The Shape of Grief

I've been thinking a lot about grief lately. Back in the days of my psychology training, we learned that grief follows a predictable pattern and happens in progressive stages:
Denial, Anger, Bargaining, Depression, Acceptance (based on the work of Kubler-Ross.

That's not the tune my grief over my father's recent death dances to. For the first week after he died, I was just plain exhausted. This was a completely physical experience. Being with him in the hospital for ten hours a day for two weeks with all chakras wide open left me empty. Once I got home, I lived on the couch.

I guess I expected that I would cry most of the time. Dramatic meltdowns of wracking sobs eventually tapering down to trickles and sniffles. Or at least an hour's worth of steady tears running down my face. Didn't happen.

What did happen was that I would stumble over some flicker of a memory from his hospitalization at random, incongruous moments. While riding the exercise bike or cooking scrambled eggs. I would suddenly be abducted by this memory - staring into his blue eyes; wiping slow tears from his face; hearing doctors use words like failure and damage; watching his chest rise with his final three breaths.

These snatches of memory would prick open some swollen balloon of sadness, and deep sobs would would burst out. Sobs from the chest, that lasted a minute, maybe two. Then back to pedaling or cooking.

It's been a little over two week since he died, and even though I was by his side, I still don't know how to know that he's dead. I don't know how to let his death change my world. Is this strange?

Thinking about grief has also led me to ask what are the social allowances for grief.

We are expected to grieve over a death or a divorce. But we are not given a mourning period for serious illness or chronic pain. After diagnosis, we are expected to jump on the treatment treadmill and keep running after the magic pill. My father was praised for being such a fighter and for not complaining about his infirmities. Is it ok to cry about losing the pieces of life illness and pain take away? Is it ok to mourn for the trip to Paris you won't get to make or the mountains you'll no longer climb? Is it ok to cry because illness had made you too tired or pained to love your family and friends in the way you want to?

Must we be uncomplaining soldiers fighting the good fight? Or can we make room and rituals for grieving over the losses of illness and pain.

Grand Rounds is Up

This week the collection of posts from the health care blogosphere is up at Codeblog: Tales of a Nurse. Have a read.

A Fable: The King & the Lost Family

This is a story that came to me as I sat next to my father's hospital bed. I have no idea where it came from. It is not a story I had ever read or heard. I just told it to him as he lay alert but with eyes closed. I said, "Dad, I have a story to tell you." This is what came out.

A Fable: The King and the Lost Family:
An Homage to Jewish Mysticism and The Rocky Horror Picture Show

A family, father, mother, daughter, and son, are driving together in a car. They are in a remote area, heading to the ocean for a vacation. It is night time and a fierce rain is falling. The father can barely see the road through the rain pounding on the windscreen. Around the next bend the father spots the lights of a great house. He decides to drive there and see if the family can find shelter for the night.

The father knocks on the door. The family waits, shivering in the cold relentless rain. Finally, they hear footsteps and watch the doorknob turn. The door creaks open and a man invites them inside.

The man is wearing the most beautiful velvet purple cloak. On his head is a gold crown adorned with rubies and emeralds. His smile and the tender look in his eyes tell the family that they are safe from the storm. He explains to the family that he is the king of this region and they are welcome to stay with him in his castle for as long as they like.

The family enters into a great hall. They look around and see tapestries covering the walls that seem to tell a story of a hero’s journey. The ceiling looks like it is made of obsidian flecked with gold. It sparkles like a clear winter night sky. The air holds traces of lavender and fallen rose petals. A soft warm breeze dries their clothes and whispers words of comfort into their ears.

The king suddenly claps his hands. Servants dressed in gleaming white uniforms enter the hall. Each servant carries an enormous silver platter with a domed cover on it. At a signal from the King each servant uncovers his dish. The sweet and pungent aromas entice the family. Each family member finds exactly what they most hunger for. The father finds roasted meat. The mother finds sweet potatoes covered with a marshmallow cinnamon glaze. The daughter finds a salad of heirloom tomatoes, golden beets, and fresh basil. The son finds crisp, tangy chicken wings. The servants set the platters down on a long oak table.

The family eats until they can eat no more. A knight dressed in a red satin doublet quilted with chain mail points toward a simple wooden door. The family passes through the door and finds themselves in a vast library. The walls are covered with shelves that hold books from floor to ceiling. The family circles the room slowly and sees books by their favorite authors glow as if a light were shining on them.

The King is seated on a purple throne near the east wall of the library. He beckons to the family. They notice that there are four chairs near the King. The father sits on the blue chair; the mother sits on the brown one; the daughter sits on the green one; and the son sits on the yellow one.

The King begins to tell them about his kingdom. “My kingdom is far away, but very close to your heart,” he says. “It is a land that has known only peace for centuries. It is a beautiful land with sweet, cool blue rivers, fields of tall green grass; soil that is deep brown and so fertile that it grows all crops; and a yellow sun that warms the people with love and kindness.”

The King’s voice grows quieter and quieter. It becomes a lullaby the family has known all their lives. His kingdom turns into a dream they had when they were little children and had forgotten.

To the family’s surprise, the King asks the father if he would like to journey with him to his kingdom. The King says to the family, “There is no need for you to worry –the father will only be gone a short while and you will join him soon enough. The father will build a big house that will some day be your new home. And while the father is gone you can remain in my realm as my honored guests.”

The father kisses his family good-bye and stands next to the King. They vanish, as if they stepped through a rift in the air.

In an instant, they arrive in the Kingdom. The father sees all the wonders the King had described - the rivers, the grass, the fields of thriving crops, and the golden sun. The father also sees something, way off in the distance, something the King had not spoken of. He sees people slowly approaching, singing wordless songs. He knows these people but he cannot yet say their names.

The King leads the father to a hill. They climb the hill and on the top the father sees a large flat square of land within a grove of eucalyptus trees. From this land, the father can see the far away ocean and can even smell the salt water in the air. The father however is puzzled. He does not know what to do on this land. The King explains, “This is to be your new home.” The people are coming to help you build your house here.”

As the people draw closer, the father begins to recognize them and know their names – Nana, Poppy, Hilda, Davey, Shirley, and more. They are bringing cedar planks, tools, nails, glass – everything the father needs to build his house. These people welcome the father with long hugs and beautiful smiles. The father and his people begin the building.

The father is so happy in this Kingdom and so absorbed in his work that he looses all track of time. He cannot tell whether seconds or years have gone by when one day, he looks north toward the ocean and sees newcomers walking towards his house, his house which is now seven stories high, with eighteen rooms, and huge windows that look out in
all directions.

The newcomers walk slowly, as if they are lost and searching for signs. As they draw closer, the father realizes he knows their names and calls to them. They run in the direction of his voice.

Grand Rounds is Up

It's at Sharp Brains this week. Have a look.

Also check out Patients for a Moment at Duncan Cross. This is a collection of posts from patients.

My Father in the Hospital

We, the family, wander the yellow corridors of the ICU, searching for answers. The doctors and nurses turn away as we pass them, looking hard at the clipboards and folders they carry. They know that eye contact will mean a prolonged hallway conversation that will take them away from their real job, their medical job. They know that we will batter them with questions for which no answers exist in this world. Questions that begin with, "What's the probability that....?" or, "How much longer...," or, "how do we know when to stop..."

We hear the sounds of the machines as they beep steadily while dripping brown and white fluids into his veins. We hear the sharp and sudden blast that means one of the many numbers on the monitors we watch with vigilence has gone out of range. Some noises make the nurse come into the room, while others bring a whole platoon armed with new machines. After eight days we understand the rhythm of the machines. They become background music to this dance of dying.

I stand by his side holding his hand. I lean over him stroking his brow. With a soft voice, I take him on journeys to happier days. I tell him about the sweet, cool blue river that flows through him and around him, connecting him to all the healing forces in universe. I tell him he is surrounded by love - love from the people who stand around him now, and love from everyone who has ever loved him. I tell him that all that love enters his body with each breath and makes the waters of that blue river even sweeter.

On October 15 at 10:40 am, my father died. I, my brother, my husband, and Maisie, the woman who had been his caretaker for the past year, were by his side. There were three breathes and then no more.

His rabbi said that he was an "adam shem tov" - a man of good name. He said his death was a holy one.

He taught me about happiness, and he taught me how not to throw a baseball like a girl.

I love you Dad and will always miss you. Have a good passage.

My Father is Moving On

He is very ill and yet still shows his loving essence. It's been a terribly sad and a terribly sweet time. Does that make sense? Our thinking and emotions have such a clarity to them. Luckily we all have a quick and twisted sense of humor we can rely on to bring a smile to his face and a breath of clean air into the hospital room.

Looks like we're saying good-bye to him.

Thank you for your good thoughts - we need them.

I'm taking a bit of a break

My father is the hospital ICU. My husband, brother, and I are by his side. I'm going to take a hopefully short break from blogging. Send good thoughts our way. And thank you all for reading and for your wonderful, honest comments.

A Pain Flare Up

This week I had what many pain communities call a "flare up." My father is very ill and that tipped me over the line.

But that phrase, flare up, is too polite for me. I think a spike in pain deserves a more militant, aggressive, even violent nom de guerre. Because it is a guerre (French for war), after all. A fight in which pain plays dirty.

This enemy, pain, sneaks across my threshold, disguised at first as a wee bit of pressure. Then once it has positioned itself deep inside my core, it digs in and brings out its weapons.

It has long spears and axes, clubs and tiny daggers. It pounds and stabs in an irregular beat, which makes it unpredictable and dangerous. Soon the intervals between beatings diminishes. The pain becomes constant. Nowhere to hide.

Pain's most foul weapon is fear. Fear is the guerrilla warrior. It hides inside the pain, like a stealth poison, and then slowly infiltrates. It fills all the spaces pain does not reach. It latches onto the breath and grows with each inhalation. It squeezes the heart into a tight ball and fills the minds with images of a dark, bleak forever.

I despise pain; yet it is part of me. I want to wake up one day and find a note on my pillow from pain. The note says, "So long and thanks for the ride." Then I get to go back to a life of blissful ignorance where pain is a dying dream that some alternate version of me once had.