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.

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.)

http://www.thepowerofforgiveness.com/about/peopleinthefilm/Luskin.html /

http://learningtoforgive.com/

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.

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.

http://fatdaddysfarm.blogspot.com/2012/04/spotlight-on-lisa-wendell-and-gabriella.html

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.

http://thatwoman.wordpress.com/2012/04/24/the-good-dr-drugs-trust-selling-of-hope-part-3/

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.

http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm

Passing

It is again November. The fourth November since Maxx's death. I say death because I don't believe he "passed" anywhere. He died.

When I was 32 , a year before Maxx was born, Steve, Megan, then 3, and I lived in a cramped two bedroom duplex in Alhambra. One afternoon in late May of 1985, my mother, who had been gravely ill for almost four years with metastasized breast cancer, had collapsed on the kitchen floor of her apartment about 40 minutes away in San Pedro. The 62 year old divorcee who lived directly beneath my parents in a two bedroom carbon copy flat, heard the sudden dull thud of her fall as my mother stood at the counter pouring hot water for a cup of tea. The neighbor rushed upstairs. Later, that same woman who, by the way, ended up marrying my father not quite two years after my mother died, liked to "thank god" that she had been at home and not out as she usually was at that time of day performing her rigorous roster of pastoral duties as an ordained minister of the Unity Church. Wasn't it lucky that she hadn't yet left and so could be with my mother while she "transitioned?"

Sitting on the kitchen floor, in a puddle of Earl Gray holding my mother's hand, waiting for the ambulance that would take her to the hospital where she died several days later.

"What luck that I was there with her, or she would have been entirely alone," she would comment at every opportunity eying me like a scrappy nasty tempered plucked parrot.

"You know, Lis, (she liked to use my family nickname without ever asking me) sometimes your mom would just sit there in the kitchen and bang on the floor to have me come up and help her put on her bra when your father was gone." My mother would never have done such a thing. Like some kind of caged chimpanzee.

I never stopped hating this woman even though she took good care of my father for the next 20 years, until he "transitioned" a year ago from Alzheimer's. She also assisted him in "transitioning" through his comfortable pension and is now living on whatever he left her in his will. Honestly, he was a bastard and she did me a favor.

Before she used the word in this context--to somehow soften the gut-wrenching details associated with the slow disintegration of the physical and emotional body--I had never heard this phrase and so was both aghast and horrified at the banality of the statement. "Transitioned?" Into what? Where? Having had no prior experience with death, or those who hovered at its edges, I had no idea at the time what the term meant, Apparently, this is what was (maybe still is) said when someone loses consciousness and "passes over."

In any case, Maxx did not pass. He died. Four Thanksgiving's ago. Four Halloween's. Four Christmas's. This week I have come apart. Megan spoke of cellular memory. I have heard the phrase and I understand it's meaning. This does not stop the shock that I register at the force with which it takes me down.

It is the change in seasons. The color of the light in the sky. The early chill in the evening. The darkness at 5:00 pm. The need to dress more warmly. A time when I used to begin buying warm socks and sweatshirts, hats and another umbrella. Now, these are just the days I crawl through to get to December 6th.

They are vaguely defined "people," and I used to be a nameless one among them. Accepting and accepted, they live with one another beneath that light, and whether it lasts forever or for a moment, there must be a kind of closeness while they are enveloped in the light. I am no longer one of them, however. They are up there, on the face of the earth; I am down here, in the bottom of a well. They possess the light, while I am in the process of losing it. Sometimes I feel that I may never find my way back to that world, that I may never again be able to feel the peace of being enveloped in the light, that I may never again be able to hold the cat's soft body in my arms. and then I feel a dull ache in the chest, as if something inside there is being squeezed to death."
Haruki Murakami
The Wind Up Bird Chronicle

November, 2011 Four Years Ago

Four years ago, I lost my 21 year old son, Maxx Wendell, to a rare, aggressive T-Cell Lymphoma. This cancer was the horrible, preventable result of having been prescribed medication to keep his ulcerative colitis, a condition with which he was diagnosed at the age of 12, in remission. Medication about which there was no public disclosure regarding its potentially deadly consequences. That is another story.

Losing a child is insanely catastrophic. Literally. Those who live with this loss will understand immediately. A tedious introduction to the devastation of grief is unnecessary. Others can never imagine the depths to which we descend, the hollow silences into which the whispers of our lost past penetrate, the sound of our own internal howling.

In the years since Maxx died I have written thousands upon thousands of words in efforts to reclaim what I can only think of as my own brain. My sanity. My footing. And still, I am not able to say that any of my efforts have made a difference--whether or not my position in space and time is really more about finding my way back to kneeling than being flattened into the earth.

I am still here. I am still writing. Seems I cannot stop. Don't know why I would. Can't watch him grow, Won't be at a law school graduation. Won't be at his wedding or the birth of any children he might have had. There are no more gifts to buy, no more dinners out, no more wildly funny or thoughtfully considered conversations to have. No more Maxx. Not in this life with his family where he belongs. With his beautiful older sister. With his dad. With me, here, the mother to whom he gave birth. Here, where he should be until I die first.

So... I will write. Maybe someone will read.