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.

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

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

http://en.wikipedia.org/wiki/Marcia_Angell

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

http://en.wikipedia.org/wiki/Sidney_M._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.

http://www.worstpills.org/

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

http://bostonreview.net/BR35.3/angell.php

http://www.citizen.org/Page.aspx?pid=183

http://www.//www.citizen.org/Page.aspx?pid=2366

http://www.citizen.org/Page.aspx?pid=2361

http://www.citizen.org/Page.aspx?pid=2506

The Long Haul

My feeling is that for those parents who lost children five or more years ago, the mantle of grief becomes less and less identifiable to the outside world. The startling eye-blinking brilliance of our grief, the palpable force-field of the initial shock and pain that defined and announced our presence to others in those early months dims. But the truth is, the less we are recognized as bereaved parents by others, the more strongly we are becoming identified with the changes that have occurred as a direct result of our unthinkable loss. This is confusing. We may appear to be "back to normal," "recovered," "adjusted." Nothing could be further from our inner realities than this rather casual assumption.

I wrote the following email to Ann Finkbeiner, author of After the Death of a Child, because I wanted to thank her for her willingness to explore a subject few are brave enough to face--lifelong grief; grief that may be considered "manageable" in the simplest sense, but endless nevertheless. It feels to me that the assumptions of others demand we disguise our long-term emotions in exchange for the trappings of social exchange and acceptable behavior, something I admit to doing, but about which I am always angry. I appreciate her efforts to reveal an inner domain too many are too willing to ignore.

I apologize for the intrusion. I am reading your book, After the Death of a Child, and only wanted to take a moment to let you know that your interviews with bereaved parents, though conducted more than 15 years ago, remain some of the only contributions to grief literature that address the truth of the experience.

You probably still receive emails from parents and possibly professionals in the field of grief support commending you on your work. I did not know you were a Science writer when I tried to find out more about you online, and I am making the assumption, based on your published work, that it was the only material on parental grief you published. I wonder if it is not the most powerful in terms of its effect on so many who lose children and seek the support and knowledge that others further along can provide.

Though perhaps not vetted scientifically or peer reviewed, I believe it is seminal in the field of parental grief. And it is most especially relevant for parents who have lost older children. For a catastrophic event that occurs as often as anything else occurs in nature, the deep levels of collective cultural denial and avoidance are stunning in their scope. We are, those of us who have lost our older children, pariahs. Of this I am convinced. And though your kind explanations of why this happens are forgiving and generous, the fact remains that we are cast out in such a profound manner so as to threaten our continued existence. This, in addition to the guilt we ourselves feel, is more than enough to render even the strongest among us defenseless and more than vulnerable to defeat. I am sure, given the loss of your own beautiful son, that you understand.

She responded with a very kind email. And she does understand.

Recent Reading of Interest

Most recently, I have come across the following books and a few links to blogs that have had an impact:

The Center Cannot Hold: My Journey Through Madness by Elyn R. Saks
An amazing memoir about a woman who battles schizophrenia for 20 years and is now a tenured, endowed law professor at USC. http://weblaw.usc.edu/contact/contactInfo.cfm?detailID=300

Her work in the field of mental health and the law is seminal. Her story is inspirational in terms of finding a way to live with extreme emotional and psychological pain and despite the overwhelming disapproval and censure of others.

After the Death of a Child: Living with Loss through the Years by Ann K. FinkbeinerAnn K. Finkbeiner
I don't usually gravitate toward, or read, grief books but this is one of the best for bereaved parents after several years have passed. The interviews with about 30 individuals reveal several painful truths about life after the loss of an older child; truths that are probably universal, but are not often discussed. I would not suggest this book for newly grieving parents, for those more than 4 or 5 years out, it is very affirming.

Bereavement Blog
This is blog is written by a psychologist in Arizona who specializes in working with bereaved parents. It feels a little "out there" at first, but her commitment to honoring the pain and challenges of parental grief are apparent. She is also the founder of an organization called MISS (more on her blog) that offers assistance in many forms to grieving parents.

http://drjoanne.blogspot.com/

Article on Grief in the new, upcoming edition of the DSM V
This is an article in a blog written by a psychologist about the latest controversy surrounding the classification of grief beyond 2 weeks in duration as a treatable disorder in the latest edition of the DSM V.

http://www.psychologytoday.com/blog/dsm5-in-distress/201203/more-65000-grievers-must-be-heard-and-should-be-heeded

Tourette's

At one point in the last couple of weeks I noticed that I seemed to have found a place to settle. The clawing pain of grief diminished for some inexplicable reason. No, not diminished. That is not the right word. Nor is lessened. It has been reformatted. It is still the wound that it has been and will always be, but like a metamorphosis that occurs in nature when a bud becomes a flower, or more to the point, a maggot, a fly, the shape of that wound is changed into another form. I mean to imply no sense of growing beauty or the equivalent of a creative spiritual expansion. Growth, change, does not always mean something larger, more highly evolved in any spiritual sense. Depth perhaps, but not necessarily grandeur. If an explanation is necessary here, think of cancer. It grows. In fact, there is probably no better, more appropriate description of the power and force behind the concept of growth than this hideous disease. There is an amazing, breathtaking, horrifying expansion in that growth, literally and figuratively. But no one, other than perhaps a research scientist, would ever equate the cellular holocaust unparalleled in nature that is cancer with a divine largess.


What had happened to create this subtle shift in my interaction with my own pain? And more importantly, how is this shift manifested in a way that I was able to notice something different in my own locomotion?


Initially, though not exclusively, I recognize the change because I have become more engaged with certain circumstances at work. Not more interested necessarily, but more aware. I am feeling more irritation with various situations, roadblocks that I know my years of experience as a mid-level manager and an executive assistant can mitigate. What for four years has been the fulcrum of extreme anxiety and an overpowering need to escape was now a slow-churning axle forcing forward an urge to participate. To be sure, I had many times wanted to intercede in situations where I knew my knowledge would be of help, and on several occasions I had even made the attempt. But invariably those attempts fell short or were self-aborted. Nothing could matter, nothing could hold up as "worth" doing in the face of Maxx's death. And, let me be clear. The activity, the slow, agonizing self-initiated movement associated with "participating," even minimally, will never be the equivalent of a living son. I must qualify and hedge all around the kernel of absolute truth in any shift I am ever able or likely to make. Apart from my daughter's life, nothing in my existence, no creative spark, no desire to re-engage, no presence or activity of any kind, will ever be the equivalent of my son alive.


That said, there is ineffable change. And that shift is one that is growing, haltingly, from inside barren depths out and up, toward breath and a lighter dark.


And while I am sensing, and to some degree, acting upon this turning, I am not fully certain that work (a job) is where I want this growth to begin. On the other hand, where else(for most of us)does one first notice any subterranean movement? In dreams, I suppose. There is that. And I have had those lately. The specifics are gone, but I been left with fleeting feelings of having been with Maxx in happier times. More a visit, than the usual desperate efforts to save him. I don't explore these. There is not really enough to explore, rather it is like catching a scent on a breeze-- vaguely identifiable, then immediately vanished.


Still, where else can I begin to work joints and muscles stiffened by grief unused to the stretch of thought beyond the confines of loss? There must be a first place. A first door slowly cracked open through which the fetid, moldering air or sorrow is allowed to escape. But I am hesitant. Mistrustful. And there is a sense of betrayal that lingers, a bitter mist around anything I might explore. What does this mean for my grief, that which has been my connection to and expression of love for Maxx?


No answers. Just a form of ceaseless jerking. A kind of Tourette's of the heart.

A Foothold

About a year ago I joined an online website for parents of children who had died of cancer. The specificity of how Maxx died has assumed, over time, an increasingly important place in the panorama of my grief. Parents of children who have died of a terminal illness experience a particularity of pain devastating to one's identity. We watched our children die. We watched them breathe their last. Some in our arms. Others, like my son, intubated in ICU. We could do so little. Ultimately, we could do nothing. There is no way to fully communicate the horror of this passage through hell to those who have not themselves been pulled kicking and screaming into the vortex. No one wants to hear, nor do we want to speak of these tortures as if we are describing the ingredients and directions for making a pot roast. It is too large to bracket with words. Chemo, surgeries, bone marrow biopsies, diarrhea, bruising, rashes, nausea, needles, tubes, Pet scans. Blood. Frantic trips to ER for fevers. The indignities suffered. The body as it sickens, especially in a young person, a child whose very nature is a joyous explosion toward growth and life, is a dreadful dissolution to observe. The child born. The child dying. The parents watching. It is unimaginable, even as we were witnesses to its occurrence.

Most of the parents on the site are at least 20 years younger than myself. Their children, when they died, were often between the ages of 2 and 10. Most, not all. Some, like myself lost adolescents, or young adults in their late teens and early twenties. The age differences in a child who dies from cancer are not insignificant, certainly not in terms of understanding what is happening, but the experience of literally watching one's child fail and die from this devastating disease brands one with a livid, ropey, aching coil of tissue that constricts the heart and mind.

Many of the women who post on this site are attempting desperately to regain a foothold in their lives and there are many who appear to manage this not without difficulty, but overall fairly well, particularly when there are younger remaining siblings. There seems to be a point at which a bereaved mother has determined that she must live for her family, if not for herself. And while this feels right (not one of us would willingly absent ourselves from our remaining children's lives) I also think there is not a small element of self-sacrifice at work here. An expedient way of sidestepping the central task at hand--what do we do, how do we live with this grief in a way that does not invoke and accept the dogmatic obligations we, as women, believe is our collective destiny---to care for others?


This is a large and complicated subject and to write about this requires care and a delicacy that does not lend itself to either rapid thought or composition. I am not finished with this process, but I want to say this much for now.


I no longer think much about fighting for my life in terms of anyone around me--either my husband or my daughter. I tried hard to believe that my existence had some meaning either for them, or in this world, that to end my life would "destroy" them. And though this was probably certainly true, for whatever reasons, (perhaps my pain was too all consuming, too "selfish") it never took. Living for them felt like just another tiresome extension of what I had been doing all my life in some fashion ---living for and through someone else--seeking approval, validation, acceptance, love. "Don't hurt yourself because you will hurt them and they've been hurt enough."

Granted. But the brutal truth remains that I was so demolished, so truncated emotionally that eventually I found myself unable to respond to their pain, or comprehend how they were managing to survive. This journey, as I have said, is treacherous and not all change is "good." In their anguish over losing Maxx, neither my husband nor my daughter turned to me, nor did they want, need, ever ask for, or welcome my efforts to support them, sporadic though they were. I'm not certain that I could have done anything to help them in any case, probably not, but I mention this because my initial and primary reflex was to turn away from my own agony in a frantic effort to comfort another, albeit another loved one.

When I realized that neither one of them needed me in the way I felt they should, I was not only deeply hurt, but felt their withdrawal as abandonment, and to be honest, it was. We each in our own way was forced to abandon the other if only temporarily in an effort to stay alive. I couldn't understand that then and even today, have trouble accepting what happened. Ultimately, they are processing their grief in a manner entirely inconsistent with my own. Understandably, (I knew this then, and I know it now) neither was able to step into my particular circle of hell. And why would they?

Here is what I know about myself today. My capacity to love as deeply as I did is not the same. I have not saved myself to the extent that I'm still here because I love my remaining family. Of course, I love them. That has never been in doubt. But I do know that my survival thus far is not because loving them ensures my continued existence. Nor am I willing to admit it is because I love myself. I am here because I am here. I can't say why.

Enduring

A friend recently wrote to me:

"I feel as if I've hit a new bottom. After over four years, it doesn't seem possible that I can feel worse, but I do. This is unbearable."

Here are my thoughts on what is and is not unbearable, and though I too have uttered these same words, I have begun, of late, to alter my thinking about the definition of the word--unbearable.

I no longer believe there is such a thing as a "bottom." No "low as you can go."
Grief is a free fall. It is fairly constant, this sense of having slipped through space and time. Occasionally, for brief periods, one can feel as if held aloft on an invisible current of air floating without effort. Remembering how simple it was to simply "be"-- before the supreme effort of staying perched upright took every bit of resolve one could muster at any given moment. Soon enough I am sharply edged back into the awareness that I am unmoored, hurtling, struggling to reorient myself to myself. Finding my bearings in empty space, measuring my positioning against a vast nothingness. A ceaseless mind-numbing self-correcting wild gyration, not only to the facts of my life-- the day to day realities all of which include at every moment of every day, the brutal knowledge that my son is dead--but to the very core of who I thought I was--the now disappeared woman.

And what I used to believe was unendurable, unbearable is, sadly, quite "durable," and despite what we, the aggrieved say, how we will tirelessly describe our daily pained existence, actually quite bearable though not to be preferred in any sense. We are not only not dead (we endure), we are bearing our pain living in whatever way we can--upright, free-falling, crawling.

The hard reality, the simple almost revolting fact of the situation is that if it weren't bearable we would expire from the intensity of the sensation...yet we don't. We are living still, and by virtue of that physiological truth, we are bearing what feels impossible. Whatever the stories are that we have to tell ourselves not to die, most of us are doing it.

For my thinking, and this is not as implausible or unthinkable an alternative as any of us would like to believe, but when this deepening sorrow becomes truly unbearable, each of us will find a way to end what we can no longer endure. This should be stated and acknowledged. There is nothing here that cannot, should not, be said.

The horror of this grief for some of us is that we DO bear it; we DO endure. There is no escape. It is all around us, in us, all the time. And there is guilt in that. Another seemingly unbearable emotion. That we should live and they could not. Some of us will make it, others of us won't. But until we aren't here anymore, we are, in fact, bearing it. We do endure.