The life of Charlie Gard

If you asked me 10 years ago my thoughts about the Charlie Gard case, I would have empathized with the parents.  Today, while still empathizing with them, I believe they were blinded by love and therefore unable to find the most compassionate resolution for their child.

Charlie Gard’s life ended on Friday in London, one week shy of his first birthday.  He has 150,000 Facebook followers and his name has been featured in internet and mainstream media outlets for sometime now. His GoFundMe page had raised 1.3 million pounds earmarked for experimental treatment.

Charlie was born with mitochondrial DNA depletion syndrome (MDDS). According to the BBC, this rare genetic condition causes muscle failure and progressive brain damage.  There is no treatment at this time and the prognosis in infants is negative, resulting in death.    In November 2016, Charlie began having difficulty breathing and was taken to Great Ormond Street Hospital were he was placed on mechanical ventilation.  Initially, parents Chris Gard and Connie Yates were in agreement with the hospital to attempt experimental treatment for the baby. Unfortunately in January 2017 Charlie suffered several seizures which caused severe brain damage and resulted in the hospital withdrawing its recommendation.   The result was a battle of beliefs on social media and in traditional media.

Ross Douthat of the New York Times gave a scathing and demonistic depiction of the British medical professionals and their inability to let parents decide the fate of their own child.   I wonder if Ross has ever lost a child.   I wonder if Ross has every spent nights as a nurse watching as a baby suffers from a life threatening disease.  Still, it is refreshing that we live in a society that allows these moral questions to be examined.

My position on the issue is simple, if your son is suffering it is time to let go.  I come to this conclusion from experience.  Ten years ago, I was 23 weeks pregnant, living in a European country when I was diagnosed with severe Oligohydramnios.   This simply means our baby had no amniotic fluid.   My husband and I were asked to make a life or death decision for our son.  No one should have to make such a decision. It is heart wrenching.  But to demonize the medical professionals is a mistake.  I can assure you every doctor, nurse, and receptionist we came in contact with was as distraught over the news as we were.   The best anyone can do is find out everything you can and then make a decision for the health and safety of the child.   For us, learning that our child would suffer, be unable to breath, and most likely live a week or two writhing in pain was too much to bare.   We had to put aside all of our beliefs, our hopes and dreams, and focus on one issue, doing what was best for our child.  I reiterate, I hope no one ever has to make such a choice.  It must be even more difficult when you have a healthy child for a few months and then he becomes ill.  The desire to fix him has to be unbearable.  This is why you have doctors, experts who can look at the situation and devise the best path forward for the baby.

Charlie’s parents loved him very much. They were willing to go to the ends of the earth to make him whole. Can they be faulted for that? No.

Due to his irreparable brain damage caused by the seizures, doctors on both sides of the Atlantic recommended taking him off life support and allowing him to pass with dignity.   A specialist from Columbia believed he may have had a treatment but once he examined Charlie, he too, felt it was to late. Should the doctors be faulted for wanting to end the baby’s suffering? No.

These are not easy decisions for anyone involved and I’m certain they didn’t come to conclusions lightly.  What I find troubling is the opinions generated loudly on social media and by journalists.   I’m troubled also by the money generated by the GoFundMe site.  Could that 1.3 million pounds have been better spent on research to help the next baby? Did the people donating money understand the facts?  Is the death of this child something that should go viral?

My memory of laying in my hospital bed with my husband beside me forces me to shout no!  Leave this little precious gift alone.  No more court battles.  No more invasive treatments.  No more pain for little Charlie Gard.

Now, let’s give his parents the space and privacy to move on with their lives.

A Visit to a Death Cafe

This month I decided to visit a death cafe. I had no idea what to expect. The Death Cafe website listed a Monmouth county event taking place at the Quaker Meeting house near my home. My curiosity was piqued. I had to attend.

The event was slated for 7pm. As I drove toward the location I began to talk myself out of going. “I don’t need to sit for two hours and talk to people about death and loss.”  This was the voice in my head reminding me that I know more than anyone else and how could I possibly learn from someone’s experiences. I turned into the drive and turned off my internal pessimist.

Let’s be honest, I would be lying if I didn’t admit that I really wanted to see inside the Quaker Meeting House. It’s not the original from 1672 but it does date back to 1816. The structure is bare bones with creaky floor boards and open rafters above your head. There is a separate entrance for each sex and a wall dividing the interior space designed to continue the segregation theme, although such practices have long since passed. It is safe to say, this is a fine backdrop for our discussion.

Once inside, I found a table full of cakes to my right and a table full of people to my left.   Women outnumbered men, which I expected and all of the men seemed to be in attendance for capitalist reasons as opposed to cessation. As we went around the room introducing ourselves and our raison d’être, I realized, I may have misunderstood the purpose of the Death Cafe. I imagined a place where we would talk about the healing process of living after experiencing loss, I was mistaken. Most of the participants were going through hospice with a loved one. I thought to myself, I can grab a tasty cake and run for it, or I can learn something from these lovely individuals, so I stayed. My secret skill is not listening and this proved to be a good opportunity to simply listen.

After the first hour I began to see a pattern, everyone was touching on the same theme, lack of support both emotional and physical.  The children lived too far away.  Volunteer’s and caregivers often left when they were still emotionally needed.  The resounding problem; lack of community, family, and social structure.  It occurred to me that this small death cafe was the community that was missing in the lives of these individuals. As a society we have become busy, self absorbed and complicated. We don’t know our neighbors. We don’t live near our families and the result is a lot of lonely people.

The event was administrated by a very capable Palliative nurse. She spent some time discussing her end of life doula training program. A birth doula helps a new mother welcome her baby into her life.  Conversely, a death doula helps a person leave this world. It comes down to not doing but being with the person. In other words, getting to know the person behind the illness.   It is a beautiful concept. If you would like to know more you can visit http://www.gentlydying.com which lists training classes and certification opportunities.

This Cafe of Death did not exactly fit my needs, however, it did teach me some new information about dying which may become useful down the road.  More importantly, it opened my eyes to a flaw in our society, lack of community. Perhaps, with time, small groups meeting up in historic houses will lead to larger groups and we will continue to connect and put an end to the desolation and despair that too often accompanies the loss of a loved one.

Smoked by Salmon

This isn’t a review but more a momentary break from normalcy to travel into the absurd.

No laughter, no life. Monty Python’s The Meaning of Life (Terry Jones, Director) is more a series of sketches than a linear narrative. In true Python style, there is an blend of over the top humor mixed with social critique in an exploration of the human condition from birth to our demise

The seventh sketch in the series is Death.  Set in the bucolic countryside we find our pale rider approaching a candlelit cottage with silent determination. Death comes to dinner, for the folk, not the food. For me, one of the funniest moments is the knock on the door of the cottage. The Grim Reaper (who, by the way, is not of this world!) uses his scythe to bang on the door not once, but twice. The comedic timing is on spot. The dinner guests, otherwise engaged, must not have heard the first knock. The frustration the Reaper has while trying to alert the self absorbed guests to his identity is hilarious. Other highlights include: the Grim Reaper using his bony fingers to simulate the cupping of balls, Michael Palin famously ad libbing, “Hey, I didn’t even eat the mousse” as his soul trots off to heaven, and Death growing equally agitated with both the Americans and the English for their inability to just shut up.

This film was the last of the Monty Python efforts as a group and was released in 1983 just months before the death of Graham Chapman. This film has the distinction of not only winning the Grand Prix at Cannes, but also suffering a ban in Ireland. It is the third film from the prolific comedy troupe and although not as popular as  Life of Brian and Holy Grail, it has moments which are pure gems. Once the souls are struck down by the salmon supper, they drive their cars into heaven (why walk?) to enjoy a Tony Bennett look alike singer in a Las Vegas style hotel, stuck in a perpetual Christmas theme.  If that isn’t a reflection of the absurd meaning of life…what is?

 

 

Anxiety in Arlington

One spring weekend, we decided to take a trip to DC. It was cherry blossom time, not to mention an additional abundance of  tulips about town. Following up our first day of traversing the town, visiting monuments until the soles of our feet burned, we decided to take it easy and stroll through Arlington cemetery.

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Arlington cemetery in springtime doesn’t exactly evoke emotions of sadness. It’s a setting of serenity, calm, silence. Precisely the location deserving of people who have made great sacrifice for others. I’m sure if you conducted an exit poll, the majority of respondents would say the prevailing emotion felt whilst visiting the grounds would be pride not pain. I, on the other hand, felt pain. It came on suddenly, without warning and gutted me. I had not lost anyone to war. None of the names carved in stone spoke to me, and yet, I was struck down, emptied.

I had never seen the grave of JFK, nor the eternal flame. My husband and I approached the small hill where the slate rectangles rest atop the Kennedy clan. Like everyone else wandering up the walkway, there was the usual feelings of wonder (what could have been), curiosity, and maybe even that slight bit of hero worship. I’ve gravitated to graveyards all my life, Pére Lachaise, Zentralfriedhof, Green-Wood, fascinated at the collective genius resting beneath my feet.  These sacred places, removed from the daily pace of life, unfailingly quieted my soul.  This moment was different.

The first slate that caught my eye wasn’t the large stone bearing the name of the fallen President. It was another, much smaller stone.  The size of the marker immediately filling your heart with dread for what lies beneath.  Carved in the stone was a name, Patrick Bouvier Kennedy,  August 7, 1963 – August 9, 1963. He lived only two days. I stopped breathing for a moment. Everything around me moved in a slow motion blur. Where was my husband?  I fled. I ran as far from that hill as my legs would take me even as they were buckling under the lack of blood flow to my brain.  I know my body well enough, I was about to faint. I found a tree with limbs draping just enough to hide me. My body was cold, my hands clammy and then I threw up.

Under the of shade of that old tree, clarity washed over me. I realized what I hadn’t been able to come to terms with for four years. I gave birth to a child, but he had no name.  I never held him.  I know he was a boy because the doctor’s told me, not because I saw his form. I felt his heart beat inside me and his movements, but never held him.  There was no place to mark his time here. There was no place for me to go.  It was as if all of the pain that I felt was a fabrication of my own imagination. Jackie had two children the public never knew, but they were given names and a place to rest.   This is what was missing in the story of our loss.  A nameless boy with no mark on this world.   As if it was all a dream.  An intensely dreadful dream.

The Unbearable Lightness of Being (Kaufman, 1988)

“Sigh”,  this movie……….encapsulates souls at play, at battle, in life.  I’m lost inside a 1968 Czech city struggling to emerge from Soviet hegemony.  I’m lost in the life and death of the characters who spend close to 3 hours exploring the human condition and quest for freedom, love, and meaning in life.

The book by Milan Kundera, which the film is based on,  is written as a linear narrative edited between chapters which explore the philosophical concept of lightness.    The existentialists believe that weight is life-affirming.  To have weight to one’s life is to be content.  Nietzsche’s idea of Eternal Return grants a human life purpose and weight.  Eternal Return dictates that existence is a continuous circle, everything is fixed and reoccurring.  This permits us to buy into a notion that life is not fleeting but has a purpose.  This reduces the burden of living and the anxiety of living a meaningless life, for every life is needed to complete the infinite cycle.  Kundera chooses to explore Lightness through his story of Tomas, Tereza and Sabina.  In lightness there are no rules, no duty, no moral obligation.  However, in lightness, life is a one time occurrence, not to be repeated, finite.  There is no meaning to it.   It doesn’t matter if you’ve lived a good life or a miserable one because there is nothing more and that is what makes it unbearable. Kundera forces us to ask ourselves, would we choose lightness or weight?   These ideas are not new but have haunted thinkers always.  The Greeks and Buddhists pondered the idea long before Kundera.  Yet, Milan Kundera presents the ideas to us like a budding rose, bursting from a thorny drab stem.

The balance of weight and lightness are keenly felt when Tomas gazes upon Tereza for the first time.  The pool is peaceful, men are playing chess intent on their game and abiding by the laws and codes it encompasses.  Suddenly, there is a crash as a body breaks the calm surfaces and disrupts the pieces on the board.  We see Tomas transfer his glance to this wild creature in the pool.  When we cut to Tereza, she is gliding under the water with such grace and lightness, unaware of the rupture she has caused above the surface.  We cut back to the men fighting over where the chess piece belongs.  The lightness and freedom which Tereza has carried into the pool has caused a ripple in the purpose and meaning of the chess game.    For me, Tereza seems to embody both concepts, although many will say she is the character tied to weight where as, Tomas and Sabina are fighting for freedom and lightness.   Both Tereza and Tomas begin as polar opposites but move closer to each others’ weight/weightlessness as the film progresses.  Another scene which translates the book’s concept of weight (duty, morality, code of conduct) with lightness (freedom, lawless) is the wedding scene in which the farmer’s pig runs through the ceremony wearing a bow-tie.  The lightness of this moment breaks with the weight of the impending marriage and all that comes with it, responsibility, faithfulness, respect.  This contrast is illustrated with the preacher’s objections to the pig disturbing such a serious moment.

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Philip Kaufman brought to film a book that most thought could not translate to the medium.   He wrote the screenplay with Jean-Claude Carriére which surprised me.  Much like the Story of O which was written anonymously, the theory was it was written by a women because of feminine details found throughout the book.   The same is true for this screenplay.  The details in the film are soft and female.  The moment Sabina and Tereza meet, their gaze and exclusion of Tomas from their new secret union is written by someone with intimate knowledge of women’s thoughts, fears, manipulations and strengths.  The missing sock scene and its reappearance in plain view later is another purely feminine moment.   The quiet moments in this film, the pauses, are sometimes stronger than the lines.  The acting is outstanding.  The casting of Tereza (Juliette Binoche) with her alabaster skin and softly stained cheeks along with Sabina, (Lena Olin) her dark eyes, full lips and almost male independence, could not be improved upon.   When they are on screen together, Daniel Day-Lewis disappears into the background (if that is possible).

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I’m not troubled that Tereza, Tomas and Karenina leave us.  They’ll never age.  They are frozen, perfect. If you believe in the Eternal Return they will be back.  They have wandered through the dark forest lost, finally finding the light and true freedom.  I can’t imagine them anywhere else.  Sabina, left to live a long life of lightness, seems the tragic one in this film.

This will not be my only exploration of this film, there is too much to say.  After all,  I named a dog after Kundera!   I really love this film.