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.

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.”

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.

20 Months

Hold quiet the bearing
of this grief.
Be still in your mind.

Be not the shell-shocked soldier
gazing hard at an indifferent sky
nerves zinging with the clash of
two realities
seeing his eyes wide and glazed
with fear and disbelief.
That was my face too, the inside one
grief-spattered for what remained
of our lives together
his soon to be a memory.
Explosions surrounding the shallow ditch
where the two of us huddled
folded over around the soft bits as if
we could protect ourselves
from the unbearable piercing to come.
No longer able to hear (though I did)
following with bleary sight
the slow leak of my blood
mixing with his
the leak of our lives together
into the frozen ground.

Hold quiet the bearing
Of this grief.

No one would know
the rip of my heart
nor suspect
the imposter conductor who
directs the sluggish workings of a
Frankenstein woman.
They are willing to accept my
fallen limbs
refuse to notice the
netted black autopsy stitches
appearing indelicately above my collar
threaded in a jagged Y to my throat.
Primitive butchery
age-old patching of flesh
to stem the gush of a mother’s sorrow.

Hold quiet the bearing
Of this grief.

And they will
let me live among them,
if I wear lipstick
or occasionally a scarf.

Though it would be easier to die.

On August 6th it was 20 months since Maxx died. I don't want to begin this blog with the history of what happened. I don't know how I want to begin. I don't even like the idea of blogging, telling anyone who happens to find this, how I feel...about anything. It feels wrong. I am a very private, solitary person. I am of another generation, born in 1952. The public sharing of self that has come to define the culture in the past 20 years is not an activity, a persona, with which I am comfortable. I have written about the death of my son in a journal of sorts. Not often, or regularly, but I have put my pain into words.

And though this public forum feels and seems alien to me, I admit that I have searched endlessly in my grief for similar stories of the deaths of young adults from cancer. I have found many, but Maxx's case was so unusual, induced by the immunosuppresive drugs he was taking to keep his Ulcerative Colitis in remission, that there are no other stories anywhere that seem to touch all these unimaginable, unbelievable slipping down circumstances that piled, one upon the other, as we all tumbled headlong into his grave. He was strong, his chronic IBD was under control, he was set to begin his senior year in college. Otherwise healthy, athletic, intelligent, funny, kind, he was diagnosed as a result of feeling unwell for about a month, on July 13th, 2007. He died 5 months later on December 6th of Hepatosplenic T-Cell Lymphoma, Stage IV at the age of 21. Seventeen weeks of horrific decline after 20 beautiful years filled with the joy of his presence, hope and excitement about his future. Gone. Extinguished. Perhaps 30 other people in the entire United States have died of this disease as a direct result of the same recombinant medical protocol with which Maxx was treated.

There is no one who has lost a child to cancer who does not suffer the agonies of the damned. It does not end. It changes a bit here and there, the context in which the destruction of a life (his and ours) manifests, evolves. But it is forever. Perhaps I have something to share, perhaps I don't. This month, our old family birthday month (myself, my daugher and Maxx) feels so brutally empty. Last year, though we felt stricken, remains a haze. This second year brings with it deeper nuances in the landscape of finality. I wanted to mark it, somehow. This was how I chose to do so.