Monday, May 4, 2015

Christina’s World
Andrew Wyeth

2007

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

INCLEMENT WEATHER


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

ICE PACK


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

BEGIN AGAIN....



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 http://theforgivenessproject.com):


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.


Friday, July 13, 2012

The Begging Dance


Today, five years ago, July 13 Maxx was "officially" diagnosed with Hepatosplenic T-Cell Lymphoma. The "official" beginning of the end.



When I was a girl at home with my mother, who had she not died from breast cancer would have drunk herself to death on Smirnoff 100 proof vodka (red label, not blue), we participated in a particularly memorable danse macabre. The "Begging Dance." The first move was hers. Wherever she happened to be sitting, the corner of the couch, or in bed, she would turn her head in my direction, face contorted in an agony of anxiety, eyebrows pinched into a little hill of despair, mouth pulled down at the corners, eyes swimming in tears and the glassy confusion of alcohol, and move out onto the dance floor.

"Lisa, do you think he will come home this time?"


She was referring to my delinquent, whoring father who was at sea as a third mate, gone usually at this point about 4 weeks.

Depending upon my mood, which was usually at this point, about 4 weeks, a sober match for her own, I would say irritably, "Of course, mom. Do we have to do this again?"


And this was where the dance took off. Out onto the gravel floor in our bare feet we would begin the Begging Stomp.


"But Lis, are you sure? Do you really think so? How can you be sure? Why do you think he'll come home this time?"


I loved her. I hated her. She repulsed me. But I took her hand and we danced on that stoney ground until our feet bled anew. 

And here's the thing about that dance. We always knew, she and I, how it would end. In her case, with another drink and a handful of tranquilizers. I could no more answer her frenzied questions about my father's return than I could refuse to be her partner.

Now, I am two years shy of the age she was when she died; about 10 years beyond the age she was when she invested so much of her survival in the outcome of a dance whose end never varied. And, finally I get it.

"Please, let this never have happened. Please, please, please. Let this never have happened. Please bring him back. Please, let him be here. Please. Please, I want him so much. Please."


Here I am 45 years later, flinging myself into the same choreography of despair, eyes brimming, muscles knotted, bent legged, back bent into a C of sorrow. Empty arms.


"Please bring him back. Please."


My father always came home. Maxx cannot.

Friday, April 27, 2012

Telling the Story

I'd like to find other families who have lost loved ones to HSTCL. I'm uncertain how to do this, but it feels important. There are probably only about 40 people worldwide in the last 4 years who have lost their lives to this particular cancer and probably most, if not all, had been taking TNF blockers (Remicade, Humira, Imuran, 6 MP, etc.). There are so few of us and we have all fallen (or been kicked) into the cracks. At one time there was message thread on the Cancer Survivor Network which is how a few of us found each other over two years ago. Now, apparently the link is "broken." There should be a way that we can find each other. All of our lost loved ones deserve to have their stories told.
I am listing a few url's that are linked to Maxx's story.
The first is to a small private press that is publishing an anthology of motherhood and loss in October of this year which will include a piece I wrote in 2007, shortly after Maxx died. The link below will take readers to the Fat Daddy's Farm blog and directly to an author profile I was asked to submit about myself.
The second link below is to a another woman's blog, Loraine Ritchey, who lost her 29 year old son to Lymphoma two years ago and who was kind enough to post Maxx's story. This piece, describes in more detail what happened to Maxx, why and how.
Information on the possibility of incurring T-Cell Lymphoma as a result of the use of TNF blockers and immunosuppressive medications can be found on the FDA site below. THIS IS EXACTLY THE INFORMATION WE DID NOT HAVE when Maxx was first prescribed these drugs in 2004. It is likely that the makers of these drugs were aware of the potential for deadly side effects, though action was only taken to label these meds (and then only with incremental information not specifically mentioning HSCTL until 2008 and 2011) AFTER the families of victims and/or doctors themselves reported injury and/or death directly to the FDA as an "adverse" event.

Friday, April 6, 2012

Big Pharma

I have begun to read more about "Big Pharma." In no way am I able to grasp the extent of what and how this medical industrial complex (to borrow a term from political/economic theory) invades andcontrols our lives. The more I read, the more overwhelmed I am with understanding just how vast and interrelated all the components are in terms of economic, political and social impact. It is far more than one person can hope to comprehend. It is not possible to know even enough to control how one's own life intersects, as all of ours will, with the medical care available to us as individuals. It is a dynamic, self-perpetuating structure of competing interests so expansive and pervasive that I would venture to say receiving care and treatment for anything at any time in our lives, is probably as much responsible for killing us as it may be for returning us to so-called health. The business of healthcare is tantamount to the complicated machinery that generates the economics and momentum for war. There is as much evil in this vicious and carefully balanced construct of power and force as there is in anything destructive that we can imagine. And the horror here is that the loss of life that occurs as a result of the movement of this power is considered"collateral damage" in exchange for profit.

I am at a loss as to how to identify and classify the most potentially destructive of the components in the mess of what we know and accept as healthcare. I am struck by the insignificance I feel in the face of an incomprehensible set of Nuremberg-like directives regarding how, why, when and, most importantly, what we receive in the way of medical care. I am one woman who lost her son in this vortex. I can and do reduce all of what has happened to me and to Maxx down to the particular, the details, the horror of his illness and death. But I also know that we, my family, is representative of the millions and millions of other individuals world-wide who are caught up in the intricacies of a diabolically envisioned and implemented system of treatment, the sole and corrupt impetus of which is to make money.

A sampling of what I've been reading
this week includes:

An article by Marcia Angell, author of
The Truth About Drug Companies: How They Deceive Us and What to Do
About it (Random House, 2004) published in the Boston Review
(May/June 2010) as well as another she wrote which was published in
the New York Review of Books entitled Drug Companies and Doctors: A
Story of Corruption, (January 15, 2009). More information about Ms. Angell can be found at

The scope of her work in the area of medical ethics and as the editor of the New England Journal of Medicine is amazing and relevant.

I have also been looking closely at Public Citizen, a national consumer advocacy organization, global in scope, originally founded by Dr. Sydney Wolfe
Dr. Wolfe has been the head of the Public Citizen's Health Research Group for two decades
and is the author of Worst Pills, Best Pills.


The links listed below cover information that can take days to review and absorb. The material is
literally mind boggling.


http://www.pbs.org/healthcarecrisis/Exprts_intrvw/m_angell.htm#Top