The C – Word

It might explode like a grenade thrown into a small room. I worried that everyone might be put right off by it. They might log out, log off, shut their laptops and go for a walk.

What do you mean ‘Celebrate’? What is there to celebrate? Nothing. NA – Not Applicable.

After a severance such as this. The death of my child? How can I? To me, it does not apply. I belong to another club now. Here, the air is laden with a sense of exclusion and non-deserving. Here, the rejection of invitations to celebrate is automatic.  

Memories of our kids. The foods they loved, toys, TV shows, films, books, nursery rhymes, practical jokes, school and Christmases. Our hugs. Sweet stories revealed through their friends after they died. Their hidden kindnesses. Laughter. Tears. A whole life worth remembering. Worth honouring. Celebrating.

What of us? Parents. Alive. Old labels stripped off and new strange ones slathered on. The ground beneath our feet taken away and replaced with quicksand. Our identity shattered. Life in the After becoming something resembling life. An unthinkable exile. Aloneness, inside the non-understanding of the world. Every day, a fight. A reconciliation. Every day, showing up and facing whatever shows up. Keeping the broken bits of our hearts held together with the glue of love inside our silently sighing chests. Still alive.

The invitation at the Circle of Remembrance was to celebrate ourselves for being here. Now. It did not go off like a granade in a small room. No one left in a huff. It was accepted graciously. At the end of an hour and a half, the virtual space was filled with acknowledgement of things to celebrate – our love, patience, resilience and compassion reflected in this poem by Lucille Clifton written in the 1960s. We can replace ‘nonwhite and woman’ with any other phrase:

won’t you celebrate with me

what I have shaped into

a kind of life? i had no model.

born in Babylon

both non-white and woman

what did I see to be except myself?

i made it up

here on this bridge between

star-shine and clay

my one hand holding tight

my other hand;

                        come celebrate

with me that everyday

something has tried to kill me

and has failed.

PS: Circle of Remembrance is an international online peer-support group for bereaved parents that has been effectively working for the past three years and four months. Please visit the website http://www.core-community.com to learn more. Please recommend it to any parents you know who might be struggling alone after a tragic loss.

Thirteen weeks

Date of admission: 2nd Sept 2022 (Friday)

Date of Surgery:     5th September 2022 (Monday)

Date of demise:      2nd December 2022 (Friday)

Length of hospital stay: 13 weeks (91 days)

82 years old gentleman with no significant medical history was admitted for an elective Anterior Decompression of Cervical Canal Stenosis. He wanted to regain his confidence in walking and return to playing golf. He was not on any regular medications. He was not overweight, diabetic or hypertensive. He had no history of heart or lung disease. He lived independently with his wife in their flat on the second floor of a building that had no lift. He went out at least once or twice every day without much difficulty. He was an ardent and proficient bridge player. He drove his car to a friend’s birthday party one week before he was admitted to hospital.

He underwent an uneventful surgery but afterwards he lost power in all his limbs. They took him back to re-operate and make more space for the spinal cord that had swollen up, according to the MRI. That didn’t make any difference. His lungs were unable to work properly as the muscles of his diaphragm became weak. The domes of the diaphragm separate the chest from the abdomen. They play an important part in effective breathing and coughing.  Yes, surprisingly, the nerves to the diaphragm, originate from the neck (C3,4,5). They stopped conducting electricity. His lungs became unsupported.

His doctors said he’ll get better. It was just a matter of time. We needed to be patient. He needed help with his breathing so his windpipe was hooked on to a machine with numbers and waves and graphs and bleeps. He could not speak. No air came through his vocal cords.

Over the next few weeks he regained the sharpness of his mind and found that he was unable to breathe or speak, move or eat, turn from side to side in bed or have any control over his environment. He couldn’t really tell if it was day or night. The machines in the ICU made mad beeping sounds throughout the day and night and no one cared.

Patience wasn’t one of his best qualities but he was patient. Over the next few weeks he regained some strength in his forearms, enough to wave us hello and bye. Enough to blow us kisses and indicate that he was enjoying the music we were playing for him. Enough to bring his hand up to my ears and mouth the words “Nice ear-rings.” He learnt to communicate through his lip and arm movements. He said thanks to everyone who came to see him. He also said, “I love you” more than ever before. He smiled a lot despite his predicament.

His younger son is a writer and a storyteller. He told him a story of two well-known writers of modest means who visited a super-rich investment banker about something. In conversation the banker said he had great wealth, what did these two measly writers have? One of the writers said, we have something you will never have. “Really. What might that be?” He asked with a smirk.

“We have enough.”

After a moment, this patient father on Bed number 19 formed these words with his smiling lips, “I have enough.”

His lungs got infected five times in three months and the morale of his family went up and down like a yo-yo with him. No one knew what would happen next. In between, there were good times – going for a spin on a wheel chair, bowing to the statue of Buddha down the corridor, having bits of tomato-ketchup-flavoured-pringles with tiny sips of Coke, watching sparrows on frangipani trees. But this was not his chosen way of life. He had had enough. His heart had had enough. It stopped. The time to say good-bye left his doctors and nurses in tears too.

Ninety-one days of pure love and deep suffering. The former remains while the latter is done.

May there be peace for all beings everywhere.

“What will survive of us is love.” – Philip Larkin.

Come home, my darling.

I still hear the key turning in the door from the outside and you stepping in. Can you believe it? I still see your face, darkened by the sun. Dressed in your cricket whites, you drag your massive cricket-bag-on-wheels behind you by your left arm.

“Did you take the sun-screen with you?” I ask.

“Yes, it’s in the bag.”

“Did you actually put it on?’

 “Mamma, I’m hungry.”

I still wait for you to join us for dinner. I cook the foods you like, especially on your birthday: spinach-paneer for mains, chocolate mousse for dessert. I wonder what you’d be doing in this realm if you were here. Job? Girl-friend? How silly! Isn’t it? I can’t help it. It’s involuntary. It’s got something to do with the heart. With longing. With missing. With love. It’s not supposed to make sense. You would have had a good old chuckle at my expense if you were here. But you are not and I am. How random is that?

I still remember the first time I felt you elbow-ing or knee-ing me from inside my tummy, as if we had an inside joke between us. I remember holding all three kilos of you in my arms for the first time. I couldn’t believe you were for real. You were all mine. Now my arms ache with emptiness. Is this real?

Do you miss me sometimes?

Happy birthday my darling.

Heaven

It will be the past

And we’ll live there together.

Not as it was to live

But as it is remembered.

It will be the past.

We’ll all go back together.

Everyone we ever loved,

And lost, and must remember.

It will be the past.

And it will last forever.

                      – A poem by Patrick Phillips, on the New York subway.

(“Ghar aa” is a Hindi phrase that means “Come home”)

Yummy!

It would be a bit much to say they are friends. But they are very fond of each other and meet up as often as they can which is about twice a year. They both care deeply for young people and support each other’s work. One is a dedicated mother of five. Keeps a beautiful house and garden. Cooks the best food. Sews gorgeous clothes and looks amazing. The second woman has one child who stopped living a few years ago. She doesn’t care much about her house or garden. Can’t use a sewing machine. Doesn’t pay much attention to her appearance.

The second woman appreciates the first one’s invitation to lunch. They sit at the dining table on top of which appear five large aromatic dishes straight from the oven – roasties, grilled carrots and broccoli, kale chips and baked salmon marinated in exotic spices.

As they settle down with their plates, the first woman starts “My Anne has been challenging since she was little. When she was six and we lived in South America, she got it in her head that she wanted to make a cloth tent. We went to the shops and she chose the materials in the green colour she likes. I put it together the best I could and then she wanted buttons and ribbons to go on it and I did all of that. When the tent was ready, I put it up in the living room before she returned from school with great anticipation. She took one look at it and declared “I no like.” She kicked it. It went lopsided and she went up the stairs to her room.”

“My Mike is dreadfully over-confident. He can charm anyone into telling him their secrets. He can make anyone laugh ….. And my Noel! He’s a big architect in Leeds and I love his girl-friend. She is so down-to-Earth. I am so glad they found each other …. And when they asked me what I wanted for my birthday …. And when we all went on a holiday ….. And when they got engaged …. And my Lisa! She is such a good designer. She comes up with original patterns for her tops and I stitch them for her. She carries her dresses like a model …. And my youngest… Oh! He’s full of ….”

The second woman places her attention on the delicious meal. She has no invitation to speak.

It changes. And changes again.

Over and over I asked myself – Now what? Now what? What happens after a severance such as this? How long do one’s bones bleed? Do the tears ever finish? What does ‘recovery’ look like? Is it even possible? How does one keep placing one foot in front of the other? Where is the road? Where does it come from? Where does it go? How long and meandering is it? When does the screaming in my head stop? How long can I keep up the facade? Pretend to be sane? Is this what a new diagnosis of a terminal illness feels like? Is forgiveness possible? Self-forgiveness? Acceptance? Surrender? All these big words! Surrender what? To whom? Who am I now? What do I do?

No answers. Silence. The tilted earth keeps spinning around its imaginary axis. It keeps cradling me. The sun stays at the center of its orbit. My son stays at the center of my being. My breath keeps coming and going. I grow new eyes. My bones carry my weight even though they bleed. The road appears under my feet. It reveals itself one step at a time. Rumi and Khalil Gibran come and hold my hand. The screaming softens. The wall of bricks that was my body, loosens. I come to know the terror and the joy of being insane, catch glimpses of being free. Respect for those who went before and sadly others, who follow. I stop fighting with the big words and keep it simple. Watch. Observe. See. Open. Let the gash in my heart, allow the light in.

A recent talk for The Compassionate Friends, a charity dedicated to supporting bereaved families.