You have pulled me back to you for some yet unknown reason and on this last day by your bedside, I’m getting ready to cycle back on my own elliptical trip to motherhood away from you. I cannot say, dear mommy, that I feel more sadness—at least not at this moment. In fact, in many ways, I feel far less. I don’t know exactly why. It may be because I keep my feelings at bay—a necessary adaptation to being in your presence. It may be because I have felt so many emotions, often in extreme or potent fashion, that there’s just less sad left to feel.
Or it may be because I accept the whole process of your dying—your timeline, your needs—surrendering in a far better way to the inevitable lack of control that I have rebelled against for so many months. I suppose, too, somehow my crying, my wailing and wallowing in my own muck and mire just seems less appropriate and out of place in the face of your ongoing dignity with which you approach your own death.
Remarkably, it seems mystifying to me that you could be expressing dignity in the face of cancer and Alzheimer’s, with dirty wet diapers and bibs, your straight, white hair flying wildly behind you on the pillow as you continue to hold on fiercely to two teddy bears from your youngest and eldest daughters.
Yet somehow you preserve yourself with just that: a serene quality that comes from somewhere else—a not of this earth kind of thing. You release love and life entirely, attaching only temporary meaning to the props and decorations that identify you now as my mother. Actually, it almost seems as if you are trying to say to me through these scenes, “do not weep so…this ultimately is a much smaller thing than you think, dear daughter, the seemingly unattractive way I die.”
It’s as if you radiate questions like “what sort of compassion would you have exercised for someone not so personally attached to you had you not seen me drool, heard me jabber nonsense, seen me lie in my own waste.”
Loved Into Death
From where I sit it feels as if you offer yourself up yet one more time, sharing infinite lessons of love and light to all around you. At least that’s what I see when I get outside of just the ‘you’ I know was my mother. For I watch the delicate yet sturdy expressions of love and compassion as your nurses tenderly touch your face while giving you your medicine, stroking the sides of your throat, urging you to swallow your morphine to reduce your physical pain.
I watch your caretakers feed you cereal, adjust your head on the pillow, turn your body to prevent bedsores, all the while talking words of affection, encouragement, and humor. You are not their mother, yet you are comforted just the same through kindnesses springing from an impersonal source, being loved into death like I imagine you were once loved into life.
The Still, Small Voice
And ultimately I am struck not by the sadness of watching your earth life leak out of your very specific body I identify as my mother. Rather, I am struck by all the expressions of a still, small voice behind each act of caring extended, as each person responds to the soul dignity you miraculously emit like radar, invisible in its source yet manifested so visibly in each literal caress.
I am honored by the energy of it all driving each act I only later come to name as love. Ironically, I care less and less about the specific vehicle of what seems like a terminal condition—the Alzheimer’s and cancer eating away at your thin, frail body, with my previous interpretations of despair and tragedy all but gone, at least for the moment.
For in the end I gradually catch the faint but increasing whiff of your gift—that you keep your human heart beating for not just me, but for all your daughters as well, trying to communicate for as long as you can make it so, how much you really loved us. And while the details of our lives together continue to silently fall away, what remains of your final yet everlasting act of love—to crawl up onto your own personal cross, arms outstretched towards infinity as if to say “I love you this much”…
… And months later, with tears streaming down my cheeks you have moved on, resurrected to another place of grace, with the Giver of the gift who moves us all to acts beyond our human capacity. And I am breathless and stalled momentarily in my human loss of your steady face, eyes that once beamed, missing your example and your effort.
Yet I continue on even though I’m at a different stage of pain, one which sometimes sends me reeling. I somehow manage because of what was given to me—that final act of love that you so graciously expressed. I manage because I know that you have been redeemed in parallel fashion much is you redeemed me. Without any doubt your effort to send one final message through the dignity and effort of your dying process thunders a love so loud it is unmistakable—a love given through great suffering only to sore and transform.
Never in a million years did I think it would be this difficult just to get a colostomy after struggling with 14 year tumor excision history. For some crazy reason I was under the delusion that I’d be up and around moving relatively easily a couple of months after the initial surgery. Ha! I couldn’t have been more wrong. No one knows if they will have surgical complications. I was in that category of 100% believing it would be a trajectory of healing that had nowhere to go but up, forward, continually gaining strength, and improving. I suppose I was naïveté on steroids, confessing to being an optimist besides.
Years ago a former therapist told me only optimists get hurt. At the time I thought that sounded sort of odd. Asking her to explain, she laid out the following: pessimists expect the worst and are therefore rarely disappointed when something goes awry; Realists accommodate to whatever outcomes occur, using the intellect to manage any disappointments that come their way. But optimists, rarely fearing negatives, possess an expectation all will be well. The ship leaves port to arrive at the desired destination assuming all will be well. The hitch? The slide into disappointment when things do go wrong can be disorienting, sometimes debilitating, throwing the ship way off course, adding insult to the original injury, becoming unmoored.
Success Not Success
I could tell you the first surgery to remove the tumor and subsequent body parts that hosted it was highly successful. It is the truth. My insult occurred when three weeks later I had to have a second surgery to remove an unanticipated kink in my colon. Shocked, pissed, depressed and, well, pissed some more by the entire set back—which was substantial—my recovery has been slowed, sometimes feeling glacial. This event was peppered with other lesser setbacks such as UTI’s, lumbar compression fractures exasperated by required bed rest, wound healing that has been slow, etc, etc, etc!
In hindsight some of these setbacks feel more like nuisances at this point though not always. Rather, it is the aggregate of complications and slowdowns, the cumulative totality that has been the most difficult to adjust to, adding fuel to the disappointment fire. My intellect informs me, and rightfully so, this could be worse. It also reminds me of people who truly DO have medical situations far more dire and problematic than mine. After all, I am tumor free for they have removed the body parts that were its host. There is no “there” there! To say I remain incredibly grateful is the understatement of the century.
Yet still I grieve. Still I am pissed, at least at times although it does seem to be waning a bit. Feelings of loss are not just for missing body parts. Rather, they reflect an energy system that shrinks away from a physical life I once took for granted. They are for a psychological and emotional operating system of navigating the world and my place in it, as if a supernova is in the process of burning itself out in my small personal firmament.Turning that two ton ship around from optimism to realism necessarily has to be done by degrees much like a ship’s navigation.
This way of looking at my world involves patience, honest and authentic acceptance, and faith! The faith in not only things will be well, but that they already ARE! That the process of degree by degree learning to think and feel differently is beneficial and may even lead to a kind of salvation regardless of the slow-motion, occasionally agonizing discomfort that I feel going through it. The trilogy of qualities listed above have always been challenging for me, especially patience. I’d like it all healed NOW, body, mind and spirit!
Turning in Slow Motion
Having no other real choice, I trudge on in fits and starts with a new emotional, psychological, intellectual and spiritual mechanism that requires patience, forgiveness, compassion and understanding. Ain’t no other way. I guess that demonstrates at least a modicum of acceptance. I definitely feel the benefits of these qualities as they slowly come into focus, albeit it ever so slowly—degree by degree. Oh how I wish I could be on the other side of it. Of course that is not how evolution of any kind operates, at least not until a momentum has built to a critical mass creating a new order.
I know I am blessed. I even imagine, truly, in the end I will view this entire surgery, setbacks and all, as an unexpected gift, besides the obvious life saving measure that it is. In an odd way I’m beginning to see it has merely been a delivery system for a change that has been required of me all along: a blessing in disguise as a medical event. To know thyself one often needs to be tested, a catalyst of sorts, to hit bottom as it were. I may have unknowingly generated such a catalyst.
A New Radar
Some years ago after Michael J Fox had his Parkinson’s diagnosis, I was struck by what for me was a profound statement he had made. It went something like this: I could never sit still until I could not sit still. The habit deeply ingrained in an interior way of how we think and feel, how we approach our world, often requires something cataclysmic to get our attention. I see the value in having such an event, even as I have resisted and cursed it at times. “Lucky is the man who has lost his leg to find out what he is truly made of—not grizzle and bone. Rather, of a sturdy faith in the unseen ineffable Self.”
Suicide! With Kate Spade and Anthony Bourdain’s recent suicides, a national conversation has occurred. It happened after Robin Williams’ death as well only to fade away like so many other shocking events in contemporary life these days. People are genuinely sympathetic and empathetic for a time only to fall back into daily living. It’s natural enough, of course. Read more →
It may just be your average “age associated memory loss” I’m experiencing, the one most people in the mid 60’s undergo. But I have to tell you, it’s alarming when someone younger is trying to tell you something that is a NLO (New Learning Opportunity, allegedly good for the neuronal net) and you can’t really follow. In the last few years, it has become increasingly difficult for me to learn new things. I swear I can feel the brain creak, struggling to function as it gets slower and slower with each passing year. Read more →
How long it takes to get to spirit. Whether you believe in God, have a knowingness about Him or are an atheist, there is a spirit in mankind that is undeniable. I recently finished When Breath Becomes Air by Paul Kalanithi about his life and death on the planet. In the living parts he clearly describes the tension between the two states: of the linear, scientific world and that of a kind of awareness, consciousness or spirit. Oh, he doesn’t use that term exactly. Rather, he talks of meaning, morality, ethics, connections between people in such a way as to define the untamed heart. Channel it as he might, he seems to bypass the heart to the brain, the mind, as the knower of things, the mechanism for meaning, or so it seems. He thinks of it as his identity, the mind, and yet he learns a more complete lesson in the end from metastasized lung cancer.
Being Loved Into Death
For it is not until nearly the end as he approaches the culmination of a career “cut short” as a promising neurosurgeon and scientist that he is required to leave the brain behind. Ostensibly, he is drawn to the wordless yet highly communicative heart as he defies his scientific linear training as a physician and connects only with spirit–his wife’s, his infant daughter, his parents, siblings and close friends through love, the unmeasurable ‘mechanism’ that is all of us. Always present but taking a backseat in the physical world, the Spirit lies in wait, our true nature revealing itself, silently, breathlessly, subtly, until we are ready to live on the buoyancy of only that. Kalanithi seems to convey that Love or Spirit carries us from one world to the next. And so it was, as brilliantly, as giving, as kindhearted and hard-working as Kalanithi had been as a neurosurgoen, always striving towards accomplishment, no matter how noble, that ‘his’ Spirit finally, patiently requires his attention through a different kind of giving of himself. With a foot in one world, he straddles the next describing his ‘death’ experience.
I loved this book, the Breath–Air book by Kalanithi. But oddly, like all of us ensnared in the body, I was waiting for his final insights sooner, restless for spirit to reveal itself through the written word. Finally it came although from my perspective, it oddly was the deathbed scene with his words to his daughter, and wife’s conveyance post-passing afterwards, that the true nature of the spiritual man known as Kalanithi is revealed. By that I mean that even though using words to communicate, it is only in the incalculable energy and action of a lifetime of intention that it becomes evident, that and the gift of his shared death. Implied in this is knowingness. We know it when we see it as did he. Ironically, so often Spirit reveals itself as an aggregate looking backward even if through the distillation of a high voltage moment.
What Kalanithi took a short lifetime to discover is that his life’s meaning through work, giving and connecting is part of his identity as neurosurgeon/scientist, it is not the whole of it. While his words throughout the book, the description of his struggle as a physician, son, husband, and ultimately father is carried through linear, descriptive fashion, it is his effort to give of himself through sharing the ‘death’ process that reveals his spirit. His initial intention to help relieve the suffering of mankind through his profession sets the stage. The final eight or nine months he writes the manuscript however renders the true language of Love, his ‘spiritual identity,’ if you will. Ultimately, the body with it’s ever-fascinating brain is merely the delivery system of the less visible but more potent heart, the seat of Love that operates both here and in the hereafter.
I often wonder, what would I do, how would I behave, could I give anything to anyone, let alone a wider ‘audience’ as Kalanithi has done, if I knew the impending demise of my earthly body was ticking against a more specific clock. Sure I know the idea of that. But of course the idea is not the knowing. ‘Knowing about’ is never the same is knowing. The soul lives on. The spirit that reveals itself to me in flashes continues once the body ‘gives up the ghost’, of that I have no doubt. And yet, trapped in time even when it seems there’s little of it left, what would I choose to do, how could I extend myself to others, how would I spend my precious final days, weeks, maybe months offering meaning to anyone?
Jocelyn P. Newark, R.N. talks with Paul Kalanithi, M.D. Resident in Neurological Surgery, at the Stanford Hospital and Clinics on Wednesday, February 5, 2014. Stanford University ( Norbert von der Groeben/Stanford Hospital and Clinics )
None of us can know until we ‘get there’ if in fact we have any forewarning at all, that our time is truly running out. And yet, Kalanithi’s thought-provoking book prods everyone to examine themselves, for me to examine myself. How can I commit to extending whatever gifts I may offer to others even if I have no information about life’s deadline. And even if I don’t have an exact answer now, there is an answer. It is my charge to find it, stumbling through to the end until it– Spirit–presents itself as to purpose and expression. After all, at the end of the day, Kalanithi’s book is not just about his death, it is about his life. What’s more, it is also about our own, about what it means, about the aggregate of a lifetime of intentions and our expression through one final gasp.