Note: I just returned from a week in Iceland with great friends. Iceland has been a dream of mine for a long time and it did not disappoint. The beauty and the desolation spurred me to finish this piece. The friends reminded me of what matters most.
We are all living on borrowed time from the moment of birth, it’s just that some of us find ourselves with less to borrow. I chose the title as a ticking reminder to get my ass in gear and do something meaningful.
People’s feelings about death and dying are clearly visible when they spy the books on my table. There is an allergic reaction, even momentary interruption of speech for some. Discussing death is difficult- feelings of shame are not uncommon. In my case, the discussion is both necessary and welcomed and I see no shame in any of it. Conversation becomes uncomfortable when the topic arises, people are quick to dismiss it. Unintentionally, changing the subject or professing to believe in miracles is dismissing the inevitable and is diminishing. I don’t have a better way to describe it.
I am in a different place, I have been forced there by my disease. Thoughts of death and dying are never far away and talking about it is strangely comforting, often leading to very different and more meaningful conversations.
My stack of books includes copies of On Death and Dying by Elisabeth Kubler-Ross, Cory Taylor’s Dying: A Memoir and Nina Riggs’ The Bright Hour: A Memoir of Living and Dying. Not exactly light reading but comforting in its own strange way.
As Kubler-Ross matter-of-factly noted almost fifty years ago, death is an inevitable part of life. It is part of the natural order. Somehow long ago, the specter of death took on shameful overtones as if the dying person were being punished. Worse still was an adoption, by the survivors, of shared feelings of shame, something we know as survivor’s guilt.
A natural death is a logical end of life, an unnatural death is not. In all likelihood, my death will be unnatural, premature due to disease. I am not a fan of the term.
I have faced my reality for over three years- plenty of time for a serious case of mental masturbation.
If all of this sounds selfish and egocentric- it is- because it is.
My attempt at writing is a purposeful leave-behind. A leave-behind is like a stock option except it is more tangible- you can see, feel and touch it.
The leaver has an option to return to collect the item. Or not.
The leavee is left to interpret intentions, an unavoidable consequence of any leave-behind.
I hope my words offer something tangible to return to. Or not.
I have a dresser drawer full of leave-behinds: bras, panties, earrings, and bellybutton rings. It’s not as creepy as you might think, it’s worse. The drawer’s contents are not erotic or nostalgic, they serve to remind me of the women who have passed thru my life and never returned to collect their belongings, they never exercised their option. It leaves me wondering what I might have done differently, how I could have been a better person.
Kubler-Ross’s work pioneered a model of progression of emotional states experienced by terminally ill patients (and their survivors) after receiving their diagnosis. The five stages are: denial (and isolation), anger, bargaining, depression and acceptance. Since her work was first published, it has become generally understood that patients move back and forth between the various stages in non-linear fashion and some get stuck along the continuum. The book can be tedious but there is much to learn. Her approach was a clinical effort to validate the importance of human interaction with the dying. In fact, she is credited with inspiring the hospice movement. The book will be 50 years old next year and much has changed but much more needs to change.
Cory Taylor was an Australian writer who died of cancer; specifically, melanoma. She fought her disease for a decade. Her final work describes her journey thru the stages described above after she became terminal. What initially caught my attention was an article in the New Yorker regarding her participation in an ABC program which addressed taboo subjects. The program was titled You Can’t Ask That where people submitted questions, and, without preparation, the interviewee agreed to answer on camera. Cory describes her questions as unremarkable. They were as follows: Did she have bucket list? Had she considered suicide? Had she become religious? Was she scared? Was there anything good about dying? Did she have any regrets? Did she believe in an afterlife? Had her priorities in life changed? Was she unhappy or depressed? Was she more likely to take risks, given her terminal diagnosis? What would she miss the most? And how would she like to be remembered?
Taylor discusses the interview and her responses in her book and does a no-nonsense job of discussing her views on euthanasia, going into greater detail about her journey to death and her life leading up to it. In the main, I could relate to her with one important exception. She states that she was not religious, did not believe in any higher power and believed that we “are born of nothing and return to nothing”, therefore no afterlife. In my initial read, I accepted her view and continued on. Since then I have revisited her writing many times. Her lack of belief in something greater than herself overshadows the entire work and leaves me with feelings of overwhelming sadness. Despite my feelings, her work is important and well worth reading- she does a great job expressing the realities around her feelings.
Lisa, my therapist, introduced me to The Bright Hour. Nina Riggs lived in my hometown, was diagnosed with breast cancer in 2015 and died in 2017 at age 39. She was a writer and descendant of Ralph Waldo Emerson. Nina describes her home and neighborhood which I know well. I feel certain our paths must have crossed at some point over the years or maybe it is just a wishful notion. In either case, I would have liked to have known her and talked with her.
Riggs maintained her sense of humor while coping with setback after setback. Her writing is a little too cerebral for my taste, but, after all, she is a product of her genetics, her education and her profession.
One of the things that strikes me most about Taylor and Riggs is that they were able to complete manuscripts while undergoing treatment and ultimately death- both books were published posthumously. The energy and focus required is no small feat given the nature of the daily struggles. As mothers and wives, they busied themselves with the notion of what life would hold for their survivors- I believe their motivation and strength came, in large measure, from their maternal instincts.
For Taylor and Riggs, they were offered a glimmer of hope that the “small spot” could be successfully treated and normal life resumed. I wasn’t given the luxury, I was stage IV at diagnosis. Terminal has its own technical/medical meaning, but an incurable illness is, for all practical purposes, terminal when it comes to metastatic cancer.
One common theme in all my reading is the personal individual nature of the journey. There may be a difference in how women and men view it but there are inescapable commonalities.
In my reading and my experience, there are two feelings that are undeniable and inescapable: utter loneliness and a fierce desire to protect the ones we love. The two are intertwined, as if retreating into oneself can somehow protect our children, our partners and our friends from inevitable loss. Like Taylor and Riggs, I would do most anything to protect my son.
My feelings of loneliness resulted from my choice to isolate myself. Kubler-Ross barely scraped the surface on the topic of isolation and lumps it in with denial. In my view, isolation is a separate but integral part of the spectrum of feelings of grief or dying or however you want to describe a monumentally sad event. I chose to step back from those I love in hope I could shield them. I wanted to protect the people who mean the most to me.
I told Lisa in my last therapy session that I did not want my son present for the end of my life. I wanted to spend quality time with him now and spare him the gory details later. Her reaction was a swift and vehement wake-up call to stop imposing my views and feelings on others. It makes sense, but it goes against my nature. Her advice is solid, I am trying very hard to honor her advice but my compassion for others trips me up- it always has.
Life has been reduced to a daily medication regimen combined with a series of medical appointments and treatments. Most troubling is I find myself waiting for someone else to tell me how I’m doing. So far, so good, but some day, there will be a game changer.
With respect to denial, I cannot honestly claim it. Reality set in from the get-go and I prefer to deal in black and white. I struggle with gray. There was no maybe you have metastatic cancer.
Anger, thus far, has not manifested itself with respect to my diagnosis and illness- it is a time waster. I have experienced anger with people and situations that create unnecessary noise and interrupt my peace but the only person I can be angry with is myself and my lifestyle choices which may have contributed to the onset of my disease. Anger is not an emotion that surfaces often in me but when it does, it is intense and requires quick resolution because I fear its destructiveness in me.
Bargaining has not been part of my experience. Who would I bargain with? My concept of God does not include mundane interactions and if it did, what would I promise to change that I have not already changed or promised to change? Bargaining implies a trade-off to better one’s situation. I’ve accepted my situation, plotted my course, and live it the best I can. If I am blessed with a miracle, I will be grateful.
The idea of depression evokes images of someone curled in the fetal position, unable or unwilling to engage with the world. I am not any of that. I realize my mental imagery is inaccurate, I understand there is a continuum of depression and it often goes unrecognized. I’m sure I have experienced depression at various times in my life, but my forays were fleeting. If anything, I have an underlying wistfulness that I do not identify as depression, only sadness.
Acceptance came easily to me- maybe too easily. I lack patience in general, always have, and jumped straight to the final stage. Please don’t misunderstand me. Acceptance was vitally important for me, granting me permission to make important choices.
I believe in choices, they are one of our most precious gifts.
Wisdom to make appropriate choices is another matter. My choices offer control over an otherwise overwhelming circumstance. The most basic example I can offer is my choice to live each day to the fullest and embrace every opportunity to contribute positively to everyone I encounter. It is as simple as saying “hello” or offering a smile. I choose to remain positive. I choose to make the most of each day. I choose not to obsess over the next set of scans or doctor’s appointment.
One of the exercises I found value in, is answering the questions asked of Cory Taylor.
She called them mundane, I found them normal.
My answers are:
Yes, I have a bucket list. I am pursuing it with a passion. I am leaving for Europe in a couple of weeks with plans for additional adventures.
Yes, I have contemplated suicide. I have no desire to end my life, I have a lot of living to do, just less time to do it. My answer lies in my experiences and a desire to avoid them. I have witnessed the final days of many friends who battled cancers- days and weeks filled with pain and confusion. I do not want that for myself or anyone I love. If I could spare anyone the experience of being present for my final days, I would choose to do so. Unfortunately, assisted suicide is illegal in North Carolina and most other states. Maybe my physician or caregiver will have mercy and administer a little “too much” pain medication and allow me to exit peacefully.
No, I have not become religious, I didn’t need to. Although I am not one for conventional religion, I have strong faith in something greater than myself, I am a spiritual person. If anything, my faith has been strengthened by my ordeal, my spirituality allowed to flourish. If you need “proof” of a powerful, kind and loving God, it is all around you. Evidence of God’s presence is clear in the human spirit. People overcome impossible odds, people survive un-survivable situations, unconditional love exists, kindness exists, hands are held, hugs given, and kisses bestowed.
Yes, I am scared. Not so much of death itself but of the dying process where pain and confusion rule- I refer to it as dying badly. Dying badly terrifies me.
No, there is absolutely nothing good about dying. Being given a heads-up offers some benefit in terms of time to interact with loved ones that a sudden unexpected death does not.
Yes, of course I have regrets. The impact of my addictions on my friends and family and a failed marriage for starters. My greatest regret is that I could not sustain a relationship with a life partner. I’ve had my chances. I have enjoyed several wonderful and rewarding relationships with women who might have been my life partner, but my failings led to a parting of the ways. With the exception of two women, I maintain friendships with my previous partners and I am proud of it. My friends are my salvation, but it would be much more fulfilling to have someone to hold close, to sleep peacefully beside and share kisses, morning coffees, hopes and dreams.
Yes, I do believe in an afterlife. I have a little Buddhist in me. Our essence (spirit) is freed to roam, to return when needed to answer prayers for the ones we love and guide them. If I return as a dog, I’ll be a damned good one.
Yes, my priorities have shifted in tectonic fashion. Most importantly, I have focused on taking care of myself physically and emotionally. Sounds strange but I have neglected myself and focused on others as a way of holding my demons at bay for most of my life.
No, I am not unhappy or depressed. I mentioned wistfulness earlier, but I don’t equate sadness with depression. I cannot claim the opposite of unhappiness, that would be absurd. The very idea of leaving this world early is sad- plain and simple.
No and yes. I am not more likely to take physical risks but I am more willing to take emotional risks. Taking care of myself means putting myself out there for all to see, taking the time and making the effort to show love, affection and admiration. By “putting myself out there” I mean speaking the words- I have been guilty of assuming my actions speak for themselves.
What will I miss the most? I will miss my people, every single one of them. In case you are wondering who I mean, read my blog or follow along as we go. I have lot of important people in my life but most importantly, I will miss my son. I have high hopes for him.
How do I want to be remembered? Remember the good parts. Remember the positive deeds. Remember me as a good friend, brother, lover or fisherman. Remember the times we laughed. Remember the times we cried. Remember the times we lived. Most of all, remember I love you.