“To be alive is Power.” – Emily Dickinson

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being ALIVE, change, dark, Emily Dickinson, labels, mental illness, stigma, suicide

My memories of the past several years are smeared, streaky and ghosted like an underdeveloped Polaroid. They are a part of my story and yet seem foggy and distant, the narrative of another person. It’s almost as if I’m the omniscient storyteller, the voiceover for a character in a movie I can replay in my head. I can watch it over and over, but in a way that is removed, slightly aloof. It is only in violent flashes that I actually recall living through these moments, that the person in the ambulance, the ICU, the treatment center, is me.

Mental illness began for me as a narrowing of my experience, a tightening of the seams, as if a thread was being pulled too hard, gathering all the stitches in one large bundle. Things that used to be spread out, allowed room for breathing, became uncomfortably close and thick. The world itself looked different from this place; the coloring was off, as if the lens I was peering through was filmy and sepia-toned. Things were brown around the edges, dull and old-fashioned, and appeared at a distance. It was like I was always carrying something heavy and awkward, something I couldn’t figure out how to put down.

In college, doctors called it “depression.” In my mid-twenties, it was “eating disorder.” Then it was “anxiety,” then “bipolar.” And, when I still wasn’t better, it became “Borderline.”

This ebb and flow of diagnoses, all very different in symptomatology, has followed me through the duration of my time in the mental health system. My experience with stigma has mirrored this as well, shifting according to my labels.

For it turns out that disclosing suicidal ideation when you are depressed warrants more resources, while revealing thoughts about killing yourself when you are Borderline is attention seeking and manipulative. Continuing to struggle when you are depressed makes you “recurrent;” when you are Borderline, it makes you “unwilling.”

As discussion of mental illness has increased, it has become organized in a hierarchical schema in the public sphere. Much like the bias of the “deserving” and “undeserving” poor, there are diagnoses that are viewed as organic and ones that are perceived as the person’s fault. This is as true in the media as it is in the emergency room or the therapist’s office; while great strides have been made in raising awareness, stigma still exists, especially around personality disorders and chronic suicidality.

I’ve been told that I’m 99.9% lethal to myself. I’ve been told that I’m an “atypical” Borderline patient because I’m so easy to work with. I’ve been told that I’m ungrateful for attempting suicide because there is nothing wrong with my life. In a meeting with my family during a hospitalization, a doctor told my parents they might as well buy my body bag now-with me in the room.

These instances stand out in the otherwise hazy recollection of my past because they are so horrifying. What is worse, though, is how such comments stopped when the label was removed from my chart. Now that I’m back to being “depressed” I am worthy of respectful care. It is as if my humanity is determined by a single word, or the absence of it.

We wonder why people die by suicide, and in the midst of the complex mess of a problem one thing stands out: silence. Is it any wonder that so many are afraid to talk about mental illness when it is so misunderstood? When seeking treatment comes with the burden of stigma and shame?

I purposely talk about my past and present struggles with mental illness with the hope that doing so will influence change. But I still feel a rise of fear when I put words like Borderline out into the world. Most of the time, I try to explain what I’ve gone through without the labels, for these small words that somehow hold such power do nothing to actually capture the reality of experience. And the reality of my experience has come down to moments.

Moments are tricky things to catch. They dart about like tiny fish weaving in and out of kelp forests on the murky ocean floor. If you look at the right time, you can glimpse the silver flash of sunbeams on scales or the flurry of tail-brushed sediment as it rises. It’s more likely, though, when the water is especially deep and dark, that you miss the movement altogether, that what you see is the vast dimness spread before you rather than the brief bursts of activity and light.

It’s so difficult, then, to do what is necessary and helpful in the moment, for when it is most vital, it can seem impossible to recognize it as a moment. If you can’t separate out one moment from the next, if time seems to blend together in a mess of blackness, then reaching out and grabbing the flashlight takes an unbelievable act of courage and strength. And then you must turn it on.

It is almost as if you have to go backwards. You can only see the moments after you turn the light on them, after you know to squint your eyes and wait patiently for the fish to emerge, even for a second, from the swirling seaweed. To do the hard thing in the moment, you have to leap and act even though it feels like you will have to act forever, that it won’t do any good because this doesn’t feel like a moment at all but a lifetime.

It’s standing up and moving one foot in front of another, forcing your legs to follow a path you can’t see, making your brain discount the panic and fear and total darkness that it’s registering and go into action without tangible reason, without any light or guidance at all. Moving when you can’t see what’s ahead of you; that’s an incredible act of bravery.

And so-moments. Because focusing on them is the source of hope when the world narrows, the thread tightens. And shining the light on these moments and how they feel, beyond labels, above single words, is the only way to expand the minds of people who have never experienced such things, to break the silence.

“Something happened here. In your life there are a few places, or maybe only the one place, were something happened, and then there are all the other places.” -Alice Munro, Too Much Happiness

Tags

emotions, faith, Intensity, labels, light, notenoughtoomuch, vulnerability, words

***This post may contain material that might be triggering for some.***

Too much is sometimes not enough, and not enough is sometimes too much.  This sounds like a tongue twister, a spin on words conjured up by dark-suited advertising men with slick hair and thick cigars.  I’ve found it to be mind-bendingly true, though, now that I’m shining the light on it a little.

I didn’t stop eating all at once, or even consciously.  It happened in a series of moments, entirely separate and contained, that somehow compacted like a rock gathering speed down a snowy slope.  When first set in motion, a rock rolls aimlessly, and slow, as an art-lover walks among museum paintings when an entire day lies before them. As it continues, however, the rock’s course becomes smoother, aligned; it is hard to catch the shift in speed until it is careening, with wild and precise abandon, downhill.

So when exactly I stopped eating enough is impossible to pin down; it happened gradually and all at once.  I didn’t notice, or want to notice, at all, and those around me didn’t notice until the rock was going full force, collecting flakes of snow and bits of pine needle to form a growing, evolving mass, impossible to catch.

At this point, enough for me was a fluid word, a feather blown about erratically by gusts of wind.  Some days enough meant breakfast and that was it.  Others enough was a calorie count, or three Diet Cokes, or as much gum as my aching jaws could chew.  It shifted rapidly and almost unconsciously, though the word repeated in my head rhythmically like feet slapping on a treadmill.

Simultaneously, too much became fragile and without shape.  It was ice cream and peanut butter, then any kind of bread, then red numbers on a scale.  And then the two concepts become almost intertwined, vines ensnaring a trellis, until not enough became too much, and the control that had seemed so concrete and logical crumbled like old brick in my hands.

Family and friends and doctors told me the amount I was eating was not enough, that the weight I had lost was too much.  What they couldn’t see was that notenoughtoomuch was the rolling rock, a new word with its own muscle and grit, a force howling along with its own cruel agenda.  And this entity was no longer external, but inside me; I was notenoughtoomuch, and I was the only one that seemed to see it, seemed to understand that the way to conquer it was to embrace it with bony arms.

It’s strange, looking back, how much I deeply understood my eating disorder in some ways, how I befriended it and protected it and cradled it like a small child.  Even before treatment I recognized it for what it was, and that was not the calorie counts in my notebooks or the rigid exercise routines I followed daily.  It wasn’t even an eating disorder, at the core of it; it has manifested itself as cutting, and drinking, and binging, and “risky behaviors” that are hard to put a diagnostic code on, like trying to please others, desperately attempting to fit neatly into Labels placed upon me, at the expense of loosing Myself.  If I were writing the next version of the DSM, I would put notenoughtoomuch as a spectrum “disorder,” because if a doctor really wants to help me on my path to wellness, asking me about notenoughtoomuch would be the best place to start.

That is probably too much to hope for, though, because notenoughtoomuch is so frightening, so hairy and hard to look at, that it scares people who know me well and who don’t know me at all.  Even as I write this, I tremble with the fear of sharing these notenoughtoomuch Words.  And yet, what I can do-must do-is allow notenoughtoomuch to manifest itself in healthier, Shinier actions and Words.  Hold on to the Faith that, while I am notenoughtoomuch for some people, there will be others for whom that is not their Truth, and rather than fearing the vulnerability, I can gather them as part of my tribe.

Notenoughtoomuch is a force, something within me, of me, is Me.  I can’t escape it. And I have glimpses every now and then of not wanting to.  Because I can train my Brain not to fear it, and maybe someday even love it, and allow it to be loved.  My toomuchnotenough Self will always have a wild, speedy course, but now it will be on a path that I blaze for Me.

“WHY you lost your paperclips?!?” -John John

Tags

change, children, emotions, human, Intensity, labels, Living, paperclips, skillz, thesamedifferent, vulnerability

I was a fabulous teacher. If you’re thinking it sounds self-centered for me to state that, don’t worry-I’m thinking that too, and saying it anyways. I was a fabulous teacher.  I was a fabulous teacher because I would have done the job for no money at all (and it’s a sad truth that many teachers would say the same and many make so little that it is virtually true). I was fabulous because many of the traits that make me Me are traits found in Fabulous Teachers I’ve worked with or had.  Fabulous Teaching traits, and traits that I have when I am in my Sarahness. They are are these: I listen, and I allow people to come as they are.  What makes it Truly Fabulous, though, is that those are two traits children naturally possess, in a way that is so beautifully raw because they aren’t aware that they possess them.

You might be thinking I’m crazy (and I don’t use that word lightly!); anyone who has taught preschool, or had a child, or known a 3 year-old, would have good evidence to say kids can’t listen to save their lives (and I don’t use that phrase lightly, either!).  You need only watch 1 minute of a typical circle time to have concrete behavioral examples of how challenging it can be for young children to listen to each other.  But what I know to be true is that it isn’t challenging at all, it just has to be worth it.

Humans, little and big, young and old, make change only when they are personally invested.  The layers of that investment might be thick; someone’s reason to change might be that changing will ease the suffering of those they care about, thus easing their own suffering.  “I’m not going to binge today because I know that when I binge, people I love worry more, and it helps me when I help others not worry.” Or the layers might be thinner, more obvious: “I feel less physical discomfort when I eat one cookie instead of three, so I’m only going to eat one right now.”

We call children under a certain age “ego-centric” because they are; they can’t imagine that the way they experience the world isn’t the way everyone else does.  It’s something we try to teach out of them.  But, ultimately, all humans are ego-centric, regardless of age.  We all act only when it is worth it, on some level, to do so.  We all struggle to see outside our own lens of experience.  The problem is, we “adults” add layers of shame and guilt and fear onto this-we tell ourselves we should be able to step into someone else’s shoes, that acting for selfish reasons is selfish, and that selfish is bad.  But ultimately, we are all always acting for selfish reasons, no matter what.  Children just aren’t afraid to be blatantly selfish, until we show them that they should be.  We do this out of love and a desire to protect them, but what we really do is protect them from being their True Selves, give them the message that showing up as you are is not always okay, especially if “as you are” is Intensely Intense.

I stumbled upon this clip from an old Sesame Street show the other day, and I think it is brilliant.  It is brilliant because I remember watching it as a kid and seeing it as entertainment, and wanting to find some paperclips after the end of the episode.  And it is brilliant because when I watch it now, I see something totally different.  I see a little boy who is listening intently, and picking up cues, and becoming more and more confused because the experience he is having doesn’t match other experiences he’s had.  People don’t usually express Sadness, Anger, and Happiness all within a 1 minute, 25 second span (when they do, we label it disordered).  He, at the age of three, knows this, because he is unable to do what the puppet is asking him to do-show on his face what it looks like to be genuinely Sad or Angry or Happy.  Because he’s not any of those things, he’s totally, legitimately, confused.

 

John John does, in this brief clip, what I know kids to be innately capable of, when given the chance and motivated by their own desires: He listens, and he allows space for this puppet to come exactly as he is-Sad, Angry, Happy.  He does this naturally, despite his own confusion.  He teaches me more about emotion regulation and non-judgment than the adult human behind the puppet.

So, in my cyclical, long-threaded way, I’m back to this: I was a fabulous teacher. Because I didn’t teach at all.  Because I recognized, early on, that kids are the true teachers.  I got the privilege of observing them closely, of watching and listening and describing their journey as they made messes, literally and figuratively, and figured out entirely on their own how to clean them up.  And because I got to do that, I also got to listen to them, when they needed it, and to always make sure to tell them that it is okay to come as you are.  In telling them that, I was telling myself.  My human selfishness was that, in telling an intensely sad child that it is okay to cry and be intensely sad, I was telling myself that, too.  In writing these words I’m telling myself that right now.  And isn’t that what fabulous teaching is all about?

“The lowest ebb is the turn of the tide.” -Henry Wadsworth Longfellow

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change, Intensity, labels, mindfulness, ocean, panicjoy, storytelling, suicide, thesamedifferent, voice, war, words

Alert: this post may contain material that is triggering for some. If you find yourself in crisis, you can call 1-800-273-8255, or visit www.crisischat.org for support.

The “turning of the tide” is an idiom that has threaded itself through my journey; I give the Words themselves ownership because it is only today that I’m beginning to remember, and connect, the ways the phrase has surfaced and dove, dolphin-like, over the course of my Story.  It brings the Words War, and Ocean, and Change to my mind, allows them to shake off salt water drips and float in the air so I can look at them in new ways, brings up memories that my Brain has stored for, perhaps, just these moments.

I remember reading Uncle Tom’s Cabin in high school English and discussing Stigma and Sterotypes and slavery, writhing in my new attempt to understanding the suffering of others, of our country, of a people who were dehumanized in the most horrifying of ways and yet refused to be, who rose above their Labels through Song and Words and Community.

The author of the novel, Harriet Beecher Stowe, is an imperfect (thank goodness, for aren’t we all??) model of a female writer who used Words to turn the tide, to impact and in some ways reverse public opinion, raised her Voice to shine a light on something inhumane, something difficult and scary to talk about.  It is a complicated, flawed, many-layered Story to think of a white woman writer telling the tale of black slavery, and the Messiness of it is the Beauty.

Looking back, reading that Story I was also peeling back some layers of my own, uncovering some Light and Resiliency and Hope.  Now I’m able to connect my story to theirs in some ways, for Stories are all thesamedifferent.  It is one small instance when my tide began to turn.  It is self-empowerment, as I start to stick my toes back in, shock my Brain Cells by dipping into my Memory Ocean, and dive in to the ways I have been answering my own Big Questions all along.

I also remember watching war documentaries with my father-Ken Burns’ Civil War series with the hauntingly Alive Ashokan Farewell (I had to stop and find this song in my iTunes library before I could continue typing-I’m listening to it as I write these Words-and in the spirit of imperfection, I found I had Labeled it “Alaskan Farewell.”), and a show telling some of the story of the Vietnam War protests that I remember only through memory flashes of tear gas and police barricades.  While I’m not certain that the exact phrase “turning of the tide” was used in either of these, I am confidant that, even as a small girl, the notion that the smallest of events can alter the course of history resonated in a deep, mysterious, rumbling way.

Because my Story, all along, has been about warfare, messy and thick with blood and bile.  Battles large and small have been lost and won.  Until very recently, the casualties were Voice and Trust, relationships and freedoms and jobs and Growth.  The fight was raging internally, showing up externally only though razor-clean cuts or bones visible through pale skin, crumpled candy wrappers in the bathroom garbage can, a bottle in a drawer.  These were all evidence of daily carnage, the wake left behind as I struggled against myself to save myself.  And though I couldn’t see it at the time, each was a separate turning of the tide, a “low ebb” that, when rolled up together, culminated in the motion of Change and Growth that is happening as I type these Words.

For now that I’m writing again, and Memory Diving, the tide is turning in Big, Beautiful, Terrifying ways.  And when I say Big, I mean large for me, grand in the sense of my own Story.  Because I’ve found a way to turn the internal battle outwards, to shine a little light on ways it is challenging for me to be me in this world.  The warfare is different now.  I’m speaking my Truth instead of smothering myself in shame.  I can bleed safely, release some of my Intense Intensity in ways that free me rather than harm me, ways that are less scary and confusing for those around me.

I’m wildly in awe with it all, in this moment, filled to the brim with panicjoy.  Panicjoy is a full-body physical response to Emotions.  It is tearful, nauseating, and trembling even as it is grinning straight from the eyes.  It is realizing that I’m Alive on this morning, drinking black coffee and in need of a shower, to write these Words.  It is an awareness that I get to continue this warfare of Words, that I am Blessed, by Whomever or Whatever does the Blessing, to be in this world, Living and starting to notice when my tide ebbs and flows.

“Heaven knows we need never be ashamed of our tears, for they are rain upon the blinding dust of earth, overlying our hard hearts…I was better after I had cried, than before.” -Charles Dickens

Tags

emotions, Ghandi, human, Intensity, labels, skillz, vulnerability

I go to therapy in an uprise downtown, an oddly angled, metallic expanse that always seems to be on the verge of blasting off.  It has multiple stories, an eccentric amalgam of all kinds of business offices and insurance companies.  I enter on the ground floor through round-robin glass doors, the kind that simultaneously delighted and terrified me as a child (what if you get stuck going around and around forever?), and am greeted by few plush armchairs and a couch seated beside an electric fireplace, a kind of corporate-cozy gathering space with a Starbucks in the corner and a hushed feeling in the walls.

I love this entryway, because besides the possibility of caffeine, it offers a mixing-pot of people.  There are young men with spiked hair, square tortoise-shell glasses, and rolled-up pant legs, who rode their bikes in to work at tech start-ups.  There are secretaries, almost always in a gaggle, and woman in power-suits and heels who move just a tad too fast because they are perpetually busy and important, and they have to walk that much faster than the men just to prove it.

And then there’s the patients.  It’s often easy to spot them, for they fold into their sterotype just as easily as the people I described above.  They are the ones without a badge, with a slight hesitance in their step, who have the uncomfortable look in their eyes that comes when you feel slightly out of context.  They are often the ones who stop and sit in the fake sitting room, take a breath to ground themselves, to remember who they are amidst a sea of rushing workers.

There’s the woman with her stone-washed jeans pulled up above her belly-button, who sits next to her rolling suitcase and talks just a little too loud and a little too much to anyone who will take the time to listen (she is the kindest person I’ve encountered yet). There are kids being dragged along by harried parents, reluctantly attending family therapy sessions or getting ADD medicine refilled.  There are students, and salesmen, and teachers, all unified by the noun patient, and a destination: floor E.

I’m brazenly labeling all of these people because, as I said before, I am one of them.  I’m a patient on G, and have been a patient for years, and I’m fairly certain that I betray this every time I walk into that building with my wide-eyed determination to look like I belong.  It’s only recently, however, that I’ve also begun to work on floor J, at a company that is part of the very same system that provides my behavioral health services.

When I take the elevator up, it is a smaller sub-set of that larger melting-pot.  And when I get off on E, it feels less intense, less chaotic.  It’s even more obvious who is who here: patients are in the waiting room, or checking in at the front desk, providers have IDs  and calm, reassuring voices.  I know my role here.  I am A Patient.  I’ve actually been told many times, verbatim, that I am a “good” one.

Because I know my role, I also know what I could get away with.  That sounds terrible, but it’s true.  If I were to scream and throw things, sob in the hallway, allow myself to break down in the bathroom, it would be okay.  People would notice, people would react-some with fear, some with annoyance, some with amazement or embarrassment.  I would certainly be approached by a provider, who would use some kind of step-by-step protocol to calm me down (I say this with compassion and the beginnings of a new understanding after working on J; I have never been a mental health provider and have no doubt it is incredibly hard, and that no one goes into that profession some kind of care and drive to help people), but it would not be outside the realm of normal.  On the floor E, acting crazy is normal.

That’s extreme, the throwing things; it’s not likely I would ever do that, despite my Intense Intensity.  But I did find myself in tears last week, and the only place I knew to go was the bathroom on E.  Because crying on J, were I work, would be unacceptable.  I’m already out of place there; I come to the office on time, I dress according to the company code, I can sit in meetings and listen and understand much of what is said.  My badge grants me access to all that, opens that door to that world of research and education and people who have power.  It doesn’t fool anyone, though, especially me.  I can wear my badge on J, in the elevator, even in the lobby or on the bus.  And people look at me differently; sometimes I even feel more capable, more in control.  But wearing it or not, it’s hard to shake the label of patient.  It’s what I’ve known for so long, feel like it’s in my blood, my bones, my brain chemistry.  I think I’m learning that broken is one of the hardest things to let go.  Who am I when I’m on floor E? And who am I on floor J? It’s the same person, at least I’m trying to be.  And still, I go to E to cry…

And so this week I look to the quote above my writing desk from Ghandi: “In a gentle way, you can shake the world.” If crying on the floor where I work because of stigma and insensitivity in a meeting results in people continuing to see me as only a patient, listen to my ideas as only a consumer, that isn’t the kind of world I want to live in. I want to shake the norm that allowing space for emotions is crazy, weak, patient-like.  Because it’s human.  Yesterday I cried on floor E and floor J, tried to push aside the shame that has held my feelings back, tried to show up in the truth of my Intense Intensity, my Sarahness.

It’s a decision (is crying a decision?) that has me shaking, literally, with fear each day I buzz myself into the office, every time the elevator doors open and I don’t know if a co-worker will enter, or a fellow member of my DBT group, or the psychiatrist who read me my diagnoses one after the other until I felt like a lab-rat.  I hope that, some day, all of those people might feel it is okay to cry, or dance, or admit to feeling afraid, whether it’s on in a workplace, a clinic, an elevator, a lobby.  Because it isn’t us or them, it’s we.  I live the we every day.  And the more we all practice showing up as human, the more understanding we might have of each other, the more normal crazy might become, the more our tears and our joys will overlay our hard hearts.