FINIS

The Big Sick (2017 Showalter)

“The trouble is, you think you have time.”
Jack Kornfield, Buddha’s Little Instruction Book

15 years ago, my Aunt died of breast cancer, she was 45.  The family rallied around during her final days at home and when she passed we all dispersed like the seeds of a flower on the wind.  Her sister, my Aunt Gail, decided it was time to see the country.  She and my uncle had raised their kids and completed the traditional, responsible portion of their time on the planet.  Watching my Aunt die, changed their perception of time.  Their home went on the market and an RV arrived in its place.  For one year, they traveled the country making a new home each day in another location.

The loss of my Aunt, so young and alive, changed my life forever.  I was 30 at the time and a voice in my head repeated, if I only have 15 years left, what would I do?  The answer was clear, see the world, Cambodia, Australia, New Zealand, North Africa, Scotland, Hungary, Japan, and anywhere the mind could imagine.  The death of one caused a ripple effect in the lives of many.

The Big Sick is a beautiful film about realizing the value of life in the nick of time.  The comedic timing of Kumail Nanjiani invites us in to view his budding romance with Emily (Zoe Kazan).  The actor is playing a film version of himself based on real events that happened to his wife Emily V. Gordon.  The punchlines are timely with Uber jokes and jabs at modern American racism.  The humor delicately lifting up a mirror to allow us to laugh at our own prejudices.  It is a love story between a boy and a girl, between parents and children, between coworkers.  On my walk home from the theater, I felt warm inside reflecting on the film.  This small production with its rich character development reminds us to release ourselves from the cage of rituals and beliefs we attribute so much value to.

It is hard to imagine a movie where one of the main characters disappears into a coma for half of the movie.  However, the performances of the supporting cast are so strong that we almost forget Emily has gone away.  Holly Hunter and Ray Romano are genuine and hilarious as the new breed of aging parents.  Although they object to Kumail’s recent treatment of their daughter, they end up defending and befriending him.  He is welcome into their family just as his own parents are disowning him for choosing to date a “white” girl and failing to agree to an arranged Pakistani marriage.

The Big Sick is not a slick big budget film. It does not push the boundaries of shooting or editing.  What it succeeds at is simply presenting an uplifting, romantic comedy when it could easily have been dark.  We feel for everyone in the film, parents and children equally and leave with a clear message: live life now, to its fullest, and be honest and true to yourself and others.

Death and Denomination

Every culture experiences death.  What happens after is open for interpretation.

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Just as we once threw rocks at the moon, our thoughts on the afterlife reflect our fear of being rendered non-existent. According to Emile Durkheim in the “Elementary Forms of the Religious Life”, because the human mind can dream and make mental pictures of the dead, early humans determined that this meant the person had not died but instead was transformed into another form.   The belief in life after death is universal in all human cultures.

Let’s take a look at 5 religions and their individual interpretation of the afterlife.

  • Scientology

A Scientologist believes that humans are thetans or immortal spiritual beings.  Thetans have several lives and when they exit one life they simply transition to a new life.  In a sense, there is no death, just transition.  The body is simply a vessel for the soul.

  • Buddhism

A Buddhist believes in the cycle of rebirth based on karma.  This cycle of birth, death, rebirth continues until the individual reaches Nirvana. Nirvana is not to be confused with heaven, it is simply an enlightenment.  Freeing yourself from the things that bind you such as; jealousy, hate, desire or ignorance.  This perfect peace is reached only when the individual travels the Eightfold path: Right Understanding, Right Intent, Right Speech, Right Action, Right Livelihood, Right Effort, Right Mindfulness, and Right Concentration. This isn’t so much a linear path as a manner of living.  When life is lived right it is balanced and ethical.  Think of the 10 Commandments without the ruler to the knuckles.

  • Christianity

A Christian believes in the concept of sin.  Humans are separated from God by sin.  Jesus died so that sin could be forgiven and humans can be reunited with God.  Christians believe the soul is an immortal entity that lives within our body.  If you live a life without sin and believe in Christ you will find eternal life in heaven after the physical death of your body.  God also granted man free will and if he chooses to reject God, then he is banished to hell for an eternity of pain and suffering.

  • Maori

A Maori believes the spirit leaves the body and passes to the spirit world at death. The family of the deceased meet at the traditional meeting place for the living called the marae.  There they summon the spirits of the departed to come and help transition the new spirit to the spirit world.  The Maori also believe that the spirits and ghosts of their ancestors return to watch over the living.

  • Islam

A Muslim believes that death is the separation of the body from the soul.  The soul then transitions to the afterlife.  God has created this world as a test and there is only one opportunity to live a just life.  Death is not to be feared and is merely a transition from the material world to the unseen world.  Similar to Christianity God has granted life and upon death he will resurrect and judge the righteousness of the individual and determine their eternal life of paradise or hell.

Cultures from all corners of the world strive to provide dignity, pageantry, and ultimately, meaning to an inevitable often ugly part of life, death.  We make art, music and create beautiful stories all with the intent to make sense of what could possibly be simply the end.  At least we all can rest at night knowing eventually the truth will reveal itself to us all.

Sake with an i

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“Saki was my baby boy.”  Tina smiles and lets out a little chuckle. “He was like pig pen, he shed 24/7.”

Saki was a handsome brown eyed Shiba Inu.  This small, agile hunting dog originated in Japan.  Even though the life span is typically 13-15 years old, Saki was going strong at age 16 1/2.  A month ago, my very good friend Christina said goodbye to Saki, her daughter Jessica and Jason by her side.   Opening up emotionally is not Tina’s secret skill but she generously agreed to be my first interview on the subject of loss.

DDM: Is that Sake with an e?

TINA: No, with an i.

DDM: Why an i?

TINA: Because I had a ten year old girl who wanted to make a heart over the i.

DDM: How would you describe Saki?

TINA: Saki was a person.  He was a member of the family.  (Tina takes a deep breath).  Saki has a piece of my heart.  Jessica (her daughter) always says, “he’s your favorite child.”

DDM: Is the love of a pet different than love of a person?

TINA: Look, Jessica loves me no matter what, she has to.  We get angry and we fight.  A dog doesn’t get angry, they love you no matter what.

At this moment the phone rings, Tina’s mother is on the other end proclaiming her research findings on the purchase of a new TV.  Tina does not have an opportunity to inject a syllable.   The conversation lasts a few minutes, Tina hangs up the phone and sighs.

TINA: Saki never bothered me like that!  Again a pronounced smile glides across her face and she let’s out a chuckle.  He would let me sleep and just sit by the edge of the bed and stare at me breathing in my breathe until I woke up.  (tears begin to well in her eyes)

DDM: Describe people’s sensitivity to your loss.

TINA: I don’t think people get it.  For me, I don’t like to talk about it.  I went to see a friend and even after telling her about it, moments later she wanted me to direct my attention to puppies on the TV.  “Look at the puppies” she insisted and I just kept saying no.   My cousin also had a similar reaction.  She is attached to her dog and soon after my loss she still had a hard time understanding why I didn’t want to pet Clancy.  That aggravates me.

DDM: Do you think he can be replaced?

TINA: (without hesitation) NO.

DDM: How to you find each other?

TINA: We had seen a million Shibas, but it was him.  He immediately picked out Jessica.  Jess and her father would go to see puppies, it was their thing.  Well, the went to one shop and there were Shibas on the floor with a baby gate blocking them.  Saki kept jumping out and finding Jessica.  They would put him back and he would just get out again and find her.  That night, she kept talking about the dog, “but Daddy, please”.   So the next day we all went and sure enough he picked Jess again.  When you picked him up he put one paw on either shoulder and snuggled close to your neck. I know he picked Jessica but he really picked all of us. When he was little he would hug you.

DDM: What is your favorite memory of Saki?

TINA: Just sitting out back with him or playing ball or walking.  We had a crickety convertible and he would love to drive with the top down, standing on the back seat with his head out the back…He was 16 1/2, we were lucky.  He would jump in bed and cuddle.

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DDM: Describe the relationship between Saki and your daughter.

TINA: When I think of memories of Jess, Saki is always there.  For her, every memory is tied to him.  Jess and Saki were like siblings, at night when I would say it is time for bed, they would both run to the bed to fight over the better position.  Saki usually ended up squashed against the wall.  Her face lights up and she giggles.  He was like her little brother.    When I was 15 or 16, I went to a psychic and she told me you’re gonna have a girl and a boy.  Saki was my boy.

DDM: Are there objects/things that belonged to Saki and is it difficult or soothing to look at them?

TINA: His favorite toy was a pink stuffed puppy.  When I see it, it makes me very sad.  Jessica has his harness.  At this point the words are halted in her throat.  She chokes. She has his leash.  For me, his bed was too much, I couldn’t look at it but his blanket is there folded.  It makes me feel better.  Like my grandmother’s necklace (she touches her hand to the gold chain around her neck), it reminds me of them, makes me feel like I have a piece of them.

DDM: Use a sentence or metaphor to describe Saki to a stranger?

TINA: Cotton Candy and Ice Cream! It was like having a second child only, never angry, never disappointed, easy to love.

DDM: Thank you Tina!

 

Cry

200Years ago, while traveling, I lost my return plane ticket (yes, long ago plane tickets were made of paper). I was broke and the thought of buying another ticket sent me into a stress induced tear-fest.  A friend I was traveling told me, “I never cry over anything that can’t cry over me”.  I don’t know where the words came from originally, it really doesn’t matter. My friend went on to explain how she had lost her father, husband, and sister all in the same year.  Her father to old age, her husband to a work place accident and her sister to a drunk driver.  And so she said, “never again will I cry over anything that can’t cry for me”.  This phrase stuck with me and changed my life in profound ways.

When a loss happens, it seems that everyone puts their hand in a jar and pulls out a prepackaged phrase, this too shall pass, time heals all wounds, they’re in a better place.  Ugh. Enough. For me, this phrase about crying was the only one that made sense.  Ah, yes, now I get it.  Everything else is without weight.  Nothing is as important as our life and the lives of our friends and family.  Having experienced loss, I now have membership into the club of understanding. Words often fall on deaf ears until experience renders them relevant.

Today, I don’t cry over objects, deadlines, missed opportunities.  My husband can knock a 200 year old vase off the table and into oblivion without my uttering a word.   However, when I’m faced with the loss of someone, I cry and cry and cry. This is important. Get it out. Scream. Yell. Fly your freak flag but get rid of all that toxic sorrow. Science has proven that crying will help you live longer.  It’s the body’s way of relieving stress.

Researchers divide tears into three types:

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Still from the Keep America Beautiful campaign in the 1970s
  • Basal tears – are always present and lubricate the eye
  • Reflex tears – appear in reaction to irritants like dust or smoke.  These are also the tears that launch from our ducts when chopping an onion.
  • Emotional tears – are produced when the body needs a release from a strong emotion such as happiness or sadness.

According to Jay Efran, emeritus professor of psychology at Temple University, modern science indicates that while animals produce the first two types of tears, only humans produce emotional tears.

Biochemist, Dr. William Frey from the Ramsey Medical Center, conducted research on tears. He found that the chemical compounds that make up tears changes depending on the type of tear. Reflex tears are 98% water, while emotional tears also contain stress hormones.  During times of stress, an emotional cry remove toxins from the body.  Endorphins are also produced giving us a feeling of relief.

So while we shouldn’t pull out the Kleenex for overcooked pasta or a dent in our car, when facing a grave loss, by all means, open up the water works.

Cry and you will feel better, science says so.

 

Mom’s Tomato Sauce and Meatballs

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This blog was born out of a Thursday night ritual between cousins.  The weekly meeting included a meal, a movie and a conversation about death.  One of those meals was my Aunt’s spaghetti and meat balls draped in a rich tomato sauce made with love by my cousin Shannon.   Although she makes it from memory, I’ll try and do it justice in print.

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Ingredients

Shannon: “It’s not exact because a lot of it is to taste”.

1 lb chopped beef
1 egg
Italian style bread crumbs
olive oil
1 sweet onion – chopped
3 garlic cloves – chopped
1/4 cup sugar
salt
pepper
oregano
basil
parsley
1 bay leaf
water
2 (28 oz) cans Contadina tomato puree
1 (6 oz) can Contadina tomato paste

Preparation

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To make meatballs combine beef, egg, 1 clove garlic and 1/3 of the onion. Mix in a dash of salt and pepper, and a few teaspoons or more (depending on your preference) of oregano, basil, and parsley. Slowly mix in the breadcrumbs until everything sticks together and not to the mixing bowl.

 

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Roll with hands to form meatballs and set aside.

 

 

 

In a large pot, simmer olive oil. Saute remaining onions until almost clear, then add garlic – stirring both so they do not burn but the garlic starts turning golden. Add 2 cans of puree. Fill one of the empty puree cans with water and slowly mix in. Mix in paste. Add 1 bay leaf. Mix in a dash of salt and pepper, and a few teaspoons or more (depending on your preference) of oregano, and basil. Add 1/4 cup of sugar.

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Reduce heat to low and add all of the meatballs.   Cover with a lid and simmer for  5-6 hours stirring regularly.  (Most people won’t have the patience for this, but trust me, the meatballs cook slowly and the flavors blend nicely when left for hours).  Taste often and add additional salt, pepper, oregano, basil and sugar as needed.

 

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At this point in the recipe Shannon recommends a time out.  This can take the form of opening a bottle of wine.  We enjoyed The Seven Deadly Zins and binge-watched Game of Thrones. 

http://www.michaeldavidwinery.com

 

Aunt Judy’s tomato sauce and meatballs, delicious!  Family, food and film, what could be better?  Thank you Shannon!!

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Objects Our Self Imposed Purgatory

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We recently moved into a new home and before the move my husband was eager to minimize the box count, in hopes of a stress free event.   On packing day I was summoned to the basement to justify the relocation of several boxes (I’m a bit of a hoarder).  The site of the contents immediately caused me anguish.  Box number one was maternity clothes, tags on, quietly awaiting the growth of my belly.  Box number two, the toughest to bare, was full of colorful objects collected on my travels saved for my future child.

When I was in my 20s and 30s I traveled to exotic places, always looking toward my future life.  People do it all the time, buying trinkets for their loved ones to show they were in their thoughts across the miles.  I wanted my child to know I was thinking of him before he even existed.  These objects would allow me to teach him about other cultures and inspire him to see the world.   There’s a hot pink hat made by the hill tribes in Myanmar (Burma) and hand made wool booties from Australia.

The bigger box containing the maternity clothes and books is clearly connected to the loss of my baby.  At first, I could not imagine parting with a single piece, however, time has rendered this collection unnecessary.  Now it is the right moment to find the articles an owner who can put them to good use.  Maybe one of my nieces will eventually get pregnant and I can part with them peacefully.  It isn’t an option to drop them in one of those donation boxes behind a store, they hold too much value and cannot be equated with old clothes that I’ve outgrown or aren’t in style anymore.  So, yes, it is time to let go of this box.   Phew, that was ten years in the making!

Box number 2 is not so easy to part with.  These articles are not connected to a person specifically.  They are a part of me, as if my hopes and future were delicately stitched into each seam.   Every article was selected and transported long distances to be given to the life I was bound to create.   Occasionally, the box would be opened and the objects inspected.  This unfailingly placed a smile on my face.   Since the loss of our child, the box has not been touched.   There is no one to give the objects to.  They were brought into existence for the one person who was always intended to have them.  He isn’t coming and these will certainly be the last objects that are pulled from my crinkly old hands as I gasp my last breath. So be it. I cannot part with this box. If it goes, so goes hope.

My husband is a minimalist.  He is not sentimental. Please don’t misunderstand me, he suffered a loss too, but he did not collect these objects. His inability to process my absurdity is not going to force my hand.  He cannot comprehend the pain.  He would certainly take the box and immediately toss it in the sea if permitted.  He tells me, if you never see it again, it can’t cause you pain.  He’s a smart man.  He’s probably right, but for me there is no other way.

The box remains perched on top of my dresser.

Death without a body

I good friend recently told me that she was experiencing the death of a former life.  She was parting with all of her professional work clothes. It had been years since they were used but she couldn’t seem to part with the outdated garments. There is no logical reason to keep them, and yet, they signify the existence of a past life. It happened and now it is gone.  It is a part of her life that has ended.

Freud believed this connection to objects stems from our ego and narcissism. We begin life with self love and slowly transfer that love to people and objects. When we lose that transferred love, through a loss of some kind,  we need to get it back to make ourselves whole. This may be why we surround ourselves with objects. Most often the object of our love is a person but when we lose that person we transfer the obsession to material objects related to that person.  It’s sad that we all have holes to fill.  Whether it is a person, the end of a relationship, or the loss of a job, we all want to feel whole. Perhaps objects help us along our path and bring us back to ourselves or to other people we can love.  The trick is to use objects just long enough, before obsession or fixation take hold.  But how do you know when it has been long enough?

 

 

Pisto Manchego

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Comfort Food – Spanish Style (Servings: 4)

Pisto is also known as Pisto Manchego due to its origins in the La Mancha area of Spain. Although thought to be connected with Cervantes, it is actually derived from a meal served at the royal wedding of the Sultan Harum-al-Rasid to the princess Al-Buram. Harum is the son of the Sultan known to many from the “Arabian Nights”.

My Spanish mother-in-law describes pisto as “una mezcla” a mixture of ingredients. The shepherds in La Mancha made meals from available vegetables.  Every abuela (grandmother) in Spain has their own unique recipe.  This may explain why every recipe for pisto is different.  Versions feature; eggplant, peppers, onion, zucchini, and tomatoes. The specific ingredients are up to you. Typically eggs are fried on top. Some versions even add chicken, although for me, that takes the meal too far from its roots.

Don’t over think it. Remember the shepherds in Spain made this while tending their flocks in the field.

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Ingredients

4    tablespoons extra virgin olive oil

1    medium sized onion diced

3    garlic cloves

1    green pepper diced

1     red pepper diced

1     zucchini diced

2     pounds tomatoes peeled

Salt and Pepper to taste

optional: 4 eggs

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Preparation

In a large pan heat the olive oil over moderate heat. Add the onion and garlic and cook until the onion is translucent about 5 minutes. Add the peppers and zucchini and cook for another 3 minutes, stirring often.

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Reduce the heat to low. Add the tomatoes and simmer gently until the juices have evaporated, about 30 minutes. Season with salt and pepper.  If desired, eggs can be added at this point.  Allow the whites to cook through.

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The eggs can be fried separately if preferable.  I like to cook them right in the pan on top of the vegetables.  They cook up very quickly and it saves you from having to clean another pan!

This is pure comfort food and can be eaten at any time of day. Hot or cold, it doesn’t matter. Eat it as a leftover, even better. This gives the flavors time to fuse together.  It is a great meal for vegetarians and, if you lose the egg, vegans too.

Thoughts

  • Boiling the tomatoes while the other ingredients are cooking loosens the skin for easy peeling.
  • Peeling the zucchini makes the meal more appealing to children
  • Total time – 1 hour

 

 

 

 

Don’t leave me this way, a death video

Birds of a feather flock together

The 1980s were replete with remixed versions of popular songs.  Take, for example, the Communards.  I know what you’re thinking. Who?  Hailing from Britain, the Communards made a brilliant remix of the famous Thelma Houston disco hit “Don’t leave me this way”, which was a remake of a song written by Kenneth Gamble, Leon Huff and Cary Gilbert.   But I digress.

One day while listening to the extended remix over drinks with my best friend and my boyfriend, I decided to don a blue dress adorned with fake flowers sewn to the edges and a blue feathered, helmet style, wig.  Fit out in feathers and flowers, I embarked on a lip sync performance to upstage all others.  I belted out the remix in its entirety, cabaret style.  portapack My friend grabbed our camcorder and began to videotape the performance. Remember, this was decades before social media, mobile phones, and selfies.  This video is pure gold.  Twenty minutes of a dancing blue nymph, while in the background my boyfriend performs various acts of suicide (it is a very long song!).   At age 24,  I decided this would become my death video.

Now, deciding to have a death video at twenty four may seem premature, but you haven’t seen this video.  Everyone at my wake will be in stitches.

This is my wish, I don’t want people to cry over me.

The preservation of my death video is in the hands of a dear friend.  Think about it, you need someone to protect such a valuable piece of history.  They need to maintain the right format because formats change over time.  They need to have a way to play the video at a wake years from now.  Whom you choose is very important.  You must find someone responsible enough to carry out your last wish.

Recently,  while watching “Man on the Moon”, (1999, Milos Forman),  I realized I was not alone in this concept. Jim Carey appears as Andy Kaufman lying peacefully in a casket.  Behind him, an animated Andy appears on a projection screen and encourages the attendees of the wake to join him in song.  He exclaims, “follow the bouncing ball” as if they are crooning at a karaoke club.  The sadness in the room immediately changes to laughter.

The message?  Celebrate life, not death.

Barrow’s Dream: Voices of the Deceased

Say goodbye to your neighborhood scéance and say hello to the VEGM.  The Video-Enhanced Grave Marker is the latest offering in voices from beyond the grave.  This is the death video taken to new heights.  Imagine, you walk through the cemetery, remote in hand, and as you approach the tombstone of your treasured someone they begin to speak to you.

Soothing? Creepy?  I’m not sure.

I’ve always found places of rest as peaceful parcels tucked into the landscape.  A place to sleep in quiet for all eternity.  With the VEGM, I picture a cacophony of voices yapping in unison from the other side.

No thanks.  But who am I to argue with progress.

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Patent US 7089495 B2 – Robert M. Barrows https://www.google.com/patents/US7089495

Google Search…Death Video

A Google search for death video turns up a glut of horrifying videos showing the darker side of humanity. Suicides on video, ISIS beheadings and shots of dead bodies are at the top of the list.  It makes me sad that the world has lost a sense of humor.  As this may not be your intended search, try typing funeral video instead and you are right back on track.  These video companies create a narrative from the photos and videos you provide, painting a beautiful portrait of your loved one’s existence. Here are some resources:

Better yet, with today’s technology, capture and collect some of life’s richer moments on your own.  You know yourself better than anyone else.  Tell your story, entrust a friend to guard it for a few decades, and violà!  You now have your own, homemade death video!

 

 

 

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.