanket in my arms.  I wanted to spend every second gazing down at
my daughter, consumed by the sight and smell and heft of her. 
          My
all-consuming adoration was tinged with pangs of absolute terror every single
time I held her, touched her, looked at her ruddy cheeks or her tiny toes. That
explosive burst of love existed side-by-side with the metallic ache of fear;
the joy of having this thing I loved so much and the possibility of one day not
having it.  

be·long  [bih-lawng,
–long]Etymology, word
originmid-14c., “to go along with, properly relate
to,” from be- intensive prefix, + longen “to go,”
from Old English langian “pertain to, to go along with,” of
unknown origin.

          More and more, my
daughter began to assert herself as I simultaneously celebrated and lamented
her fierce independence.  I struggled to put limits on her, as much out of
fear for her physical safety as well as some fuzzy notion of what a parent was
supposed to look like and yet, I proudly recognized myself in her.  Her
sense of priorities, her stubborn determination to conquer any challenge she
deemed worthy of her attention, those hit a familiar chord.  I identified
with her and again, blurring that line between the two of us as surely as if I
were reattaching the umbilical cord. 
         I watched her
methodical attempts to walk, pulling herself to her feet, shimmying along the
couch, practicing standing in the middle of the room to catch her balance. For
days she seemed on the verge of walking, but she wouldn’t take a step until she
was certain, standing and waving her arms one day, standing and clapping the
next.  I do the same in yoga, starting eagle pose by entwining my arms and
fixing my gaze before ever lifting my leg to wrap it around because I don’t
want to fall.  Two weeks after she had begun perfecting her standing
balance, Eve took off walking. She never fell.  I took credit for whatever
part of her that had driven her to do it that way.  That was me.
          I had the solid
notion that this child was a part of me, like one of the rays of a sea star,
but she was never that. I was fooled by our similarities into believing that
who I am determines the person she will be, the person she ought to be.
 When Eve works hard at something, shows true generosity, laughs in a
certain way, I see myself.  When she is hateful or selfish or ignorant, I
take responsibility for that, too.  I worry that I have done something to
create that, as if there is a dark spot on my DNA that wormed its way into
every cell of her body.  I worry that I will be judged for her mistakes
with the same fervor that I am praised for her accomplishments. In those
moments, I believe that sharing my DNA means that she belongs to me in the most
elemental way.
————————————————————————————-        
         My father was a
fierce disciplinarian. My siblings and I paid dearly for our mistakes and I
often wondered why he treated us so harshly.  I know now that my father’s rage came from a place inside
him where he confused my behavior with his own self-worth.  A Marine whose
own childhood experiences taught him he could never be good enough, he was
desperate to mold his children into something he could be proud of, something
he could show off to others.  He longed to line us up like shiny gold cups
embossed with his name, to somehow redeem himself for his own shortcomings. We
did feel as though we belonged to him, that our behavior reflected on him and
defined him to some extent.  We
were his legacy. I spent too many years of my life trying not to disappoint Dad
instead of forging my own path. And during the times after he and my mother
divorced, when she would yell at me, “You’re just like your father!” I would
cower in shame.  She hated him more
than anyone. That must mean she hated some part of me that I could never be rid
of. 

          But
I am not my father any more than my daughter is me.  From the moment Eve
was created in a heady mix of genetic material twined together in a way that
could produce only her, our daughter embarked on a journey of actualization.
She is not simply a combination of flour and water and chocolate and eggs; some
cake that turns out the same way every time. She is something more.  That
fact both frees me and frightens me.  I am tasked with building and
minding the levees of her childhood, much like a womb in the world until she is
ready to break free, but how she swims in those waters is hers to
determine.  The truth is, she never belonged to anyone but herself. I am
simply given the gift of watching her navigate her own journey. 
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When A Shortcut Isn’t Worth It

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The human brain loves a shortcut. Maybe not as much as my Dad did, driving through the rural back-roads of Oregon, but pretty close, I think.  The look of pure satisfaction on his face as he turned in the opposite direction that we expected him to, the glee when he discovered a different route that would shave minutes or seconds off of our trip, it was a thing to behold.  Cheating the system, cutting a corner, figuring out a pattern and exploiting it – that was the stuff of legend in our household and always good for a cheap thrill.  I took notes as a kid, and my brain followed suit, laying down a nice flat steamrolled bed of gravel and pouring some asphalt over the top of it. Streamlining the process for the next time and feeling smug that I had discovered a better way, a faster way, a more efficient way to deal with all sorts of things, not just how to get from Point A to Point B.

After a few times of traveling that new road my brain laid down, it increased the speed limit for me. How nice, I thought, I barely even need to think about this anymore. It has become reflex to react in this particular way to this particular set of events. And, often, it was nice. It was time-saving. But when I got to the point where I could navigate those paths blindfolded and in my sleep, I forgot that they were crafted by a child.

When I was a kid, my brain laid down a path to being okay with people leaving. Forged over the span of a few years as some pretty critical folks peeled off and left, it gave me a way to shortcut the hurt whenever I suspected someone else was about to go. I used that road for a long time, and I got really good at it. The signage on that road went a little something like this:

GO AHEAD. I’M FINE.

and

I’M DONE WITH YOU, ANYWAY.

Long-time readers may recall that about ten years ago, Bubba was really sick with some mystery illness. He was in and out of the hospital every few months for days at a time and it took many doctors over three years to figure out what was wrong. But in those three years or so, he did his level best to keep on keeping on in-between episodes, continuing to travel internationally for work and provide for the four of us. This meant that on a few occasions, he would fall seriously ill in a foreign country and I would get a phone call in the middle of the night – from Prague or China or somewhere that felt really, really far away.  That path went from a foot-worn deer path in my brain and heart to a full on superhighway.

GO AHEAD. WE’LL BE FINE.

When he was home, I was guarded but loving. Affectionate and caring but ready to pull away just in case.  As if that shortcut would circumvent the deep wellspring of despair I would have plunged into had anything happened to him. As if I could distance myself enough emotionally to be able to just carry on if he were gone for good.

And yet. That shortcut beckoned. My brain saw that path as the well-lit one studded with diners and rest stops along the way and it was so well-traveled that I could barely discern the other road off to the side.

These days, I’m working on creating a new path. As Bubba readies himself for another long trip and Eve pulls away more and more in search of a new kind of independence and Lola hits the stage where her bedroom is the best room in the house (as long as she’s in there alone or with a girlfriend), I am discovering that that old highway is no longer useful. It never really got me where I needed to go, anyway. There’s no getting around the hurt when someone leaves. So instead of pulling away preemptively, I’m going to hang on a little tighter. I’m going to squeeze every last drop of affection out of the time I do get with these amazing people and hopefully the signs on my new road will read

I LOVE YOU AND I MISS YOU.
GLAD WE HAD THIS TIME TOGETHER.

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Listening to Stakeholders

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It is often hard to remember that listening is the best first step to creating solutions, especially when the solutions are not for us, personally. The older I get, the more I understand that listening is truly the best first step in nearly every situation, though, whether it’s meeting someone new, planning a project, walking with a friend.

If we don’t listen, it’s easy to forget that someone else’s perspective might be incredibly valuable.  Last October, Gloria Steinem told this story to a room full of people I was lucky enough to be in.

She had traveled to Africa to attend a summit on sex trafficking with many, many organizations and governmental representatives all gathered together to come up with ways to combat this rising challenge.  During a break in the meetings, she was approached by a woman who asked her to travel with her to a small village where several women had recently been lost to this trade. Gloria was flattered and shocked, unsure of what she could do to help this small village, much less how she would manage to communicate with the villagers, but she went.

She described a scene where a feast was prepared and blankets spread out on the grass, with all of the women in a circle ready to address her.  Translating their concerns was difficult, but they found a way to get their request across – the women of the village wanted elephant fences.  Gloria was confused. What do elephant fences have to do with sex trafficking? The women explained:

The livelihood of this village was largely dependent on growing maize.  Over time, though, as elephant habitats become smaller and smaller, the elephants discovered the fields of maize and came  to the village to feed on them.  This left the village in dire straits – they had not enough maize to feed their own families, much less to sell to others.  It is because of this that three young women traveled to the nearest large city to find work to send home money to support their families. When they arrived in the city, they were kidnapped and sold as sex slaves.  The rest of the villagers reasoned that if they raised the equivalent of a few thousand dollars to erect fences that would prevent the elephants from eating their maize, they could keep their young women from having to leave the village to find work.

Gloria was stunned by this simple solution – one that nobody at her enormous conference would have come up with. She traveled back to the city and worked for several days to raise money to build the fences.   More than that, she demonstrated the power of listening. By traveling to the village to hear the ideas of the people most affected, she was enabling them to empower themselves and helping them find a way to prevent their girls from being sex-trafficked.  It is not a solution for the many, to be sure, but for this village it was monumental. And it cost mere pennies compared to the proposals being raised at this multinational conference, most of which were not preventative solutions, but punitive ones for the traffickers themselves.

I am so often struck remembering this story as I read stories in the news about government agencies or non-profit organizations who are puzzling over potential solutions to poverty, hunger, major health issues, and violence in particular countries or communities. The first question I ask myself these days is whether the folks with the leverage and money to provide help have asked the communities in question for their stories, their ideas, their solutions. Bringing American-style answers to questions that exist in non-western countries may turn out to be wasteful or overkill and it may well be that if one or two people listen to the individuals living with the struggles and ask for their perspective, they can come up with simpler, more comprehensive solutions.

It seems obvious, but it is so easy to get caught up in our own viewpoint and the belief that wanting to help is enough. I do the same thing with my kids all the time, swooping in to offer advice or put into place some new system that I think will fix a pervasive problem in our household without asking them what they think. And, especially when it comes to kids, I think adults do that a lot. I watched my daughters’ middle school revamp their dress code four times in four years, having discussions with staff and administration, parents and board members, but it wasn’t until they listened to the students that they came up with a solution that everyone feels good about. It was a student that got so frustrated she crafted a PowerPoint Presentation to illustrate the issues and potential solutions, and it took a month of student council meetings to come up with a new set of guidelines that has everyone breathing a sigh of relief. Four years (at least). Four years of meetings, research, discussion, fiddling with different ideas, and nobody was happy.

I have a photo of an elephant fence tucked inside my nightstand as a powerful reminder that listening is one of the most effective, efficient things I can do every day. Even if I see my strengths as collaboration and a strong desire to help, it turns out that the best way to do that is by asking the stakeholders what they think, no matter who they are.

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How Do You See The World?

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When I look at this image, the first thing I see is an old woman and it’s hard to see anything else.  But as soon as someone points out the young lady facing away from me in the same lines on the page, it is nearly impossible to see the old woman again. I am stuck with the view of the young lady.

In order to switch back and forth, I am forced to focus on certain parts of the image instead of looking at the whole. If I want to go back to the view of the old woman, I seek out the line of her mouth and raise my eyes up to her beak-like nose.

If I then want to see the young lady again, I look out to where her eyelash and nose are to shift perspective.  And as I do so, I am reminded that I possess the same power of perspective in my daily life.

Perception is reality, right? So if we’re in a challenging situation, or a pattern in our lives where our default perspective is glass-half-empty, it’s up to us to change the way we look at it. The trick is not to fill up the glass, but to see that it is half full instead.  We have to focus on certain parts of the whole that help us to see things in a different way, and it is important to teach our kids how to do this for themselves. As they hit adolescence and emotions become king, it can be really difficult to perceive things in a positive way, and once the negative patterns have been set, it takes work to change them.

If you have a teen who sees things in a decidedly unhappy way (I hate school, nobody likes me, I suck at math/history/lit), there’s no use challenging their perception. You will get nowhere by disputing their sense of reality or belittling their emotional responses, but you can help them turn the tide slowly by helping them see things in a different way. One powerful way to do this is to begin a gratitude practice (although you may not want to call it that).

When Eve started high school there were a lot of challenges and it didn’t take long for her to feel like a square peg in a round hole. After weeks of angst and hand-wringing (on my part), lots of conversations designed to build her up, and a few frustrated arguments, I decided to lead by example. Every night before turning my bedside lamp off, I texted Eve a list of three things I was grateful for and asked her if she had three to tell me about. I wanted the last thing in her mind before sleep to be happy.  She started out slowly, often able to come up with one or two things, but sometimes getting stuck. It took a week or so before she was texting me first and asking for my reply, and her list of things has deepened from “my soft pillow” to items like “teachers I can trust” and her own strengths. Her perspective is shifting right before my eyes and I would be remiss if I didn’t say that it has made a difference in her willingness to get up and tackle each new day as it comes, challenges and all.

It is a practice, and, like the effort it takes to focus my eyes on one set of lines or another in that drawing when I want to see a certain perspective, it is continual. The best part about it, though, for me, is the reminder that I am ultimately in charge of which lenses I see the world through – hope or fear, scarcity or abundance, gratitude or anger – and I hope that my girls are learning that, too.

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No Easy Answers

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FhaC protein of Bordatella pertussis

In December, Eve had whooping cough.  We didn’t realize it at the time, but when I finally took her to the doctor three weeks later to see why her cough hadn’t resolved, we figured it out. Of course, by then, she was 90% recovered with just the lingering chest-rattling hack as evidence. Me? I was instantly chastened and laughed to the Physician’s Assistant, “HA! Sign me up for Mother of the Year!”  She was quick to let me know that I shouldn’t worry – there wasn’t much they could have done for her anyway. And, hey, now she likely has natural immunity, so it’s all good, right?

The thing is, it didn’t really occur to me that whooping cough was a possibility, mostly because Eve was vaccinated on schedule.  I had peripherally heard about whooping cough outbreaks – mainly in high schools around the area – but they never really penetrated my consciousness enough to worry about it.  (That said, I will relay the memory of one time a few years ago when a local private high school was closed because of a widespread outbreak of whooping cough and my Facebook feed suddenly reflected a whole lot of vitriol directed at “those people who don’t vaccinate their kids” despite any sort of hard evidence that it was an unvaccinated student who was the cause of the outbreak. That was a little shocking to see, but since I didn’t have a dog in that fight, I left it alone.)

So how the heck did my kid (and all the other high school kids in the area) get whooping cough, especially those who have been vaccinated against it?

There seem to be no simple answers.  At least not any based in medicine.  I was told (on Facebook) by a friend that my daughter likely “got exposure from another who had not been vaccinated,” but I don’t see how that’s the most likely explanation.

Certainly, it seems that the whooping cough vaccine that kids are getting is not as effective as it was meant to be. Most kids get their final booster around age 11 or 12, and the outbreaks are happening to high-school aged kids – the vast majority of whom have an unpleasant week or two and then are absolutely fine.  The CDC speculates that it is possible that the kids who have been vaccinated against whooping cough can harbor the bacteria in their system and when the vaccine efficacy wanes, as it is wont to do, it rears its ugly head and voila, kids get sick.  Of course, they also speculate that it is possible that there are some unvaccinated kids out there who get it and pass it along.  And they also speculate that the bacterium itself has mutated just enough to render the vaccine itself useless.

Like I said, no simple answers.  Folks who like to believe that there is an anti-vaccine conspiracy often say that if everyone were vaccinated, there would be no virus/bacteria left to mutate and that is why everyone ought to just go get their kids every shot offered.  Except that many of these shots are NOT SAFE for babies of a certain age, so there is no way to ensure that the virus/bacteria is gone forever.  And there are some folks whose medical status is too fragile for them to get the vaccine, which means they have to weigh the odds of potentially dying from getting the shots against the potential that they might one day come in contact with the virus/bacteria in question.  Again, no such thing as 100% vaccination and, thus, eradication.

In the days before vaccines, people did get sick and die from diseases like whooping cough, although generally that was because their health was not great for other reasons – malnutrition, immune disorders, age.  More often than not, people got viral or bacterial infections and recovered from them and built natural immunity. Nursing mothers could pass this natural immunity on to their children in many cases, and there was very little need for a vaccine, much less a boost of immunity later in life.

All this is to say that I don’t think we can continue to place an inordinate amount of faith in the vaccination system. Yes, smallpox was eradicated by a vaccine. We all know the story. But one success story does not mean that this solution fits everything. And it also doesn’t mean we ought to stop asking questions about vaccine efficacy for other, different, less deadly diseases (READ: HPV). And it certainly doesn’t mean that we ought to feel free to vilify and radicalize people who are rightly concerned about their own children’s individual health.

Eve most certainly caught whooping cough from someone at school.  Whether or not they were vaccinated against it means nothing to me. That kid came to school infectious, whether they knew it or not, coughed on Eve, or at the very least in her close vicinity, and the rest is history. Should I go on the school website and rail against the parents who send their kids to school with a fever or a nasty cough because it resulted in my kid getting really sick? I don’t think so. Generally, the only people who end up needing hospitalization for whooping cough are babies, the elderly, and those whose health is already compromised, so there was almost no chance she would suffer long-lasting effects from her illness.  Going to school where there are other people – heck, going out in public, touching a door handle, using an ATM machine, breathing on an airplane – is putting you at risk for catching all sorts of things from other people who are either knowingly or unknowingly sick.  We cannot ever hope to eradicate all possibility of getting sick from other people unless we choose to live in a bubble and that is a pretty sad, pretty fear-based existence.  I’m not pissed off at the person who shared their whooping cough with Eve. I consider it part of the price of ‘doing business’ as they say. I’m only a little bit sad that Lola didn’t manage to catch it at the same time, if only so I know they’re both immune.  Shhh, don’t tell her I said that.

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What Does This Say About Our Culture of Busy-ness?

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“Smart Clip Reminds Parents of Babies Left in Cars”

I don’t even really know where to go with this. I know that the Consumer Electronics Show in Las Vegas showcases all sorts of innovative and crazy technologies, many of which are altogether unnecessary but cool. I get that in the spirit of seeing what can be created, companies often try to design markets around things that nobody needs, but might want. 
But this? A clip that fits on to your child’s seat belt to remind you that they are there when you exit your car? Yes, I have heard the (extremely rare and baffling) news reports of harried parents accidentally leaving their children in cars while they go to work all day. And I agree that if even one life can be saved by installing a “Smart Clip” on your child’s carseat, it’s worth it.  
But more profoundly, this speaks to me of the increasing lack of attention we pay to the things that we do every day. How far does your mind have to be down the rabbit hole of to-do’s that you forget about the living, breathing human beings around you? How much could some small shift in attention and mindfulness affect our ability to remember what we’re doing while we’re doing it?
I’m not judging. I am as likely as anyone else to forget what I’m doing in the moment. I leave my keys behind, my grocery bags in the car about every third time I head to get food for the week, and I often get into another room and have to stop a beat to recall why the hell I’m there.  All of those things point to me not being present, and generally all it takes is a thoughtful intention to be mindful of what I’m doing to bring me back.  
I am reminded of something that I heard Dr. JoAnn Deak say once in a lecture she delivered.  If a girl isn’t making eye contact with you, she isn’t processing what you’re saying.  I wonder how often I don’t look up when my loved ones come into the room and start talking to me, my head buried in a book or staring at my computer screen.  I wonder how that makes them feel, or if they are so used to people not making eye contact with them that they don’t think a thing of it.  And I wonder how many nuances of conversation I am missing by not taking a nanosecond to be intentional about my attention.  It is so easy to think that we are paying attention simply because we do something by rote (nod and murmur, “uh huh” at a break in someone’s sentence, buckle our child into their carseat and drive to work), but it takes more than that to truly be part of that action, and ironically, it doesn’t take much more time. It simply requires that we be mindful of what we’re doing at any given time, a task that is becoming increasingly challenging for all of us as we succumb to the rhetoric about ‘productivity.’ Personally, I’d rather see more people doing things with intentionality and purpose and attention than people doing more things on balance.  A culture that requires a “Smart Clip” to remember its children are there isn’t one that I can be terribly proud of. 
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Life Lessons on Holiday

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Holiday breaks are a great time for me to learn new things about parenting. As an introvert who has crafted her life to include working at home with no other companion but the dog and the occasional lunch or coffee date if I feel like it, having my kids and my husband home all day every day for two weeks feels a bit overwhelming.  Add Bubba’s family to that for one of those two weeks and you can be sure to find me ‘meditating’ at the sink as I do dishes a few times a day. It’s the one place where I know my kids won’t come near me for fear of being asked to help clean up after fourteen hungry family members.

I won’t bore you with the details, but here are a couple tidbits I picked up over this year’s break thus far:

1. The use of superlatives is altogether unhelpful.  In particular, I am referring to the words “always,” “never,” “everyone,” and “nobody.” I am just as guilty as anyone else of using those words to make a point, but the problem with them is that they are rarely true and they serve to escalate the emotional intensity of any situation rapidly.  When my kids come to me claiming that “nobody ever includes me in ________,” or some such notion, my first tendency is to dispute the claim and point out all of the other times that she has been asked to join in the fun. It may be true, but it certainly isn’t helpful. Generally the best thing I can do in that situation is to acknowledge hurt feelings or frustration and ask what their preferred solution might be.  

Those words also have the added effect of convincing us that things are worse than they actually are. In my case, when my kids tell me “everyone hates me,” I have little else to go on. While I think it is highly unlikely that each and every single person around them wishes them ill, I don’t honestly know if it’s true, or even if my kid really believes that it is. But sometimes, if I’m not fully paying attention, I take them at their word and then I get all wound up in the belief that it’s true. The more I react to those kinds of statements, the more I reinforce for my kids that I believe what they’re saying and that’s how destructive patterns get laid down. When we all start buying into the always/never/everyone/nobody stories, it’s a dangerous time.

And so, I have asked my kids not to use those words about each other or their friends or family, especially when emotions are running high. It gets me wound up, it winds them up, and we all go down the path of darkness and gloom on a false belief.  They agreed to do their best. And then they busted me when I did it the next day, whining that NOBODY EVER offers to help with the kitchen clean-up after dinner. I guess they took the new rule to heart.

2. The use of apologies, especially parental ones, is incredibly important when it comes to trust-building. I don’t recall the parental apology being a thing in my childhood and I have yet to talk to anyone from my generation who does. When my dad was dying, he told me several times how sorry he was for certain things that he did or said when I was a kid and I can’t even begin to say how important and meaningful that was to me.  That said, I often wonder how different all our lives might have been if we had learned to apologize to each other early and often.

I was in my thirties before I fully realized that my parents were human beings and always had been. During my childhood, they subscribed to the school of thought that said you didn’t back down to your kids, didn’t show a chink in your armor, didn’t let ’em see you sweat. While I often questioned my parents’ wisdom and choices, I never thought of them as fully fallible human beings who might be unsure of themselves as parents. It never occurred to me that they weren’t 100% sure of what they were doing. It certainly occurred to me from time to time that they were evil or hated me or were hell-bent on making my life miserable, but I never considered that they could be just making mistakes along the way. Until I had kids. Then that reality hit me full force.

I started letting my girls know from the beginning that I am human, mostly for selfish reasons. I didn’t  want them to expect too much from me, so I made sure they knew I was doing my best, but would be mistake-prone until I figured things out.  The best way to let them know I was fallible was by apologizing when I really messed up. When I freaked out disproportionately and screamed at them, I came back later to say I was sorry and tell them how I wished I had dealt with the situation. After falsely accusing them or punishing them without all the facts, I would later admit my mistake and ask for redemption. Now that they are teens, this policy is paying off with trust. Not only do my girls know it’s okay for them to mess up and lose their cool, but they know how to apologize for it as well.  I know parents who balk at admitting their mistakes to their children and I understand how hard it is, but I have to tell you that there are not many more powerful ways to connect with your child on a truly authentic level than to let them know you’re sorry for hurting them. Even if I feel like my girls have over-reacted to something emotionally, the fact is that perception is reality and if they don’t trust me to empathize and acknowledge their feelings, they aren’t likely to come to me with other emotionally charged topics.  Apologizing is a small price to pay for keeping the lines of communication open. And, fortunately or unfortunately, I’ve had enough fights with my kids to have had lots of practice saying I’m sorry.  I can tell you that it gets easier with time and rarely (I can’t say “never” anymore) has there been a time where they didn’t apologize right back.

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