On life and death
What I like about death is everything that precedes it.
The journey, the joy, the pain.
The life. The fire that feeds it.
What I like about death is
The circle around the sun
Return of the laughter.
The return of expiration
The return of inspiration.
Matter cannot be created
Every Life matters and cannot
Come out little girl
It's time to shine your light.
No need to cower in the corner
Nor run in fright.
You are safe with us.
You hit 10 on the Richter scale
Sitting on the world's greatest fault line.
It's no fault of your own
So shine girl shine.
You are safe with us.
The battle is not over for you.
The white flag of surrender
Was your only choice.
Sad that it renders
Loss of hope
Loss of innocence
Shine girl shine.
You are safe with us.
Every year I go to Vermont to ski and snowshoe for a week. I take a hike up to the chapel in the woods and say a prayer for my parents. Nine months ago my mother passed away. These paintings I offer up to her as my prayer of remembrance and gratitude.
The first one was inspired by a painting. The second one was based on a photo I took while snowshoeing.
We are sitting at the dining room table overlooking the patio. The trees in front of us have the beautiful shades of autumn. We are eating two types of chowder and shrimp cocktail. This is the best meal, my father says. He is eating heartily. I’m glad. Trying to fatten you up, I tease. When we are finished we retire to the “living room” a few feet away. He looks around the room and says he is pleased and comfortable with the new apartment. We brought most of the furnishing minus a few geisha dolls and an array of angels and madonnas. The apartment has a more masculine feel. It feels uncluttered and relaxing. He looks more rested these days. I notice a quiet air about him. He is in deep thought. I still miss her a lot he says. He shakes his head. This time he is not laughing or smiling. He is no longer in the denial stage of the grief process. He has accepted that my mother, his wife is no longer living as we are. But where did she go?
Where does any living thing go after what we call life? Temple Grandin asked this same question. I recently viewed the HBO film about the well known woman with autism who went on to become a PhD graduate in science and animal rights advocate. I also went to hear her lecture on autism and was inspired enough to read her book on the subject. People “on the spectrum” are characteristically socially awkward. They have a neurological wiring that is different than the general population yet two scenes in the film touched on a universal theme. The first scene she witnessed a cherished horse’s death. But where did he go? The young Temple asks. In the second scene she is at a funeral for a beloved teacher and mentor. She is leaving the funeral and her mother tries to teach her the socially correct behavior. Temple says He’s not there. Where did he go?
I have asked my self this same question so many times. My Catholic upbringing told me that people go to heaven after life on earth. But where is that? What is that? Science tells me that matter cannot be created nor destroyed. So where does the spirit go? I sit with my father and talk about my mother. Her urn is bright and colorful so representative of her personality. The urn is set on the Asian themed curio in a prominent area of my father’s apartment. It holds the last physical matter of what we knew as my mother. The room is permeated by her spirit. In order to answer the question where do we go we must ask ourselves where are we now and what is our purpose? What is life? What is life after life. For now I just respond to my father, I miss her,too. Stay healthy,Dad. I need you around for awhile longer.
In “The Namesake” by Jhumpa Lahiri there is a scene where Gogol’s father frets that he forgot the camera. He is walking with Gogol. “Try to remember it always, ” he said once Gogol had reached him, leading him slowly back across the breakwater, to where his mother and Sonia stood waiting. “Remember that you and I made this journey together to a place where there was nowhere left to go.”
It’s been five months since my mother passed away. I spend a lot of time trying to remember. I started to write in her final weeks for just that reason. I was afraid in my grief that I would let the memories slip away. My sister would often reminisce about our childhood and say Remember when? and I didn’t recall the event or had only a vague recollection. Sometimes it was the memory of being told of the event. Sometimes it was the story being retold time and again. At first I worried I might have early dementia or maybe I fried too many brain cells in my teenage years. I came to realize that being the youngest I was often too young for some of my sister’s memories to be imprinted on my brain. I also began to realize that I had my own memories and experiences. Some of these events and memories are catalogued in the hundreds of photos I have. Others are forever in my heart and mind.I grew up in the time before selfies. I suffered the generation before digital photography. I existed in the time of fretting over forgetting the camera. One needed first a camera. Then the film had to be fresh. It was necessary to send a complete roll out for processing and the eternal wait for the envelope to arrive in the mail. Color film was a novelty. In short, photography was time consuming and expensive. Best to be saved for that special occasion.
My mother had boxes of photos. I have been going through them and finding tokens of those special occasions. My mother holding me with my family sitting on the couch before my baptism. My graduation from kindergarten. My first communion, confirmation, graduation from 8th grade and high school. My nursing degree ceremony. The story of my life in pictures. My mother has her arm around me in a maternal pose. In my pictures, those of the digital age it is I who has an arm around my mother, in a protective manner. I cherish the pictures as they jog my memory and bring my mother alive again.
I wonder about the memories that aren’t in the box. I think about the times I must remember. I think about the journey where there was nowhere left to go. I wonder what it’s all about, this journey called life. I try to find solace in knowing my mother was okay with the journey’s end. I, like a child, want to scream, I don’t want it to end. So I listen to Krista Tippett talk about spirituality and the meaning of life. I read Einstein and Stephen Hawkings and wonder if there is a mathematical formula that can tell me the theory of everything or at least tell me that there is no true dimension of time and therefore no past and no future but only now and we are all part of the here and now and that there is only space/time. I want to know that the universe is ever expanding. I want to be both a particle and a wave. I want to travel at the speed of light. I want to know if two trains are passing each other with me in one and my mother’s spirit in the other, will she still see me as her child when I wave. I think about my own mortality and that of others that I love. I think the afterlife. Where do we go? What do we become? I remember telling my mother I didn’t want her to die and she said everything will be all right but it’s still not all right.
Sometimes I sit quietly and remind myself of another Indian character, Simit Patel. In The Best Exotic Marigold Hotel he quotes John Lennon. Everything will be all right in the end. If it’s not all right, it is not yet the end.
“So this is the way it unfolds. In the absence of what people like my grandfather could count on- a vast extended family constantly on hand to let him make his own choices- our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.” – Atul Gawande, “Being Mortal”. As I read these words from Dr. Gawande’s bestseller their importance resonated with me. After all, I had spent the last last three months ruminating over every detail of my mother’s death. I wondered if the medication had been restarted earlier would the outcome be different. I thought about her doctor’s words stating that we are putting band aids on the problem and how I thought then just put the f-ing bandaid on! And yet I knew the doctor was right so I agreed to consider his plan. I agonized over whether we had done too much in the case of the PIC line or too little by not being aggressive enough. Dr. Gawande states “At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality- the courage to seek the truth of what is to be feared and what is to be hoped…But even more daunting is the second kind of courage- the courage to act on the truth we find… One has to decide whether one’s fears or one’s hopes are what should matter most.” But whose fears or hopes? The patient? The family’s? The medical team? He is referring to the patient but the patient does not exist in a bubble. It takes a village to help the elderly.
The courage I needed was in the truth I would find. The truth was in the conversation that started back in 2008. It was just another ordinary day. I had invited my parents over for dinner. They appeared happy and looked forward to a good home cooked meal that I jokingly slaved over. My father usually gave me “5 stars”. “Dessert comes with the meal” was my usual quip. On this occasion my mother told me they had been to the attorney to discuss their health care plans. Information was often passed to me on scraps of paper with my mother’s handwriting. Today she had a blue folder. The contents were typed on paper with a letterhead. This was serious stuff. My parents told me that I would be in charge of health care decisions for them. I was their youngest child but due to my RN license and my close proximity to them I was the obvious choice. We discussed what they didn’t want: no tubes, no machines. They told me they were to be cremated. They had made all the arrangements. My job was to carry out their wishes. My parents were in good health at the time. As I nurse I understood the importance of designating a health care proxy. I was glad that they were proactive in their health care. They started the conversation that all families should have before a crisis when there is a pragmatic plan without the emotion attached. This piece of legal paper and the subsequent conversations with my parents about end of life choices has saved my sanity. I know without a doubt that I upheld my obligation to my mother. “Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships,establish their legacies, make peace with God, and ensure those who are left behind are okay. They want to end their stories on their own terms. The role is,observers argue, among life’s most important, for both the dying and those left behind.”
I would consider my mother’s “dying role” to be from September 2015-April 2016. During this time my mother was on a carousel of hospital, rehab, home. Each step of the way we were confronted with the question of whether or not my mother was safe at home with an 89 year old caregiver, my father, her husband of 63 years. My honest answer to myself was safe enough. I certainly understand the importance of safety. It is always the focal point of national guidelines for nurses. However my conversation with my mother convinced me to focus on putting life into her time on earth rather than time into her life on earth. Elderly people want to spend time with family. Studies show they spend more time being and less time doing. My mother enjoyed the company of family. At home,in the familiar surroundings, she felt safe and secure. Sure she ended up on the floor and couldn’t get up. My father made her comfortable with blankets and pillows until help arrived many hours later. When I saw my mother propped up on the floor with a snack in front of her she looked like a kid at a sleepover. Imagine my surprise when I read about a similar scenario in Dr. Gawande’s book. This was the new normal in my parents’ life. I called it The Adventures of Mae and Wil. The point is that although those in charge of patient aftercare in nursing home rehabs and hospitals saw my mother’s situation as less than optimum I believe they were using the wrong criteria. The criteria that I used was What does my mother want? What can my father do safely? We got extra services and kept my mother home. She was living her life as she chose.
The last month of my mother’s life was difficult for the family. We knew it was the end of the carousel ride. Coming to terms with your mother’s mortality is gut wrenching and heartbreaking. My mother was aware that her life was coming to the end. She told her children she loved us. She said she was happy. She had many family members come to spend time with her and pray with her. She saw in her great-grandchildren the legacy she was leaving behind. My mother left this world in peace. She knew she was loved. She left on her own terms.
“For human beings, life is meaningful because it is a story. A story has a sense of whole, and it’s arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute – by – minute levels of pleasure and pain miss the fundamental aspect of human existence. A seemingly happy life may be empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves. Unlike your experiencing self- which is absorbed in the moment- your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works as a whole….and in stories, endings matter.”
It was the first day of my summer vacation. I went downtown. To look for a job. No no no! That is the start of a Cheech and Chong skit from my childhood days. However, it was the first day of my summer vacation. I did go downtown but the purpose of my visit was the New Bedford Folk Festival. It was a family event with music, crafts, food, and a lot of good vibes. I grew up listening to folk music and still enjoy that it is the people’s music. While American History teaches what the rich and powerful are doing, folk music teaches us what the rest of the country is doing. It may be stereotyping but it seems the men lean towards broken romance, drinking, politics, and choosing sides during wartime while the women sing about ancestry, home, sisters, and mothers. All sing about love and unity and a sense of belonging. It was during one of the workshops that Anne Hills sang an adoption song that was about longing for a mother. I wept quietly in my seat. My father rubbed his face. We said nothing of this to each other. Kate Taylor sang of the loss of a friend and a red-tailed hawk that showed up everywhere. She felt the presence of her friend whenever the hawk presented itself. Garnet did a reading from his book about the difference between men and women folk singers and we all laughed in this strange fog of joy and somber. There is something about folk songs that expose the bittersweet elements of life. They talk of the joy of the return after the sorrow of being away. They talk of the wonders of life of a person that has passed away. They tell a story. They honor those who came before. They challenge us to do something for those who are to follow.
I returned home that evening feeling good after a day of song, reflection, fresh air, and time spent with my surviving parent. I sprawled out on the couch and reached for the remote. Being a bit of a tv geek I scrolled down the on demand documentary list. The Heart of a Dog. That sounds fairly light and breezy. NOT! The narrator, it turned out, was the wife of Lou Reed known for take a walk on the wild side. In the documentary she narrates the physical decline of her dog and her experience of losing her own mother. I was like oh boy I can’t do this, but I was so engrossed. I felt this woman was telling my story. It was like the Roberta Flack song when she sings, ” I was flushed with fever. Embarrassed by his song. I felt he found my letters and read each one out loud.” How did she know this about me? Why was she telling my story to the world? Because it was our story. It was the shared story, the scripted narrative of a daughter who lost her mother. That is why songs, and poems, and memoirs, and fiction resonate with us. The chords are the same even if the melody is different.
The story teller said she went to a monk for guidance. You can FEEL sad without BEING sad. OMG. That is exactly what I am experiencing. I don’t want to give up the experience of feeling sad about my mother. I just don’t want to be sad. It’s been about 10 weeks since my mother passed away. I think about her all the time. Most of the time the memories make me smile. I want that moment back. I want to tell her about my day. I want to cook her a favorite meal. Sometimes I just cry and tell her I miss her. I tell her I feel sad but because of her I won’t be sad. I look for her presence in all things joyful, on the wings of the birds, and every wave that washes to shore.