Posts under ‘death and dying’

On occasion I am profoundly moved by a film or a movie which actually causes me to look at life differently. These moments are few and far between in actuality, but last night on a Valentine’s date, my wife Mary and I experienced the profundity of The Diving Bell and the Butterfly in all of its cinematic glory. It is very rare for me to walk out of a movie theatre and feel that what I’ve just seen has changed me in a dramatic way, and this experience was certainly of that caliber.

For those of you as yet unfamiliar with the story, the film is an adaptation of the book by the same title which was written by Jean Dominique Bauby, a former publisher of Elle Magazine who experienced a massive stroke in the prime of life. Bauby was diagnosed with Locked-In Syndrome, a condition in which the afflicted individual is completely paralyzed—except for eye movement—but is fully cognizant with complete brain function and intellectual capacity. Hence, s/he is considered “locked in”. Through the efforts of his caregivers, Bauby was able to dictate his profound insights through blinking his eyes in response to the recitation of the alphabet. Letter by letter, he made his thoughts, wishes, and writings known, and the book was published shortly before his death in 1997.

Visually, the film is almost completely shot from the viewpoint of Mr. Bauby, using soft focus and other techniques to simulate how he might experience his visual field. Dream sequences are used to great effect, as are sequences in which Mr. Bauby consciously chooses to allow his imagination to bring him to beloved places and to relive peak (and less-then-peak) life experiences. Through the film, we understand that Bauby is struggling to come to terms with his maddening physical condition, the challenges of communication with the use of only a single eye, and his desire to make amends with those he has hurt. Unable to hug his children or comfort those around him, his desire to communicate his inner world does battle with his desire to simply relinquish his hold on life and sink into self-pitying despair.

Seeing such a portrayal of an individual’s struggle with absolutely debilitating illness puts into perspective my own constellation of infirmities. Taking into account my own collection of diagnoses—which, mind you, is considerable but wholly relative—I am moved to take a fresh look at how much I feel these conditions truly impact my quality of life and whether I can assuage some of that impact by simply shifting my perspective. The powers of the mind can truly help one to rise above the vicissitudes of physicality, and it may be time for me to take further action on that account.

So, what does it mean to experience pain and suffering? And what is suffering when one bears in mind the greater suffering of others? How great is my suffering in relation to that of a Sudanese woman from Darfur who was brutally raped and watched her husband and children be killed? How does my suffering compare to her desolation as she sits alone beneath a plastic tarp in the midst of a refugee camp on the border of Chad? I consider the stress I experience while sitting in traffic, running errands or trying to repair my Internet connection, and I think of that woman sitting under that tarp in the desert, utterly alone. Does this assuage my own suffering? Can I use this as a lesson?

As the sun streams in my picture window and I admire the lush greenness of the rhododendron that peaks through the glass, I also see the richness of my surroundings, the abundance of wealth and comfort in my home, the new cozy couch delivered just days ago. I see the rocking chair, the portable heater, the new computer and speakers, the hundreds of books and CDs, the beautiful art on the walls. All this is mine, and I take it for granted.

Considering that I just quit my job and now have the grace of time to remake my life as I see fit, I remember how large a role the pure power of choice plays in my daily comings and goings. Is it truly a source of stress to decide whether or not to go swim at the pool today? Need I truly allow my mind to worry about whether I forgot to buy cereal or not? How much stress and worry is a broken plate worth? Is a bathroom in need of cleaning or a pile of laundry really that important?

Mr. Bauby’s decision to eschew his initial desire for death was born of his realization that he still had something to contribute, and that the power of imagination and memory could take him to the places where he could no longer physically go. Completely paralyzed and dependent, I would say that Bauby had a right to pity himself and to sink into despair, and he surely availed himself of those emotions, especially after first regaining consciousness and realizing his predicament. Still, he did not live in that space for long, and Bauby’s greatest achievement is the fact that he shared that journey with the rest of humanity.

For myself, I have a personal goal of purchasing a copy of this profound and life-changing film as soon as it becomes available, and to force myself to watch it at those junctures when I’m losing hope and falling into despair over life’s circumstances. Perhaps I’ll make it a double feature in which I will also watch Control, a film depicting the life, struggles, and extreme depression of Ian Curtis, the lead singer of the post-punk band Joy Division. Diametrically opposed to Bauby’s story—but equally superb in its execution—the film depicts how one young man allowed himself to lose perspective and sink into depression and suicidal ideation just as his life was opening into relative fame, fortune, and new horizons.

Perspective is certainly one of the keys to realizing one’s relative place in the world and the profundity of one’s own suffering. As the bumper sticker slogan says, “suffering is optional”. But are we courageous enough to actualize that reality each and every day? We can only try, and when we succeed—if only for a moment—we can celebrate that moment when we did indeed find ourselves in that timeless space of true acceptance and equanimity.

And now the grief settles into our bones. Mary and I have been complaining today of profound aches and pains, an experience which my sister shares. Our muscles are like stones which have lost the long-ago suppleness of soil. Our joints ache and creak like wintry tree limbs. We move through a syrup of feeling, even as we unpack the car, wash clothes, and attempt to resume “normal” life following the experience of a death.

Today we avoided a neighborhood picnic, lacking all motivation for superficial conversation and pleasantries. At the supermarket, we ducked in order to not encounter someone who we knew would only drain us with her narcissism. Tomorrow, I work from home, and Mary enjoys one more day of bereavement leave. Tuesday, we re-enter the proverbial rat-race, even as we continue to feel like we’re still in a parallel universe, the Universe of the Grieving.

This special universe is inhabited by many, and even as some of us lose sight of it as we become enshrouded in the everyday world once more, a part of our heart remains in the Universe of the Grieving, holding the memories of our departed loved one in a special and tender place.

Pieces of my soul dwell permanently in the Universe of the Grieving, holding a spirit candle for my beloveds who have since left this earthly plane. The candle I burn for my step-dad glows most brightly, having only recently been lit. Some day another beloved’s candle will be the newest one to grace my spirit altar, but for now his soul occupies the center of that most sacred space, and I send love and light to him as he claims his most righteous prize.

This afternoon, I went to the funeral home and picked up my step-father’s ashes. A small, compact container wrapped tightly in cardboard and sealed with official notification of its contents weighed heavily in my arms as I carried it down the steps.

Once in my car, I sat in the driver’s seat and hugged that box to my chest, breathing quietly, feeling its weight in my lap. When I was ready, I placed the box gingerly on the passenger seat, and began to drive back towards my mother’s house, where I would deliver her beloved husband’s remains into her trembling hands. During that ride, I rested my right hand on top of the little box, just as I might rest my hand on my son’s shoulder.

About half-way home, I realized that I was carefully avoiding bumps and pot-holes, gingerly taking turns, as if a fragile and easily damaged cargo sat beside me. Perhaps that fragile cargo was actually my own heart, heavy with grief, relieved that his suffering was over, and worried for my mother’s future and well-being. Carrying those ashes was like being a solitary pall-bearer, shouldering a container whose contents were undeniably heavy, but whose ultimate goal was lightness and the shedding of the physical body’s weight.

Resting that box on the piano in the living room after everyone had a chance to feel its weight, it was so very apparent that he is not actually in that box. What is in that box is simply the remains of a body, a vessel, a vehicle that propelled that soul through this life for eighty years. That soul, that spirit, is now free, roaming a world of which we can only dream. Blessings on that soul, even as the ashes and dust and bone fragments which remain with us are scattered to the winds of the earth.

Tomorrow, we celebrate that soul’s accomplishments and that body’s life on earth. And then we move on without him at our side, but with him always in our hearts.

When someone dies, we take a breath and realize that a new chapter has begun. Where before we cleaned the commode and wiped a sweaty brow, now we sift through memories and personal effects. Where before we concerned ourselves with medications and symptoms, now we examine legal necessities and paperwork. While our loved one was living while dying, we were also living through their dying process, slowly letting go of the old earthly relationship as we opened to a less corporeal connection which loomed large in our future. As our loved one’s eyes began to focus beyond us in their softening gaze, we looked more and more closely for the subtle changes that might portend the end being near.

Once the body has been removed from the home and the hospital bed and other equipment as well, one must take stock of the space where the loved one lived and died, and accept that their physical presence in that space is now a thing of the past.

Next come the personal effects. A watch. A money clip. A ring. A necklace. The trousers hang in the closet, pockets still filled with the normal flotsam and jetsam of a life: wallet, keys, change, mints, candies usually carried for bank tellers and cashiers in stores, a handkerchief.

And then there are the clothes that hang in the closet, bereft of the body which once filled them. The shirts pine for a beating heart. The pants wish for legs to crease and bend them. The socks sit alone alongside the underwear and undershirts. The ties and belts dangle sadly like plants in a hanging garden. But a new life awaits them.

Food begins to arrive from caring friends and family. The phone is rarely at rest. Arrangements are made, and plans created. Activity is a welcome relief from the heaviness of mourning, yet too much activity can also preclude one’s feelings being actively felt.

On the physical side, one must ask simple questions. Are you eating? Are you hydrating? Can you sleep? Would exercise be a benefit to you now? A fine balance must be struck, whether it be emotionally, physically or spiritually. You walk a tightrope of emotional balance, and living friends and family offer guiding hands along the way.

Laughter, smiles, moments alone, moments in motion, the awareness of loss—they are all part and parcel of the unfolding of the days of mourning.

Today at 4:10pm, my beloved step-father left this world as we surrounded his bed to witness his final breaths. As he moved through the stages of the dying process over the last 48 hours, I became more and more certain that the end was drawing ever closer, perhaps more rapidly than I originally surmised it might. His struggle to allow his spirit to leave his body was truly like labor, and we were the midwives and cheerleaders along his triumphant road to freedom.

Just as it happens around the world at every hour under the sun, people came and went from my parents’ home over these last days, and we all played our parts in the unfolding drama according to our individual roles and skills. My step-father’s lovely daughters, sons-in-law, granddaughter, and great-grandchildren all added to the quality of the times shared under this roof, and his final days were filled with loving visits and calming energy. One visitor, a Stephen Minister by vocation, remarked that Spirit was “just pouring through the house”, and he praised our little home hospice with words of benediction.

Losing myself in the minutiae of my step-dad’s hourly care, I realized that my grieving process was being (somewhat necessarily) truncated by my self-imposed duties of conductor, coordinator, choreographer, and caregiver. Even as others found moments to cry, my reservoir was seemingly dry. But when the moment came and he took his final breath, we all huddled around the bed, and the tears and sobs came in torrents, releasing days of unexpressed stress and grief. It is said that “unshed tears will make other organs weep”. I wrung some organs dry today, so to speak, and now I can sleep the rest of the exhausted along with the rest of our family.

His death was a fine one, navigated with grace, dignity, and a collective benevolence of spirit. Now we can be certain that our dear loved one is winging his way to a place of deserved beauty and peace, and our efforts here on Earth sent him with enormous love to fuel his journey.

I just posted this on Latter Day Sparks and decided to also post it here. Thanks for stopping by.

Today, September 2nd, 2007, at approximately 1pm, Sparkey will be dead one year. His body still rests in the earth just beside our house, but his spirit body moves in an entirely different dimension.

Even as we celebrate his life and honor the 12-month anniversary of his passing, we sit vigil here in New Jersey, comforting my beloved step-father as he moves into the final stages of the dying process himself. The details of Sparkey’s passage are fresh in my mind, and at this time (10am) on September 2nd of last year, we were enjoying what we knew would be our final morning and afternoon on earth with our wonderful canine companion. It was a day of final events: the last walk, the last meal, the final treats from the mail carrier, loving visits from the neighbors, Sparkey bestowing a final kiss to a small child’s face (our neighbors’ newborn). And then, before we could catch our breath, the vet came, we administered the medications, and he died, crying a final tear from his left eye as we kissed him and told him how loved and lovely he truly was.

Now, on this very day, we watch as my step-father’s breathing becomes erratic, with 5-second periods of apnea (the absence of breathing), followed by a succession of rapid breaths once again. Hints of a minimal rattle in the throat make themselves known from time to time, yet he then breathes normally again. There will be no doctor visiting today to administer a dose of medicine to end his struggle, to assuage his suffering. In our culture, our dogs’ and cats’ suffering is painlessly ended when it is seen to be the most humane act we can perform; yet our suffering human loved ones, whose quality of life has long since diminished to less than a shadow of its former self, must struggle and gasp until the end. Morphine assists the process and depresses respiration, but Tulane will not experience the sudden and painless release that Sparkey was so blessed to receive.

Speaking of Sparkey and Tulane, Sparkey has now visited Tulane twice over the last few months, the most recent visit being only several days ago. When my mother and my wife and I were finishing a conversation around Tulane’s bed early last week, Tulane said, “I didn’t want to interrupt your conversation, but Sparkey was just here. He came through the window and stood by my bed, looking at me, smiling and panting, and wagging his tail furiously.” (We all noted that there was a chocolate-chip cookie on the bedside table and Sparkey may have been eying it from across the veil.) Tulane seemed very pleased by this visit, as he did by a similar visit several months ago when Sparkey entered through the closed front door and curled around Tulane’s legs under the kitchen table. With each visit, Tulane describes being able to smell Sparkey in the air, and to smell him on his hand after petting his head, long after our favorite golden dog had left the scene.

So, we await Tulane’s death, midwifing him through the process, even as we recognize and celebrate Sparkey’s anniversary. It is a significant day in our lives, and its importance informs our every waking (and sleeping) moment.

Happy un-Birthday Sparkey! May you run and play and rest in a peaceful and wonderful world, and may you welcome Tulane when he is ready to join you there. We love you, Sparkey!

A week lapse in blogging due to extenuating circumstances, caring for a dying parent. Stranded in suburban purgatory without internet connection or any of my usual anchors.

Death comes slowly and inexorably. We all die in increments. From the day we are born we are moment by moment closer to the time of our death.

And what does this proximity to death mean? What does it portend?

I feel that it portends our deeply held need to live even more fully and to forgive those who have trespassed against us, for those days of wine and roses are altogether too fleeting.

When Death begins to circle its wagons
drawing ever tighter spaces
around our dying loved one
we circle our wagons as well
drawing on previously untapped emotional and physical reserves
in order to do what we felt was beyond our ken.

Never did we think
that we could do what we are now doing.
Never could we picture the compromises, the sacrifices,
the emotional stretching that we would need to endure.
Never did we consider how Death—so patient—-
would slowly and inexorably remove our loved one
from our midst,
allowing us an intimate view
of how Death begins to take our loved one
even while he is still breathing before our very eyes.

Wait, watch
Listen and breathe.
Death may be cruel, Death may be kind
but Death is eventually our final friend in life;
removing our physical presence from this mortal coil
when our personal Sun has set.

Even as Death causes our loved one to wither
and unequivocally disappear
before our very eyes,
God(dess) is there,
holding the hands of all, the dying and the bereaved alike,
guiding us to a place
where Grace, Wisdom, and Beauty make their home.

We watch the wagons circle, helpless, yet
poised for the future,
but still clinging to a present
that must eventually give way
to a new world for our loved one,
a world to which they must travel alone.
Alone, yes, they must take their leave of us alone,
to release themselves from a body ready to return to Source.

We cannot accompany our loved one on that final road,
yet they are released by us with blessings
and hopes
for a sweet, sweet hereafter.

A string of whirlwind weekends—and the impending death of my step-father—have been generally impeding my ability to blog as consistently as I would like. Regular readers will also notice that death, dying and the grieving process have also made themselves quite visible in recent writings. When faced with the mortality of a loved one, one’s own mortality also indeed comes to the fore.

Gyalse Rinpoche has said: “Planning for the future is like going fishing in a dry gulch; nothing ever works out as you wanted, so give up all your schemes and ambitions. If you have got to think about something—make it the uncertainty of the hour of your death.”

The above is interesting advice at such a transitional time in life, when the stability, well-being and future of family structure is in question. How can one plan when the future is so uncertain? One can only ask for guidance and peace of mind to weather the storms of the unfolding days.

Today is my 43rd birthday, and I am working from home, spending some quiet time with Tina the Dog and a hammock. Calls and emails come in from time to time. Lawnmowers and other daytime neighborhood comings and goings fill the air.

Even as life continues on its usual trajectory, death lurks in the shadows. We really do spend a great deal of our time ignoring death, avoiding death, trying to beat Death at his own game. Movies portray death in many guises: as the demise of a self-destructive addict, the heroic death of a firefighter, the needless accidental death of a child, the tragic death of hundreds due to natural disasters, wars, famine, and genocide. The media bring us news of death daily as famous celebrities die, dozens of people are slaughtered by car bombs in Baghdad, or bridges and mines collapse in our cities and towns. Eventually, news of death becomes so routine, so ubiquitous, we are almost immune to its import, its very impact diminished through repetition, our eyes glazed over in disbelief.

As a medical provider, my desire, of course, is to assist my patients in postponing death, improving their health and quality of life, as well as trying to ensure that chronic diseases are treated, prevented, or stabilized. Colonoscopies, mammograms, testicular exams, blood tests—these are all means to the end of thwarting illness and death. But even these scientific machinations cannot save us all, and cancer grows in parts not scoped, or disease manifests when some aberrant gene decides to turn itself on. We are all works in progress, and as the saying goes, nothing is more certain in life than death and taxes.

When terminal illness strikes a family member, the other members of that family are forced into an intimate conversation with mortality. Through the processes of denial and ignorance, we can potentially shield ourselves from some aspect of this reality, but when push comes to shove, Death will force himself through the door one way or another.

In Ingmar Bergman’s film The Seventh Seal, the protagonist—a knight journeying through a a Europe gripped by the Black Plague—challenges Death to a game of chess, buying time while still knowing what the eventual endgame will be. This is a lesson for us all—we can buy time, we can stall, we can challenge Death at every turn, but even on a day which celebrates our birth, death must also be a part of the inner conversation.

I often want to ask a dying person what it feels like to know that one’s life is so very close to its end. Is there a breathless panic that not enough has been done? Are there regrets of relationships still unhealed? Is there a kind of relief that one feels? Is there lamenting of places not visited, photos not taken, pictures not painted, songs not written? And what of acceptance and peace? How does one face one’s imminent death knowing full well that there was so much more to be done, so much more living to enjoy? How does one reconcile that in one’s mind and heart?

Obviously to me, one of the most effective ways to beat Death at his own game is to embrace life in all of its challenges and curve-balls, throwing oneself into each day with abandon and determination. Unfortunately, we all occasionally lose sight of our mortality, putting off until tomorrow what we could do today, knowing full well somewhere in the back of our minds that tomorrow may never come. As for cleaning the bathroom or mowing the lawn, I see no problem with putting that off ’til the ‘morrow. But telling someone how much you love them, looking into the eyes of a child, smelling a rose in full bloom, or writing that long-dreamed of novel—these are the things that simply cannot wait. A dirty bathroom is one thing. An unhealed relationship is quite another.

So, as a birthday present to myself, I take this moment to reflect on life and death, and make a pact to continue to remind myself of the importance of each day and my ability to embrace it for all it’s worth. Doing any less is only inviting Death to eventually rob me of something I treasure through the mechanisms of regret and remorse. We should all strive to deny Death that opportunity, and allow Life its share of victory and everyday bliss.