Monday, July 21, 2014

What kills love

What kills love? Only this- Neglect

I am going free form tonight, a first for me. It is kind of like going commando only less interesting for others. My writing process is lengthy and labyrinthine. I get phrases, fragments, memories of an idea I have not yet had; and I wait to find out what ties them together. They loiter for days or weeks, sometimes months before I can discern any organization or meaning from them.

I have been too full of fear and sadness to notice the march of future essay ideas. I have been lost. But tonight a quote from author Jeannette Winterson announced it’s presence and demanded to be wrangled with:  “What kills love? Only this- neglect.” [Note to self/attempt to hold myself to the same standards as my students/ I will post the name of the book when I remember it]

My grief-stricken and single-focused mind seized it and tried to put in on my dissolving relationship like a sweater two sizes too big. Of course it fits- and there are a million versions of neglect- but the phrase wanted to be bigger. 

So here I am, no pants on (figuratively, people!) wading through the murky water of criminal neglect.

The original sin, the doorway of the beast, is to forget to love oneself. Scary, terrible shit happens all the time. In calmer times we commit to mindfulness, to walking ourselves through fear with compassion and loving-kindness.  But when your personal earthquake strikes; a disease unravels your nervous system, for instance, or you lose the only person you could not bear to lose; all bets are off.  You are thrown into a primal place, the dark space that lurks under your carefully constructed philosophies. Who has time to meditate, to stay connected to them selves when the water is rising? When the floods come, I do my best to just disappear. I need to save others so that I do not cause a fuss when I too start going under.  

The instinct is so immediate and the personal costs are so great that I am suspicious that something other than altruism drives my many rescue missions.  Perhaps always saving others is a feeble attempt to control reality. I think I am hiding; preserving whatever is left of me by ignoring there is anyone left at all. 

It is a pattern of a lifetime. The siren call of putting myself in front of whatever is hurting someone I love; then limping away empty. Fetal in a cocoon of self-protection, I attempt to float towards the next me.  When I was first diagnosed with MS, I became a superhero. Fighting with all claws out when I witnessed injustice, when people were getting hurt. It was all a great distraction from my own Titanic. I forgot to pay attention to myself. I licked my wounds alone, and never let others see them.  I was fragile and overwhelmed. I still don’t know how to live with this diagnosis; I still don’t know who I am….now.

After the loss of identity, comes neglect of the people and things that could have reminded me of who I am. As the water rises I am too overwhelmed by the probability of drowning to reach for the life vest. Love is neglected by refusing to appear to be drowning to those who would save you. The disappearance is almost complete, even I cannot make out the outlines of me anymore.

Then out of nowhere there are cairns in the abyss. I stub my toes on them, I grope wildly in dark space, until my hand hits another.  And another. And somehow, I am pulling myself home. Making peace with what is gone, no longer resisting the current. There is a path, or maybe just a vague sense of the surface. Strewn with stack-stoned flags from other realities about the enduring nature of connection, compassion, life itself.

I am starting to see them. My vision is blurry and my muscles are weak. Just when I start to go under again I find a cairn and hang on. I am hanging on with my last ounce of strength. There are people I love who can be rescued only by my continued efforts to surface. Maybe this is some essential truth about love itself; the rescue has to be your own. When the cabin is losing pressure, you do have to put on your damn air-mask before assisting anyone else. I wish I had paid attention to the thousands of times I've heard that from flight attendants: "If the cabin loses pressure, the air masks will drop. Secure your mask before assisting others." The air masks will drop!  There will be enough air for everybody.

 I will myself to be visible, I will my self into the future. I know the first step is to love myself enough to let you see that I am drowning. Here is the battle cry I have choked on all these years:

It hurts. I am scared and treading water. I exist. I don’t recognize my body, I am not certain of who I am anymore under the weight of a decade of loss. I resist the comfort of disappearing so as not to bother anyone. I found a cairn and it showed me the most important thing, the thing we all think we won’t forget but do anyway:
I still fucking exist.

So what now?


I have been quiet for years. Too quiet. Not just on my blog, but in my life. I have recently decided to pull up my big girl pants and show up for my life again. Newly divorced, I am stumbling through the work it takes to review, understand, forgive, restructure, reorganize, and fill out the contours of a life. My life. And as much work as it is, it is a nap in a hammock compared to what it took to burn down my life to save myself. Here I am: Charred and gritty, but smiling and grateful.  When I wonder how I ever got so totally lost, I find that I never was. I had left bread crumbs in my writing. Never published, often unfinished or so raw the words were more likely fingernails grasping for crumbling rock, but they are here. Messages to myself all along the way, recording what was happening but never processing it to complete a gestalt. So I am moving backwards in time now, publishing bread crumbs. They may be out of sequence occasionally, but they move back into the past in a roughly linear fashion. They are more than the sum of their parts. I am starting to understand the big picture. It's a process, and these word maps to myself are mine.

Saturday, April 26, 2014

The Do-Over

We humans are skilled at screwing things up. I myself am exceptional at it.
Who among us has never needed a second chance? How many chances have we been offered but failed to see?

Maybe that is why I love old houses in neighborhoods that have seen better days. When a house sits vacant for too long, it’s spirit wilts. It is a visible wound. At first, you cannot tell that the occupants have fled. The house sits there expectantly, awaiting somebody to return. As the days turn into weeks and the weeks into months, the energy of the home fades before eventually disappearing completely. It is as if the home has stopped waiting to be loved. When too many homes in an area become devoid of the tender ministrations of the people who dwell there, the whole neighborhood empties of hope. No matter that there are people who still live there, who hold on to the sense of place they originally found and then nurtured in their homes. The tipping point is impossible to predict exactly, but one day the whole area begins to display the sense of abandonment evident in a house that has gone too long without love.

We make judgments: This neighborhood is not a good one, it is an investment bound to fail. Love is an investment they we are all too familiar with failing. But one person moves in, able to see the home as whole if only in the delusion of the future. Then a family arrives, with noisy kids and adults consumed with business, trying to keep it all together. One by one the houses perk up. Perhaps they will be the next one chosen, perhaps their do over is just around the corner. And for no reason except that someone needed a house, and a house needed a person the energy of the neighborhood begins to feel light again, begins to feel hopeful.

I too, have succumbed to the sense of abandonment. I too, have forgotten what love feels like. Who was I, when that withered old grapevine looked to me like a vineyard? Who am I now that I can’t even remember what that naïve optimism felt like? It makes a good story, one too often retold. I was in my early twenties, trying to establish a new me after graduate school. My heart had recently been broken and I was careening towards round two. I called my mother from the crumbling porch of a long vacant bungalow where I hoped to find my footing and I gleefully announced that this home had a vineyard! I can remember who I was then because people who love me remind me of that woman now. I was starting over in the shadow of one of love’s crushing blows. I was desperate for a sense of place, desperate for hope, desperate to belong to myself again. I needed to heal and this little old house needed someone who saw past the years of neglect.

Here on the eve of altering the known universe of my children with the news that their family is changing form, I am filled with a gratitude and wonder so immense that I cannot keep the tears from falling. I have been gifted a do over, that most unlikely chance to try again. My family has lived in this old house but I stopped noticing that a dry old vine languishing in the yard holds the potential of renewal. My home has wilted as hope snuck away. I too, have succumbed to hopelessness, to the mistaken belief that there is something missing, that there is not enough love to make us whole.

Overwhelmed with a sense of compassion for my frail little humanity, I like the rest of the species thought I knew my solidity but kept disappearing. I think I am safe on my path but keep falling down and needing to start over again.  This is the lesson in so many incarnations about what happens when love is neglected: Self-love most of all. Forgiveness too: for those I have judged to have wronged me, for my judgments against myself and for the compulsion to judge at all, instead of allowing the plot to unfold. But I have become light as I took time to notice my unbelievably good fortune to be offered another chance.

It is pure Grace is that the do-over is possible: a gift from an infinitely generous universe. We are loved enough to be given the chance to start over--despite our many failures and disappointments. There are people who recognize and remember me before I forgot myself.

This is what love feels like. 

A few years after that phone call to my mom and the discovery of the little house that needed me as I  as much as I needed it, my shriveled, abandoned vine produced abundant red grapes, sweeter because of the years it was dormant. There is no way to repay such a kindness, the full faith of those who love me even as I have forgotten how to love myself; the chance to trade a withered past for fecundity. So I will allow the unfolding; drop the judgments about the years I curled up inside myself. Drop the resentment about not being seen, the narrative about who is to blame. I am already greening, delighted to find out that I have nourishment to offer. It turns out, I am just like that withered vine, maybe we all are. Not gone, just forgotten. Not forgotten, just lost.

Here then, look in my stained and calloused hands. I can offer you grapes, and that will be enough.

Saturday, February 8, 2014

Going for gold!

I recently had one of those brutal yet eye-opening experiences of realizing that other people may not perceive me as the adventuresome, radical, freewheeling 22-year-old I was when my self-concept crystallized.  Some 17 years, two kids, and a progressive neurological disease later my self-concept has not evolved. This may sound borderline psychotic to you, but to me this is the height of resilience. Shabam!

Humiliation is a gooey thing and I don't see myself washing off this recent discrepancy between my perception of myself and another's perception of me easily. One day in the distant future it will make a very funny story. At this moment it remains a festering wound. But let's go on.

The 2014 Winter Olympic games have just started. My athletic, patriotic, and well- adjusted older sister has always loved the games. Two years ago, she stood in my living room with tears in her eyes as the summer games opened in Utah. I could only assume an athlete had been killed by a wayward land shark in the opening ceremony;  but no – it was pure American pride and empathy with the realization of the Olympians' dreams. Gheesh.

Which is why it is almost an out of body experience for me to be obsessed with these winter Olympics. You will not be surprised to learn that in high school I was in a fairly marginal social category. Because of my innate inability to care what other people think, this was never a problem for me. It did drive my letter-jacket-wearing sister a little nuts though (being only one year older, she witnessed much of my slinking around the high school with the skaters and freaks- my peeps). This Olympics is different for me because of the inclusion of a number of extreme winter sports such as slopestyle snowboarding and halfpipe freestyle skiing that appeals to my more extreme nature. Watching the qualifiers for women's slopestyle snowboarding, I was feeling sad that I missed my chance at greatness. Although the oldest competitor is 33 years old I convinced myself that at 40 (with zero snowboarding experience) I could take them all – if it were not for this stupid MS.

While attempting to drown my regret, the source of the misunderstanding mentioned earlier was becoming clear via texts (make it stop, please make it stop).  Behaviors I had perceived as indicators of romantic interest were the actions of a well mannered young man, perhaps demonstrating how he would like his mother to be treated.* That is all I am going to tell you right now so let it sink in.

You might imagine I would go for the stereotypical pint of ice cream at this point, but you are drastically underestimating what my mind can do with a challenge.  I could not have predicted it either, but I'm actually a little proud.  My mind issued a clear directive: I was to get into Olympic form.  Only wimps give up their snowboarding dreams (even if they did just develop them in one night of Olympic propaganda). I'm hardly a novice at this whole 'deranged-maniac-who-lives-in-my head-and-will-not-be-denied' situation. I've lived with her -my uniquely insane mind- for my whole life.  So that's right folks; I'm in training.

One could be forgiven for assuming I would sleep off this latest delusion and wake up sane again. But no, there is no time for sanity when you're going for gold. I've already had a protein muffin,  a 15 minute trot on the iGallop and 20 minutes of intense stretching. I downloaded three new fitness apps, ordered new sports video games for the Xbox and took my baseline body measurements. Mindful of the need for balance, I gave my body time to recover with an hour-long nap. Now I'm up, dressed in yoga clothes, and waiting to see what is next on my training schedule. Having already chickened out of my event (slopestyle), I'm sure Shaun White has had a less productive morning.

I'd better get to it since 2018 is only 4 years away. I'm willing to consider sponsorship even this early in my Olympic career. Shout out to potential sponsors: I am currently wearing Nike, Athleta and a bionic leg. Not that I wouldn't sell my individuality for sponsorship from Adidas or Lululemon. 

Call me!

*Minor details obscured to protect the last shreds of my dignity

Sunday, February 2, 2014

Back by popular demand (er, Dr.'s orders)

I am not comfortable with vulnerability. [Excuse me while I choke on my laughter and pee in my pants at this small understatement.]

Where was I? Ahem. Indeed, this small but fundamental fact about myself was driven home of late by an unexpected turn of events triggered by my attempts to limit the pain and dysfunction caused by muscle spasticity in my back, torso, leg, arm and hand. No sighs pul-lease, it's only on one side of my body (see what I mean...)

Depending on who you ask I strong-armed (get it??) or politely accepted the plan of my neurologist to give me approximately 60 injections of botox in said areas. I was planning to be pain-free and totally relaxed (not to mention much, much younger- a toddler really) for 3 months for the price of an hour of injections with needles so long and sharp they glint with desperation.

Long story short, stupid idea. I ended up with total right sided paralysis for close to a week followed by extreme (and on-going) weakness. And then I ended up in my therapist's office wondering what these strange and disconcerting emotions were (shame, vulnerability and anger, apparently).  She reminded me that I am not a total stranger to these phantoms (huh?) as she remembered me processing them in my blog back in the day when I used to process. anything. [Sidenote: My kickass and saintly therapist read my blog- I WIN, er won, I guess, since it's been a few years since she had anything new to read].

Despite the fact that it has taken me 2 weeks, a considerable amount of Valium and countless hours searching for my login and password, I'm baa-ack! For what it is worth I'm committed to resuming processing of and communicating about all of the messy shit in my head that apparently grows teeth when I ignore it. Small, sharp kitty teeth laden with flesh-eating bacteria which, when sunken into my flesh, requires a hospital visit and more needles. I'm pretty much done with needles- what choice do I have? Fo real.

P.S. Being the social media hermit that I am, I was unaware until recently that the blogger is supposed to actually respond to the comments left by readers. Like every other form of communication, I read them, responded brilliantly in my head, and did nothing else. Leave me a comment now and I promise to respond. As soon as I get through 2 years of emails, voicemails and texts that have met a similar fate as the comments so generously offered the first time around.

Thursday, March 22, 2012

The Difficulties of Being


There is something that needs to come out.  I’m not being mysterious, I have no idea what that something is.  I often have the sensation that my writing is organizing itself in my brain long before I approach a keyboard. Usually there is a general theme, but each individual idea is a little unruly and they all wander around unable to line themselves up or form effective working groups. My thoughts are like kindergarteners, vaguely aware that they should be doing something, but scattering away, distracted by a leaf fluttering by the window or a colored piece of paper left on a table nearby. My job is to notice when the gang is all there and gently attempt to make them hold hands and line up single file.

It’s like noticing before I get a migraine in that I have a felt sense of a migraine coming on.  I couldn’t label or quantify the symptoms at that point, and it feels a little presumptuous to name an event that will take place in the future before I have a hint of pain. Usually, because I try to be logical, that means that I delay taking migraine medication. Since migraine medication is most effective at the first sign of a headache; by the time I am there, I am unable to open my eyes or leave my bed because any light or sound is a bomb in my head. 

What is the first sign? How do you know, in advance, when you are there?

I don’t usually inform friends that, “I have a migraine coming on,” although I am curiously not as shy about predicting “I have an essay coming on.” This has been my refrain for months now. I have sent myself by email little thoughts or expressions that captured something important for me at the moment. Although I can see the words all neatly organized together when I open my email, they no longer make any sense to me; even I wonder what I am babbling about. I think that is probably a bad sign.  I try to reframe the image of kindergarteners into a vision of the goddess Athena, springing forth from Zeus’ head. I want something to spring whole from my head. I want everything to make sense. Instead I have fragments of sentences, words that felt important at the time, a list of what appears to be random neural firings.   I have a sense that there is something important rattling around in my cortex, but it remains pre-verbal, inaccessible as a whole.

I have an old friend who wrote recently to ask how I am. Not really how I am, but just to check in, send birthday wishes. More and more I find myself not just grumpy about (as I’ve been in the past), but actually unable to offer a pithy phrase, or socially-sanctioned response to many social niceties. There is so much going on at one time, that to pick one descriptor out of so many possibilities seems impossible.  It’s like my cognitive threads all got tangled and now I can’t find just one line to follow.

How am I? I am…noisy. My brain that is, my brain is being very noisy. This week was my birthday and, as is the case when women age, quite a few people have asked me how I feel about it. I look around in my head for an honest answer and find that I feel nothing about it.  The implication of the question is that women want to stop the clock- lest the inevitable physical signs of age become more apparent. Lest they slow down, or become, god forbid, old.  Look, I use a walker. Sometimes a powerchair. I bought my first cane in my early 30s. I need to sit down frequently before my legs give out, and stand up just as often to prevent my muscles from stiffening. I drive a mini-van with hand controls and a wheelchair lift, for god’s sake. Crows feet? Sagging skin? I am always aware of the clock ticking down; my birthday is not necessary to remind me.

Now the title makes sense!! Days ago I sent myself a message about the title to the writing that I would inevitably do to get the kindergarten class lined up: The Difficulties of Being.  It came to me after a conversation about being unable to find an accessible meditation center where Me-on-Wheels might join a community. I titled the idea, “The Difficulties of Being [Buddhist].” I immediately recognized that “Buddhist” was too narrow and narcissistic, as there are so many things that are so difficult to be.  Like a dog with a bone, my mind grabbed it and ran away to gnaw. It is not just about categories, and the sentence doesn’t need a subject.  Essentially true on so many levels, sometimes it’s the being itself that challenges me. In response to my old friend’s question: Being is challenging me, that’s how I am.

To me, this is not a depressing thought. I can hear my sister sighing now; Sandra urging me to increase my dose of anti-depressant medication. But there is nothing wrong; I am merely being [challenged]. I am being [productive]. I am being [happy, most of the time; except for when I am not, which is often].  So is everybody else. The title should be: The Difficulties of Being [Insert Your Name Here].  Who isn’t struggling?  Are there people out there for whom being is easier?  When someone responds “Fine” after an acquaintance hurriedly shouts, “How are you?” before disappearing around a corner; could they actually just be fine?  It seems too simple, too “Leave it to Beaver.”  I am always tempted to respond to the casually tossed “how are you?” with something like: “feeling unworthy,” or “mildly anxious,” just to see what happens.  “How are you?” has become an acknowledgment, a friendly salutation, but no longer a question.  It always confuses me, because how I am, is very complicated.

I wonder if this is truer for people with illnesses, or disabilities? This idea does depress me, but I still think I am on to something. I’ve become so closely identified with my body, and attending to the drip-drip-drip of shifting disabilities, that I would have to refocus my energy in order to report out alternative, independent thoughts. And refocusing just requires so much energy that I usually opt out.  The most honest response in many circumstances is something along the lines of “I am focusing on lifting my foot so that I don’t fall, worried about my class not being interesting enough, hoping I was on schedule with my medication, wondering if I have time for a smoke, and remembering with regret about someone that I forgot to call back.”

Maybe this is one of those MS silver linings that I hate to admit to finding.  Maybe, just maybe, the fact of living inside this body makes my relationships more real than they might be otherwise.  I don’t have time for small talk or paying attention to people I don’t care about when coordinating movement takes most of my attention. I have had to painfully cull the relationships that couldn’t make the leap from the old me to the new. How I am is always complicated now, and I’m more cautious about with whom I share it.

I, like all of us, am a gazillion and one things at a time.  I am grateful and angry, optimistic and hopeless, humbled, awed, and disappointed. I contain the universe; am a daughter of the Big Bang.  And yet my existence, my identity in this life in this body, is as ephemeral and insignificant as a speck of star dust, hurtling through the galaxy. One set of circumstance, in hundreds and thousands of lifetimes.  It seems absurd to have this compulsion to piece it together- to make it make sense.

Yet, I am riveted by the question of other possible outcomes. I want to know who I would be if I didn’t have MS. Would Me-without-MS have a cheerier outlook? Would I be able to answer “How are you?” with “fine” and I’d mean it?

I asked my mother if she thought I’d be different if I didn’t have MS . This is the extent to which I am haunted:; hounded by the ghosts of other versions of myself.  There was a long pregnant pause before she replied: “Well….You’ve always been different honey. That is how your mind works.” Then she, who we both agreed had a genuinely rosy outlook and felt fine being “fine;”  she reminded me that we can’t parcel out pieces of identity as if each were independent of the others.  Identity is the whole of so many different parts. Me-in-a-different-body is not possible to know.  Me-in-a-different-body does not exist. She has never existed, and will not exist in the future. It’s not that I am being cheated of the life that I thought I’d have. I have this one, and it is what it is. I am who I am. 

Identity is a tricky beast. You think you nail it and it slips out of your grasp.  The evolution of identity is an unceasing process; requiring perpetual re-adjustments to who we are now.  I think I’ll write that friend back and say, with all honesty, that I am fine.

Saturday, February 4, 2012

Dumb Growls

Dumb Growls


This phrase, that I don’t even know the meaning of, has been floating around in my head for days. Close to the bone. It feels like I am living so close to the bone these days. We all are. Like the cushion has been sliced away, and my vulnerabilities are right there on the surface, like skin. When your body is unrecognizable to you, there is no other pretense. No artifice seems possible, as I observe my central nervous system devolve.

Have you ever had the opportunity to watch as a child learns to walk? They are tragically unsteady; each of the million tiny movements required to walk is brand new and requires total attention. Distracted for a second, a foot turns, balance falters, and they land- diaper on floor again and again.  Their brains are making connections faster than the speed of a blink.  The neural coats are not quite on yet, and as a result the transmission is choppy. So one foot forgets to lift, or it lifts too enthusiastically and throws the whole procedure off kilter. I fully accept that I am a complete science nerd, and I love to watch as little brains myelinate, and movements become more certain, more precise, over just a few years time. My son is working on snapping his fingers, and blowing bubbles with gum right now (not, primarily, simultaneously). I find it endlessly fascinating as he cognitively understands what needs to take place, but struggles to make his body complicit with these novel instructions.

When he was just learning to walk, I was busy un-learning how to complete that seemingly effortless symphony of motion. As he became more sure, I hesitated more. As he grew comfortable with a narrower stride, my legs were started to look like they were balancing a very pregnant woman with a pumpkin on her head.  Not graciously, either.

My son has become a graceful creature, all raw muscle on a tiny little frame, skin so close to the bone.  I, on the other hand, feel like an injured hippopotamus moving through space.   In a wilderness film, I’d be the animal separated from the pack to provide sustenance to the tigers.

That last sentence sounded funny in my head, but when I read it out loud seemed so tragic.  This is my tragi-comedy. What if, before we were born, our souls lined up and reported what movie genre they would like to choose for this incarnation? Many would choose romantic comedy. Some would choose drama, or comedy. If your soul was late getting in line, there might only be horror or suspense story lines left. I came in somewhere in the middle, had to have that second cup of coffee but at least my alarm went off. This is what I chose: Funny in my head; tragic in body.

Recently I hung out with a very dear friend in the middle of his worst nightmare.  This particular nightmare is the gift that just keeps giving; full of tangles and twists that drop the ground out time and time again. This friend believes in science. Physics, actually. He’s all about the time-space continuum and it’s ability to bend. He believes in emptiness, at the core of matter; the black hole. It brings him peace. Electrons, circling protons, the illusion of solid matter.  His presence, watching him move through the wildfire swallowing everything he thought was real, is magnificent. He has never been so present, although he experiences himself as cut-off. He is raw, close to the bone, and it allows me to know him in a way never possible before.  He make me wish that I too, believed in quantum physics. Black holes seems probable, sucking in the life around them. Some of us live in the neighborhood of black holes, and spend immeasurable energy resisting their gravitational pull.

Another friend, another virulent autoimmune disease. Her husband leaving her after 2 decades of shared history. She only speaks of him with love. Her compassion and enlightenment makes me weep when she talks to me. Who is this person, who can transcend such horror? Who am I, who cannot?

My friend Kelly, about whom I have written before many times, the one with AS- possibly the most tragic of all of the auto-immune disorders in my circle, has recently been diagnosed with cancer. Really universe? Really? Shouldn’t things be somewhat evenly distributed among the population? Even just a little?  She’s one of the kindest, most gentle and consistent people I have ever known. If I was offered a break by whomever might be up there, making these decisions, I’d give it to Kelly.  I don’t even believe there is someone up there; offering punishments, rewards, and occasionally a get-out-of-jail-free card. But I am angry that there isn’t, and even angrier if there is.

I don’t want to find the bright side. I don’t want the light to creep in. I want to stew in my own little cauldron of self-pity and rage. Perhaps for this reason, I have been unable for a month to complete this essay, and it’s companion piece, two treatises on darkness. I am determined not to let the light slip in, not to appear “resilient.” I am so fucking tired of being resilient. I just want to be small and ugly and relentlessly disappointed. I don’t want to suck it up and believe that I can teach my children about coping, compassion, and moving forward regardless of the road bumps (or 15- car pile-ups, as the case may be).

Is this a 15-car pile up? It definitely feels like that- at least part of the time. Are there bodies flung all over the freeway, their bereaved making the primal scream, the universal and unique sound that escapes when we lose someone we love? When I found my beloved German Shepherd, unexpectedly dead, years before it should have been “his time,” the wails that I emitted over his lifeless body sounded like they came from someone else. Somewhere else. An endless well of grief, an animal sound that I had never before heard, much less emitted. And I didn’t care. I howled and screamed, completely taken over by grief, the primal scream of loss.

Later that year, when I lost my first baby, there was no screaming. There was only silence, like I had been caught in an avalanche. The silence roared; everything else was drowned out. I think I cried silently for months. Every night, she was still there in my dreams. In my dreams, I safely contained the new universe. The silent weeping would start the minute I awoke; reality assaulting me during each moment of consciousness. My world became enveloped by silence, the peculiar silence of bearing the unbearable. I was honestly perplexed that my heart was still beating, and I didn’t care enough to wish it wasn’t.

Maybe that is what I am trying to accomplish here, in language where I want desperately to demonstrate my grief, in language that stubbornly refuses to acknowledge hope. I have never howled about the loss of my body, the body that I had lived in for so long, the body I never considered would change into unrecognizable form. The howl is something language cannot do. It comes from a place beyond language. Jeannette Winterson writes that “Grief leapfrogs over language and lands in dumb growls beyond time.”

This is my dumb growl. This is my testament to everything I have lost, to all of the people I love who bear the unbearable, every day. We blend in, ghosts among the living, ghosts among those who have not yet, or are not currently, in the process of losing everything that makes sense. Inexplicably, the world hasn’t stopped, or even slowed, as we howl and weep. There are children who need us, partners suffering in their own silent hell; family, friends, and even strangers who need us to be okay. So we suit up in our armor of the way we were and move through the days. The growling ghosts stay mostly out of the sight of others. It is hard enough, watching someone you love suffer, and the losses are shared by everyone who loves us. It would be unthinkably selfish to share this too: This desperate grief, the unraveling of who we were, the empty space of loss and outrage.

It is not that there are not other things too. My children are miracles whom I have the honor to watch develop every day. My partner is the strongest person I know, who misses nothing, but keeps us afloat anyway. For these and others, I have to walk through the days, I have to keep accessing the me that they recognize; the person who suits up and shows up every single day (albeit with more “breaks” to give the ghost some room to roam.)

Kelly- I know you are howling. I know you put on a brave face, I know you continue to function in the world as everything crumbles inside of you. Me too. There are many of us out here. I hear your dumb growls. They sound just like mine.