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.

Where I Am Now

I don't know whether it is appropriate to share these thoughts. It is my response to the entire (for me) delusional idea of "moving on." I appreciate that the vocabulary around grief is limited and that there is no easy way of describing the particulars of such individual devastation. So often it feels, because of linguistic limitations, that the failure of words to capture the depth of emotion, forces us to believe that grieving is an all or nothing process. Either one "moves on," bucks up, behaves appropriately, finds "hope," or one becomes a burden, a drain, a sloppy, self-pitying, self-indulgent mess. How disgusting. How like a pathetic emotional woman. A woman with no guts. A leech, a drain. Kicked to the curb. Cut from the herd.

But I think it is much more complex than that. I believe that we can be broken, destroyed, gutted and strong enough to accept our half-lives simultaneously.

So, here goes.......

The difference for me is that I am not "moving on." There is no "on" to move to. Yes, I live. That does not mean there is substance to, or meaning in my life.



I will say it. There is no real reason to live my life. This is not about suicide. Nothing so final. Losing Maxx ended my existence in the only way I knew I could be alive--as his mom. He completed the circle and it is now irreparably broken. Some people do not make it out of this disaster "alive" in the way we know and expect life to be (or become again), and I believe I am one of those.

I have not come to this lightly. I do not expect others to understand. My own particular reasons for why and how I have developed this way are unique to me, as are any of the forces that shape our lives, and they do not allow for any external or internal reality other than the stark loss that envelopes me. This is not a popular, or even tolerated stance. Everything, everyone, pushes us mercilessly without exception, or a second breath, to rejoin the flow. I am not capable of doing this. I am, on the other hand, very strong and extremely capable at surviving. That is my habit and it is as powerful as my refusal to pretend that anything will ever be OK again. Ever. So, I am Sysyphus. I cannot live, nor can I give up.

I ruminate, I read, I watch films, I write the same things over and over carefully crafting descriptions of the same event--the end of my life. I obsessively examine what has become of my life both while awake and in my dreams. I stare at others in dismay and often through tears. I am drawn to the energy of the living, but I hold myself apart. Maxx was my bridge. And he is gone. Though, unfortunately, while I am strong enough to remain erect most of the time, I am not strong enough to build another bridge. Nor do I want to.

I have tried to be someone other than who I am for my daughter and to some degree, my husband. They are all I have left and I have no wish to hurt them. My feeling is that they will (and have) gone forward without me. And that is as it should be, but I can no longer live for them in a way that perverts my own authenticity so that they might have an easier time of it. I have my battle and they have theirs.Though I have wished desperately that my daughter could be a comfort to me (and I to her), this has not happened. I am as lost to her in the storm of my anguish as she is to me in the winds of her own. Steve stands by me. He is as ruined as I am.

All threads were broken, connections unraveled, and unraveling still. Here and there I am able to knot a few loose strands together strong enough to withstand the drag from one day to the next. But, I am alone in my efforts. There is no family. There are no friends. There is not now, nor has there ever been any safety net. I am one who put all her hope for a life well-lived in the hands of one beautiful child. And that beautiful child died. I was mistaken. I see that now. I made him responsible for my happiness and it is likely he felt that burden even as I denied it was happening. I loved him to distraction. How could he not have known? And this alone probably caused him additional pain, understanding that he was dying and that his passing would likely destroy me. What that must have done to him is a thought I can sustain only in short bursts, for the knowledge that I might have caused him more pain is unendurable. But it is what happened and there is no way, or reason to change, deny, reconstruct, or resolve any of it.

So, while I acknowledge the new realities that others choose and are able to build for themselves, I know this is not my path. At the same time, though everything conspires to keep those of us who have sunk below eye level from giving contours or voice to this pain, this is all I can do. The rest---all the various activity that defines a life is just so much badly hammered together scaffolding--precarious, unstable, destined to be blown away in the first fierce gust. When that happens, and it does and will for all of us, we have only ourselves.

Perhaps then, my choice, if one can call it that, not so much about where I won't go, as it is about facing down the demons where I stand now and from whom I choose not to run.

Shroud

I wonder how long I can write about this loss. Forever, I suppose. Though it makes me uncomfortable to leave the faucet open, so that the dripping never ceases. There is a precarious balance in grief. It is rather like a fine art that requires a certain mastery. There is a measured pace to its expression that is particularly so if one makes the choice to live in the shadow of its sacred darkening.

This is not an uncomplicated choice. It carries with it great risk because to follow ones heart in this way is to self-ostracize, to purposely select the shunned life. First one must make the decision to feel what one feels for as long as it is necessary. This alone can take years, I think, for the desperate need to avoid all that is frightful can be a powerful temptation. Easy, so easy to choose the soft drape of anesthesia, to fold oneself under the umbrella of pointless "doing," ceaseless, directionless activity. Easy, except for those whose demons turn the spotlight into the corners, keep the kleig lights on so that there is no darkened corner into which one can crawl. I am one whose mind will not shut down, whose crawlspaces have all been illumined by a power, it seems, that is not my own. Though perhaps I delude myself. No matter. The reality is that my room is awash with the stark, unforgiving light of my loss. So, the decision is made, or more precisely forced into existence.
Then, once the lines are cast, there comes the dance for survival. At every turn, an inconceivable stretch of one's limbs, a contorted reach beyond imagining, a wild flinging to ford flash flood waters where a moment before one had been standing on what was certainly firm ground.

Clearly, there is no choreographed sense to this danse macabre. It is more like being held captive by an unseen puppeteer whose abrupt movements cannot be anticipated and never controlled.

So, I write and I feel guilty for writing. I feel guilty for having come to this deep excavation, this place, this writerly "being" where I have longed to live my entire life-- carried here, not by some personal and laudable commitment of my own, but tossed along in the torrential current of pain begun with my son's death. I am guilty that the opening in my heart through which race all my deepest, most confounding sensibilities of "self " cloaked in the overpowering need to examine and comment upon each one, can only have been released in the bloodrush of my son's passing.



This is what my husband and daughter call my "drama." I "use" it to create and maintain a pall of unforgivable self-fulfilling misery, something around which they must walk carefully and through which they cannot penetrate. They cannot find me, see me, know me, feel me, unless they acknowledge the shadow that accompanies my every step. And though their naming is spoken most often in anger, they are right. My "drama" is my shroud. They do not understand, perhaps because they cannot see through or past their own anger and loss, that the shroud is not something I have chosen to wear in defense against them or the world, but because it has become my skin, a scarred inflexible patchwork of flesh grafted in anguish.