Thursday, April 7, 2016

The Loneliness of the Long Distance Mother

“Lisa, remind me again what Laura’s son’s name was. I can’t remember in my fudge of a brain.”

My lovely, heartbroken friend who lost her beautiful grown son to cancer 6 years ago was asking me, another bereaved mother whose young adult son died from T-Cell Lymphoma two years before that, about the name of a third young male cancer victim who died 7 years ago. She said her brain is “fudge.” That’s on a good day.

Immediately, I thought I remembered the title of a book, The Brain of a Long Distance Runner, which turned out to be “The Loneliness of the Long Distance Runner.” Not exactly what I thought I recalled in terms of the metaphor I was seeking, but just as apt, perhaps more so. In any case, where is the book, the article, the professional scholarly research on either--the loneliness of the long distance mother, or your brain on the long haul of grief?  Because that is what we, the bereaved of many seasons, are doing-- running the longest distance, the rest of our lives--under the weightiest burden imaginable---surviving without our children. And over the extended course of this slog, our brains have become---other---altered, if you will. In the bright-sided lingo of the day, it is called “transformation.”  I prefer the term devolution.

The early stages of this protracted process are forgiven--almost excitedly so--as if the act of showing kindness is something for which the outside world is to be congratulated.. It is expected that we will be unable to think clearly, make sound decisions, move into our new empty lives with determination---though it is not at all unusual that our so-called “bereavement leave” will amount to no more than 3 days--maybe a week or two if we work for a “compassionate” supervisor who “understands.” But, those early days, during which we have been begrudgingly given a time- stamped pass on our inability to function, come to a halting, often uncomfortable, (always to us, unbelievable) end. Death, after all is death. The living must continue to soldier on. And most of us do, regardless of the irrational shame, self-loathing, and the betrayal we are likely to feel as we engage in this forced march further and further along into a pointless future away from our beloved children.

With guns at our backs we learn to carry the weight of our loss, but our hearts are hobbled and our minds have shrunk. I believe this is true--perhaps literally--but certainly in a figurative sense that absolutely translates into the realities of our lives. We are no longer capable of either generating or sustaining the neurological synaptic energy required to function, feel, be, as we once were. It is gone. What does this mean? What does this, as the mental health professionals like to say in their oily psych-speak, “look like”?

I imagine how our brains begin the dissolution process is different for everyone, but I venture to say that perhaps one of the most unnerving aspects is the change in our perception of time. All time. Linear time, that concept upon which we base our entire lives, is shattered. The past and the present fuse into one and the same; the future, apart from the terror that accompanies even the thought, disappears entirely. A hallmark of trauma, we are stuck right here, right now, in a nightmare that will not end. This stasis wreaks havoc. We lose our place in the scheme of things;  lose any autonomic physical or emotional stability that can be assumed from the simple movement and placement of ourselves in space. We are in a free-fall determined and represented by a catatonia of the soul.

Over time, this inner disappearance of a center is reflected externally in an overall inability to think, to act, to find any meaning, any purpose. We lose ourselves in this sorrow and the sorrow engulfs us. Without the active practice of thinking, acting, being, we become ghosts. To those around us we may appear to be present, but our presence is an illusion, a hologram…. we are long gone….. Then, even our own gone-ness becomes irrelevant, most poignantly perhaps, to ourselves. What happens to us no longer matters--not in any sense that those who have not been through this holocaust can even begin to understand.

There is, in all of this, an odd upside, or at least a lighter shade of black. Being a “shade” is not necessarily the worst thing that can occur (that, certainly, has already happened).. There is a definite, albeit disconcerting, freedom in living the invisible life. Freedom first from the expectations of others, then more significantly, from our own expectations of ourselves to remain in a world where we are not, cannot, will not, be seen.

And then, under the umbrella of absence, we are, truly, completely at liberty to forget….the names of other people’s children, the absurd demands of a supervisor, a distant relative’s birthday, where we dropped the car keys, laundry soap, to turn off the television, plug in our phones, to eat, sleep, laugh, breathe….and in the forgetting to become one with our loss. To disappear into the expansiveness of our broken hearts, to be defined, motivated, filled to the brim and pushed forward by that which has annihilated us.

Thursday, October 22, 2015

Watch Your Thoughts

Every morning I think about life and death. I remember awakening to worries about work, or what to have for dinner, or an argument with Steve, or an extra five pounds I wanted to lose.  Now, I walk to the bathroom and only thoughts of death assail me. They begin before I can even pee. His dying. My living. Here we go. The weight descends. The day begins. Only it is always the same day, with the same thoughts. Dead, dead, dead. It is coming close to eight years. I say this to note the irrefutable horror that despite the time that has passed--every day begins with his death.  

Another thing. I am so tired of reading about how learning to tolerate one’s emotions is the key to initiating and maintaining mental health. It is the inability to tolerate one’s most painful, frightening sensations that leads to avoidance, continuing fear, anxiety and addiction. So advise the experts. Well, I can honestly say that I have not only been tolerating these feelings for most of my life, living with, trying to manage and accept various and sundry frights, but since Maxx died been subject to the worst storms of sorrow imaginable. In my 62 years of life, and in particular the last 8, I have lived bowed with loss, desperation and incalculable loneliness to the extent that I can’t even begin to understand any longer what is meant by the need to “integrate” this grief in some alchemical way that will allow me to ever again feel any sense of purpose or peace. This is simply not possible. It is what we used to call 30 years ago, psychobabble.

I did not become addicted to drugs. I did not become dependant upon alcohol. I never attempted suicide. I have simply continued.  I felt everything. I feel everything. I saw everything, I see it now. The memories do not fade. In fact, it may be that they become more clearly etched against the backdrop of passing time. My heart is heavy, freighted with the dregs of grief. The wash of pain, back and forth, never ends. Is this neurochemical habit, or tolerance?

I am reading a book called The Man Who Couldn’t Stop: And The True Story of a Life Lost in Thought--a book about OCD. The author, David Adam, writes: that “psychologists have identified three types of dysfunctional belief important in the development of OCD. The first is an inflated sense of threat and personal responsibility. The second is perfectionism and intolerance of uncertainty. The third is a belief in the over-importance of thoughts and the need to control them.”   

Further: “Inflated responsibility is probably the most important dysfunctional belief in OCD. Obsessive-Compulsives often feel responsible for having thoughts and for the negative consequence of their thoughts on themselves and others-and (this is what knocks me down)AND FOR NOT ACTING TO PREVENT THOSE CONSEQUENCES.They believe that if they have any influence over an outcome then THEY ARE RESPONSIBLE for it. This triggers a cascade of twisted secondary ideas--’having this thought means I want to do it’ or ‘if I fail to prevent harm then it is as BAD AS DIRECTLY CAUSING HARM.’ “ (Caps, mine.)

With these as qualifying characteristics, is this grief-stricken life in which I live not defined by OCD-the obsessive thinking that I caused my son’s death by not doing enough, or knowing enough to prevent it?

He also discusses the phenomenon of the disorder that results in disordered thinking that leads to mistrust, nay, disbelief in one’s memories of events. Am I misremembering because I cannot trust my own mind to play back either a realistic chronology, or more crucially, the interpretation of events that mirror that chronology? What really happened and when? Did I think this and then that? Did I do that based upon what I perceived to be real? Was what I believed to be true flawed at the outset because my thinking, my perceptions were skewed as a result of mental illness? An “illness” I never even realized I had?

I am not laying claim to suffering from OCD. Nor do I think, strictly speaking, that I have PTSD. But I do firmly believe there are striking elements of both disorders that have become lodged in my brain--so much so as to define who I am now in a way that feels to be permanent. A distinction of a particular sorrow. Branded onto my heart, burned forever into the synapses of my neurochemistry--inescapable.

In the facing page is this quote by “Unknown’

Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.

Thursday, May 14, 2015

FURY (Part One)

"I plead to thee, oh Furies, avenge these heinous deeds. Descend with wings of razors, grant me the vengeance that I seek. I beg for retribution. Let the rivers all run red, punish those who swear false oaths and allow me my revenge."

When I was a little girl kneeling alone behind the closed door of my bedroom listening to my father shouting, my mother’s rage filled cursing, I remember feeling afraid. In those infinite moments when fear began its slow timeless seep into my brain- one sludgy drip at a time, any childlike assumptive sense of safety about the world was corroded into a twisted landscape of dwarfed possibilities. And born of this fear, inevitable by-products, came the oozing slime of anxiety, the undulating burn of fury.

Though years of self-study, analysis, and reading have helped me to intellectualize the genesis of these emotions in all clarity and understanding, this knowing has made little difference in my ability to either redirect or minimize my default emotion- instantaneous insurmountable anger. It is a place I can, and do, drop into in a nanosecond. I cannot say that I am transformed into a vengeful harpy for there really is no transformational process involved--an act that requires an alchemical transition from one thing into another. This is more the reflexive movement of someone throwing off a thin mantle of civility to reveal the thing that lies beneath--the muck of decades bubbling just below the surface.

“Here,” is what I am,” I silently scream. “Here.  Have a look. Then take a step back. Better yet, run.” The rage I feel is consuming. The need to apologize, to obfuscate, to deny has grown significantly less important over the years. It is as if an unseen hand has been chiseling away at the flat gray rockface to reveal, neither the graceful shape of meaning, nor a startled glimpse of the glittering essence of mindful purpose, not the opportunity for a momentary psychic swoon into the infinite universe of connectedness--but only this: a small hard mound of black grit. Obsidian scratchy bits that are at the center of my soul. About, and because of which even I, ever the agent of a seething wrath, can sustain awareness only temporarily. Yes, there is fear, but the anger that has layered itself in striations of molten lead--one eruption after another, after another--has made of the fear an inconsequential ash not worthy of notice, a mist of dust to be coughed away, extruded with all the other floating debris of a wasted life.

Once, this fury had a center. Nor did it then feel like a fury, but rather a powerful destiny to which I had willingly shackled myself. There was a centrifugal force that kept me anchored. So simple. My children. First one, and then the other. Individually, and together. I lived for them. My world existed, took shape, became real only because they had been borne. I was as nothing, or of very little substance, before they materialized, flesh and bone, tears and drool, pee and yeasty breastfed baby poop, dimpled elbows, and sticky snot; and later, much later, clusters of pimples, knobby knees, curling hair and soft swellings. Before this wellspring of fecund growth, the occurrence of which gave purpose to a series of heretofore random twitches that had passed for living, I became transfigured into one who simultaneously has, and sustains, life. How much greater a purpose than this? How is there a meaning more substantial? This was granted to me early---too early to realize the magnitude of the gift--though on some obscure level I knew it to be the only truth that mattered.

And then, after the willing giving over of my heart year after year to their combined overarching divinity, (for, to me that it exactly what it was) I was annihilated in the sudden and swift destruction that accompanied the removal, the unimagined disappearance of one half of the whole that had been my world. And with his vanishing, so too did the other half begin to subtract itself from my awareness until all that was left was a nothing that predated the nothing I had been before.

How does this not turn one into a screaming lunatic? How does this not create the pyre, ignite the kindling of rage into a conflagration of howling despair?

Monday, May 4, 2015

Christina’s World
Andrew Wyeth


Amid the fires of the last century-
the cities and the Jews-
stands the Angel of Death
mighty as in the Plague Years
and in ascendancy still

Harvey Shapiro
“A Momentary Glory”

“You have to love. You have to feel. It is the reason you are here on earth.You are here to risk your heart. You are here to be swallowed up. and when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near. let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself that you tasted as many as your could.

Louise Erdrich, “The Painted Drum”

When Maxx died I lost not only my son, my family as I knew it, and myself, but my home--not just our house on Leafwood where we had all lived for 17 years--but any sense of home I’d ever had, the intrinsic human need for a deeper feeling of placement on the earth. Uprooted, exploded into fragments, I became as bits of debris swirling in a vacuum; particles of matter blown by random gusts of hot, sucking wind.

Two years after he died, we moved out of the house where he had grown up. Such a cheerful little boy, an unrestrained bundle of gap-toothed smiles and excitement, curiosity and enthusiasm.  The spiritual, emotional, and physical embodiment of joy. He brought that with him, squirming wet from me, corkscrewing his lively being into this world, into my heart, where it seemed there would be no end to the promise of his life force, a continual unfurling of this fulsome love--this startling unexpected hope. Maxx, more than any other, settled me into this mess of an existence, a chaos I had never been able to explain, understand, contain or shape. He fixed me, with a firm definitive tuck and a pat into a pocket of this universe--his universe--where I was gently held -- comfortable, secure. He tied me to himself and my own knowing with a steady hand. I never again felt unmoored. Until he died.

Thereafter and literally overnight, though we remained in that house for two years, “being at home” was no longer a state of mind or physical space describing anything even vaguely associated with comfort or familiarity. What had once been our refuge, our family’s hearthstone had suddenly begun to emit a suffocating miasma of ghostly memories, driving me to fits of screaming and pounding the walls. From corner to corner, his bedroom, the living room, the kitchen, I shrieked his name. “Come back, come back, come back!”  

And so, at last, when I was able to finally recognize that our home had been replaced by the reflection in a funhouse mirror--distorted, bizarre, the hallway alternately too long or too short, the floors that came undulating up to meet me as I collapsed in a heap whenever it became too much to remain standing--I was able to make the concentrated effort required to pack and leave.

I never expected again to feel at home wherever we landed. And I can say now, almost six years and three moves later, that is exactly the case . Despite the fact that we have found a lovely rural area surrounded by farmland and vineyards, this is not home. I cannot say, wouldn’t even attempt to speculate that this home-lessness is a permanent condition, but I strongly suspect that it is. Losing Maxx remains a devastation on so many levels, not the least of which is my ability to feel that I belong--here, there, wherever. Home equals belonging--membership, relatedness to others, connectivity. These all feel gone now. I have become a refugee in my own life. A serial traveller, without standing in a world where every sunrise, scent, sound, visual, thought, reminds me of home; a passing whisper of what was, mocking my broken heart.

Friday, April 3, 2015


Rembrandt, The Storm on the Sea of Galilee

Strength isn't about feeling powerful or certain. It has very little to do with denial or avoidance. It is not a delusional reality bracketed by empty homilies and easy platitudes.  It is rarely a place of comfort and there is little immediate solace to be found anywhere within its lonely realm. Real strength is about crawling to the finish line on bloody hands and knees. Real strength births, with every harrowing breath, a courage we do not know we possess and though we never failed to recognize the depth of this ferocity in our beautiful dying children, we excoriate ourselves for following in their stead. We punish ourselves for doing exactly the thing for which we loved them ever more deeply as the light they shone in a gathering darkness dimmed. We blame ourselves for their deaths; we blame ourselves for living. We become as crazed animals--maddened by the confusion of our days, the push pull of of an agony that never ends, the suffocating nature of loneliness and longing. 

Here is a truth. It is as hard a truth to understand as it is to know our children died. Every day that we live is a testament to our strength. Every day that we wake into a new life of grief (for every day it is new again) we must reaffirm that this pain is what our purpose has become. This may not feel, or be true in the beginning when all of existence has been thrust underground. But in the movement of a time so achingly slow it as if we live permanently entombed, the blackened earth around us shifts enough so that we sense there is a choice to be made. I think it is a very simple choice, albeit one so complex and challenging in its ramifications, to make it once is not possible. The nature of this decision requires that it be made over and over and over again. Perhaps every day for the rest of our lives. 

We choose, as did our children, to keep going. They could no more escape their illness than we can escape our grief. We move into the hurricane every day clutching tight to our hearts the unspeakable pain, holding close the losses that now define us---but we move. And that is the choice. To move into this storm fused into one with the sorrow we will not, cannot leave behind.  That alone speaks to the greatest courage that as sentient beings we can ever know. This is who we are now. Mothers alone--but never without our children.

Thursday, March 12, 2015


In the early years after Maxx died, I wrote a good deal-- attempting to use landscape metaphor in my descriptions of what grief might “look” like. I dreamt of trying to climb out of cavernous holes in a desert floor, desperately clinging by my fingertips to small outcroppings of crumbling earth. I huddled in the backs of tunnels, scraping my skin against jagged rocks. Once, Steve was driving a car in which I was a passenger and he simply drove us off the edge of a high cliff. We sailed out into the open air for seconds, then began the plunge toward earth. I looked at him, my mouth open in a silent scream, thinking, “Well, this is it. This is how I die. It really is over.”

This week I read what felt to me to be one of the best descriptions of the uncharted, terrifying journey that is grief. “Journey” really isn’t the right word--something else that is alluded to in the passages below. It feels too simple, too bland to describe the experience of losing a child. We have no language to accurately convey the lives we lead now. But Mr. Sides has captured, as well as any writer can, (without knowing that he did, I’m sure) the utter helplessness that comes from having lost all sense of control, any sense of the familiar, all meaning in the face of a catastrophe as large as child loss.

This excerpt is from “In the Kingdom of Ice: The Grand and Terrible Polar Voyage of the USS Jeannette,” by Hampton Sides, Doubleday, 2014, (pp 269-270).

...time was running out; the short Arctic summer would soon expire, and they would be trapped on the winter ice.

At least then, however, the ice would make some manner of sense. At least then it would freeze into something reliable, with surfaces that feet could understand.  There was no order to this kind of ice, no consistency. Its every feature--its color, texture, solidity, expansiveness, crystalline structure, collapse points, tendency to shift, potential for fracturing, capacity for absorbing or reflecting light-seemed in constant flux.

...One could stare at it all day and never see coherence. Needle ice gave way to striped puddles, to thick driven snow, to ruined battlefields of shards and bricks, to spectral blue sculptures of ancient ice, and to the wind-whipped corrugations of snow that the Russians called sastrugi. The pack’s logic, its forces of repulsion and attraction, were inscrutable. It was the very definition of random.

Splashing and stumbling over it, the men kept trying to find the lip of some pattern, something predictable or usable, some groove they could lay their thoughts into. But none was apparent. This melting icescape seemed to observe an Arctic corollary of pi-- a sequence that never repeated or resolved itself. Every scalloped intricacy, every winking lane, every hummock and pressure ridge, every honey-combed crevice offered mysterious new warps of design.

At first, De Long strove for a vocabulary to characterize this exasperating quality of the ice….Finally, he seemed to tire of descriptors, settling instead on one all-purpose word: mess.

“A fearful mess,” “the rotten ugly mess,” a confused mess,” “one bad mess,” “the sliding, shifting mess.”

That’s a perfect descriptor: “mess.”

Thursday, March 5, 2015


Almost Spring, 2015

Recently on campus there has been a month long event featuring various exhibits and presentations on forgiveness. These have been sponsored by what is called the Forgiveness Project, a UK based charity organization whose primary focus is to (from their website

use storytelling to explore how ideas around forgiveness, reconciliation and conflict resolution can be used to impact positively on people’s lives, through the personal testimonies of both victims and perpetrators of crime and violence. Our aim is to provide tools that facilitate conflict resolution and promote behavioural change. Central to the work is our commitment to work with ex-offenders and victims of crime as a way of modeling a restorative process.

Their reach is global, their founders, speakers, sponsors, and work with victims of horrific violence is world renown. In every sense it is an organization that represents the best of what we can achieve as humans--compassion, understanding, tolerance, peace. What negative or disparaging thing could be said about either their intent or more particularly, any of the individuals who, after having either inflicted and/or suffered unimaginable cruelty and pain now actively practice non-violence? How is it possible, when faced with their stories, so many of which are unbelievable given the extent of the atrocities committed, the suffering endured, to find one dismissive thing to say about the efforts of this organization and it’s participants, believers, followers? How could anyone be “against” forgiveness? Even to express a desire to examine the concept in its details is tantamount to a kind of moral heresy. Their cause is more than just; more than right; it is, has become a profound religious movement against which any expression of skepticism is viewed as the pathetic bleatings of the ill-informed, the lost.

I admit then, that I am lost. And will probably remain so--my own choice.  In the seven years since Maxx died, I have closely, microscopically, obsessively  examined every idea, every suggestion, every approach possible not only to understand what happened to my son and my life, but also to make meaning out of what is inherently and always meaningless, the death of one’s child. In this pursuit, I have come across the idea of forgiveness in all its forms-- again and again and again. Forgive the doctor, forgive the medical arrogance that gives rise to the lie of “expertise,” forgive a monolithic medical/pharmaceutical cartel that promotes and rewards monetary greed (to the tune of billions). Forgive, forgive. Forgive myself--for not knowing more, or enough in time to pull my son to safety before the drugs he took killed him. I am no stranger to this landscape of forgiveness, to its tenets, its theories, its comforting homilies.

From a study table in the far corner of the Library Reading Room I listened to one of the speakers, Fred Luskin, (he too is “famous” for his work as the Director of the Stanford University Forgiveness Projects and an Associate Professor at the Institute of Transpersonal Psychology.)

Lest anyone not take Mr. Luskin seriously, or doubt his decades of expertise and knowledge in the philosophy of forgiveness, please note that he has worked with “the mothers of Ireland” whose sons were killed fighting in the IRA, he has written a book, helped to produce a film, “The Power of Forgiveness”, traveled the world spreading his message to thousands. He joins the ranks of some of the most famous, well respected people in history--Elie Wiesel, Nelson Mandela… . And, as if anyone needed it,  there’s more… Dr. Luskin’s work is not only intrinsically the “right,” the ethically correct way to live, it is physiologically good for you, “proven” to be a powerful antidote to living a life in psychic pain and possible ill-health--backed by studies at Stanford (six of them, I think it said on the website). Learning to forgive lowers your blood pressure, boosts your immune system.  Not, actually, a new idea though. Ancient Judeo-Christian thought repackaged for 21st Century virtual consumption. Dressed up in “evidence-based” science as measured by biofeedback markers, MRI’s and brain cat scans. I remain unimpressed--but not for the reasons one might think.

Mr. Luskin addressed his audience of students and faculty about the power of forgiveness using examples of a “a fight with your parents,” or an abusive “boyfriend.” Admittedly, he was meeting his listeners at their level (mostly female teenagers and young adults).  But even as I understood this, I could not help but feel deeply irritated, yet again, by a relatively gentle, life-affirming concept reconstructed into a zealous, head banging rant; a hue and cry taken up into the popular global culture as another sloganized placard of assault.

Enough. Perhaps there is room for forgiveness in any number of circumstances.

But not all.

There is, to my way of thinking, no forgiveness for the perpetrators of the Holocaust (including those who turned their backs-people and nations). And to this I add--because this was my own personal holocaust--no forgiveness, no understanding, no acceptance for anyone or any happenstance array of events or decisions (call them mistakes) that had anything to do with the death of my son. No forgiveness. Ever.

This is complex.  Because I need, on some level, to be forgiven for what I feel was a disastrous decision to allow him to take the medications he did to keep his ulcerative colitis in remission. If I cannot “forgive” myself, how can I continue to live? Yet, live I do. Every day. And this is where I take exception to the entire concept of forgiveness--which seems to me is really only ever about finding a way to feel “good” about oneself. And my point is just this:

Sometimes it is not possible to feel good.

Sometimes we must live with, and in, our excruciating pain for as long as it takes-forever. There is no way out. No escape. No denial. No amount of forgiveness that will or SHOULD assuage our anguish, or for some, mitigate taking responsibility for the consequences of their actions-intentionally hurtful or not.  Of course, I did not knowingly injure my son with deliberate intent. The fact that my only desire was to help, to heal, does nothing whatsoever to alter or alleviate my anguish. How could it? Perhaps, the best we can ever hope for (in the rare moments when we dare to hope) is to learn how to live inside the Iron Maiden.

Forgiveness, feeling better, being “OK,” accepting that I was not to blame is not the goal, is no longer either the catalyst or the loadstone of my life as a grief-stricken parent.  My grief belongs in the realm of sadness. That is its place, its authentic home. It is not within my power, nor would I assume it is my right to lighten the burden. I will not “recover.” To do so would only be possible if Maxx were to live again. This, now, is my reality and I am under no compunction to forgive--anyone, anything. Nor will I be bullied into believing that such a simple concept could ever be enough to embody or explain the beauty, the life, the potential, the glorious human who was my precious son, Maxx.

This is what I am left with.  It is enough, simply because there is nothing more. I adjust constantly to the hurt, the guilt, the longing, that pumps my heart, envelopes my brain in a fog of sorrow and doubt. I know that the full-body adrenaline rushes of anxiety that jerk me awake from a restless sleep will pass. So I wait. That is my lesson and has nothing to do with forgiveness. It is only and ever about one thing. Waiting. Waiting with your pain. No need to embrace what suffocates you, what defines you. No need to accept, or “forgive,” or “recover.” Just learn to wait and be with what is.