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The “ouchy” process about writing a book about the hospice dying process

 

 

My first version of From Sun to Sun had a different title, and was written in a chronological, reportorial manner. I assumed the reader would come to awareness about the end of life experience through factual stories. But “awareness” was not exactly what people sought. They wanted gentle, honest, non-religious, not dogmatic stories of people they could relate to when it came to the process of dying.

 

Three literary agents kindly offered me advice on how to improve “this little gem” so I returned to my manuscript with a new set of “eyes, ”excited to create a book that reached a broader audience. I began the process of approaching my hospice patients’ stories from the view of the non-medical reader, which challenged me to write with a deeper intellectual, more colorful, emotional, and tender approach to the process of dying. I knew my readers wanted an honest book.

 

As From Sun to Sun: A Hospice Nurse Reflects on the Art of Dying began taking a different shape, the agents and editor advised me that I needed to share more intimate facts about myself, or readers wouldn’t fall in love with my hospice patients as much as I did. This fact didn’t sit well with me because I’m a private person. But I knew from my personal love of reading that I owed readers an experience and story that would be worth their precious time and would teach them to approach the topic of dying with an open heart and open mind. I knew the readers might be cringing and hesitant to read about a life-topic they really wanted to run away from; their own dying process.

 

My purpose was to give an honest account of my patients while building awareness of the need to get going with the conversation about what how you want to die, and to know the facts about the dying process. I wanted the reader to come to their conclusions about what the dying process may look, sound, feel, smell, and “taste” like. I honored my patients for being courageous and at the same time wanted to give them a hug for simply being on this earth.

 

Eighteen months, sixteen revisions, a sore neck, strained wrists and an added fifteen (body) pounds later, From Sun to Sun was completed. The process of dying now had twenty-one diverse “faces,” and bits and pieces of my life as a nurse. These personal stories are important for the reader to understand as they navigate the “why’s” and “how comes” and the question asked me so often, “How can you do this work?’

 

I want to encourage you to document your story in any manner that resonates with you. Be it poetry, music, puzzles, short stories…you will find your voice, learn a lot about yourself, be confronted with your false beliefs and, I believe, will respect the time and skills it takes to be a writer.

 

Whether it’s a book on the process of dying, a how-to book on making the perfect truffle, or a wonderful adventure into your life, I encourage you to try. Just keep going. You owe your knowledge to the world.

 

 

 

 

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Platitudes: what you say when you can't think of anything nicer.

In this series of blogs, I’m going to break down the scripted sayings we’ve blurted out without thinking. They sound pretty effective and considerate when they’re said in the movies, during a sermon, or in metaphysical conferences. Secretly we want to believe these words, these seemingly perfect phrases of encouragement.

 

While working for the last forty-one years as a nurse—with the last fifteen in hospice—I’ve heard these supposed “pearls of wisdom” hundreds.̶ perhaps thousands ̶ of times. I used to just grin and bear them, until I had a patient who went ballistic on my student. He was right. She was wrong. After the sobbing and ego bruising, she learned a perfect lesson.

 

It went like this. Peter is a doctor, a brilliant surgeon in our hospital. He’s twenty-nine years old, just got married a year ago, but now has one of the worst, most aggressive brain cancers possible. There’s no getting around the reality that he is going to need heavy, mind-dumbing medications to keep him from having seizures, narcotics round-the-clock, and who-knows-why-they-work steroids. We’re talking maximum doses here.

 

My nursing student –I’ll call her Mary, is a senior. She’s earned the privilege of being assigned a complex patient in the ICU. As her instructor., My eyes and ears were always monitoring all my students; paranoid that they’d screw up and harm someone. By the way; I like my life and they work under my license.

 

“How are you feeling this morning, Peter?”

 

Obtunded, he answers “Better. I want to go home, It wouldn’t be fair to Glen. I spend all my time missing her.” Glen is his wife.

 

As Mary listens to his heart, she happily responds, “Oh don’t worry. Sometimes hardships like this will make your marriage stronger. God doesn’t give you what you can’t handle.”

 

Peter leaned forward, which made his head hurt. “What the fuck do you mean? How can you say that? Our life was perfectly beautiful̶ before cancer. You have no right to say that. Think before you speak !”

 

I heard him. As I went into the room, Mary was running out, crying. I gave Peter the “I’ll fix this” sign. He knew me; I’d worked with him.

 

“Talk to me. What’s going on in your imagination?” After a few minutes of witnessing her shoulder-heaving tears, I said to Mary, ”You were just given a wonderful gift. This may sound harsh, but would you tell a seven-year-old girl who’s being raped by her uncle the same thing? Do you realize how belittling and disempowering this statement is? I know you weren’t trying to be mean, but it is cruel and insensitive.”

 

“But, I thought he may look for some good in his life. Sometimes people rise above adversity and use the experience to better the world.”

 

“Good?’ There’s nothing ‘good’ in his life right now. Nothing. And it’s not for you impose your ideals on him. Until you are in that bed with the same disease, stop. Medical warmth will not serve him right now. He’s deeply grieving. Human-ness, compassion, and acceptance is what he needs. So get yourself together, apologize to him and thank him for the life lesson.”

 

 

 

 

 

 

 

 

 

 

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How my book dragged me into writing it

Wheel Spoke Old Car ImageI handed the transcriptionist a Ziploc bag with eight micro-cassettes.

She gave me the raised index finger—wait a sec—sign.

“We’ll have to get the machine out of the back closet, but I think we can find someone to get these done for you.”

I’d been dictating my memorable hospice memories into a hand-held Dictaphone for the last fifteen years. At stoplights, waiting at drive-throughs, sitting in the park; I burned to document these stories because no one I knew wanted to hear me talk about them. I eased my ego by telling myself that everyone is too busy, but the truth was that almost everyone was afraid to hear what they perceived would be horrible stories about pain and suffering. I realized that no one wanted to talk about dying or death. Only those who’ve witnessed this sacred life event understood why I wept when I saw a father holding a daughter, or when I witnessed two very old people laughing, or, or the reason I yelled at two women as they complained incessantly while they stood in line at the grocery store. My friends and family simply assumed my Latin heritage made me “overly emotional and demonstrative.”

But that wasn’t the reason.

The emotions were triggered by memories; countless lessons learned from the beauty, the tragedy, the un-decorated rawness of pure love. The stripped bare examples of love in all it’s forms. Even when it wasn’t pretty.

So, I decided to take a year off of working full time. I took the copious transcription (I never realized I said, “Um,” so often) and shaped them into a journal that I anticipated my attorney would give to my three children after I died. After all, they were profoundly affected by my life as I served the dying. I was on-call two or three nights a week, and sometimes it made me a very weary mom.

I hired a retired English professor to keep my tenses, punctuation, and grammar in check. Then I sat. And sat. A fifteen pound weight gain, and a realization that I do not thrive as a solitary creature, were two of the good and bad aspects of sitting and writing.

A dear friend who was dating James Patterson’s first literary agent, sat on my couch reading the first spiral-bound copy of my hospice memoir, and quietly “borrowed” it for her lover to read. He generously sent it to a famous editor, and she was extraordinarily kind, offering to help me get the manuscript in shape. Working constantly, fixated, obsessed and running on adrenaline and fear, I completed the hundreds of questions, corrections, and requests.

A book coach, two editors, two years, and six beta readers later, I had the story I was pleased to share with the world. I felt as though I was the voice that was obligated to share the end of life experiences of these twenty-one people in a non-religious, non-dogmatic way.
The face of love is different with every individual and every family. I believe these stories had to be shared, because I witness people afraid to talk about the end of their life.

These stories will show people that love has many faces and is individual, complicated and valued. I simply want people to be easier on themselves, and embrace the differences of their particular journey.

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That damn fear thing

WhiteHorseInSpringPastureImageAs I witness my adult children navigate the societal waters, I am more rabid about not allowing someone else to define them. One of my slender daughters sees herself as “a fat beast,” the other as “not fitting the suburban mold,” and my son is doing the “tough guy salesman” stereotype that he feels he needs to do in order to succeed in sales.

But when you are facing your death, and all the lacquer of these definitions begins chipping off, you are finally free. Free to be your true self. Your body has let you down now, so that uber-defined bicep and glutes are no longer part of your image. The glorious hair you fussed over for hours every week may now be thin and dull. The libido that was part of your “game,” is now dampened, and your voice may be quieter.

Is the thought of this freaking you out? You don’t really want to read this? (C’mon, keep reading, it won’t be that bad.)

The spark in someone’s eye is always there, as is their openhearted kindness and witty and wild sense of humor. I’ve laughed so hard that I had to excuse myself from a patients’ room. In those instances it’s usually a private joke that the patient and I share. And I’ve excused myself to “go get something in my car,” as I stand in the bushes, bent over in laughter. It’s usually prompted from a wink or a look the patient gave me; as if they are saying, “I told you this person is a piece of work!”

So make this information GOOD news! Stop the fear of dying and start living a full life. Just do it.

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I felt badly for my hospice patient.

Mr. Stone was in obvious physical pain. When I told him that I felt badly that he was suffering from being in so much pain, his response surprised me.

Sitting up, he quietly told me, “Nina. I said I was in pain, I am not suffering.”

He challenged me to examine my assumption that pain and suffering go hand in hand. I was embarrassed that I wasn’t thinking beyond this belief that is so common, especially in our country. I was disappointed in myself for making this assumption so easily.

I knew this! I’ve experienced this too. When I was in labor during childbirth, I was anticipating a good outcome, so I was not suffering; I was simply in pain. When I began working out to get in shape I was experiencing intense soreness of my muscles, but I was not suffering; I was in temporary pain. When I was getting vaccinations for travel overseas, I was uncomfortable, but I really wasn’t suffering because I couldn’t wait to be traveling again.

How many times within the nursing and oncology specialties do we make broad assumptions? We truly need to examine these.

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The Beauty of Dementia

woman on shore imageI waited. And waited.

I believed that if I were patient, my mother would tell me the full story of her childhood, the cause of my sister’s death, and clarify three major details of my childhood in Flushing, New York. I would honor her privacy, not push her into something that may bring her pain. I had a sense of the answers, but needed to hear them from the source.

*****

Now it’s too late. Her dementia has overtaken her sense of time, person and place. I sensed the mental disarray a year ago, and chose not to press her for answers. I kept telling myself that the time to ask her would become clear, just wait. I thought her memory loss would be a gradual slide, not this jarring leap it had decided to follow.

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But you know what?  It’s okay. I no longer remind myself to wait and don’t have to wonder. I can allow the Mystery to be. My grand familial hierarchy will never be mounted behind cheap glass over a fireplace mantle, and the nagging questions that occupied my imagination for decades are now laid to rest.

I sit and witness as she spins through bits of memories; flashes of some mix with others. She guesses whose face she’s looking at in the frame on her bedside table, and wonders when the decades-dead aunt will be home. She smiles when the masculine face of my deceased father is processed as her little grandson. And she kisses the photo of my delicate sister, long dead, who she says she’s meeting for lunch today.

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I join in her imagination, and choose the outfit she’ll be wearing for the “lunch date,” laughing as we mock our taste in clothing. Even though she had impeccable style, she now mixes the wrong plaids with florals, and fleece with lace. She is happy. She now has a childlike innocence in her approach to people. And guess what? Now she’ll dance for anyone, where before she thought dancing in public was quite “low brow” and cheapened an elegant female.

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Perhaps within her dementia—the altered interpretation of sensations by which she navigates her world—I will find portions of the answers I sought. If I don’t, then I rest in the fact that I’m now free to interpret the past as I hoped to be my truth.

Perhaps we really were descendants of Spanish royalty! Perhaps my sister did die from pneumonia. And just perhaps I got my curly hair from my Puerto Rican grandfather. Sounds good to me!

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I Am a Hospice Nurse

abstract color feather imageDo you have a family that expresses itself in a loud, animated and somewhat argumentative style?

Does your family keep their emotions in check and a single tear will be a sign of over-the-top expression? Do you come from a different country and want your end-of-life traditions followed strictly?

Did your father—who is now actively dying—tell you that he ate Kryptonite and will never die?

Are you waiting for your boyfriend who is within a few days of his death to tell you he loves you for the first time?

Are you part Native American and want your body covered in flowers and herbs after you pass? Do you want me to hide your secret so your family won’t be affected? Do you want me to keep you covered so no one will see the tattoo they never knew about?

Do you want to remain awake, or be “snowed” during your death? Is there anyone you want me to call? Should I apologize to someone for you? Deliver a message for you?

You want me to read this poem at your memorial service? I hope I can hold it together.

I’m a hospice nurse. I can be who you want me to be in order to honor your life, your individuality and your wishes. I must keep you safe—emotionally and physically—but after those things are attained, I am yours to assist you to the precipice, the cliff of life.

I promise to make your leap one of grace and honor.

I have the tools. Allow me. I am yours.

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Nope, it's not what you think it is.

small covered boat on a placid late with wakeThe end-of-life and death experiences are spiritual journeys, not religious ones.

To paint the experience in a religious light, aka “you will never die!,” you diminish the sanctity and magic of the event and may cause the dying to suffer greatly; not believing they’ve measured up to the strict standards of the religion.

I’ve been a registered nurse for thirty-eight years, with a concentration on hospice for the last eighteen. I began my nursing career in a magnificent facility: The National Institutes of Health (NIH) Clinical Center. Next I had successive responsibilities, first at a tough inner-city emergency room, then at a community hospital, then as an intensive care unit float nurse in a major city hospital, and I also taught nursing a few years. Finally, I became a Hospice and Home Care nurse in the a community and lived on a small horse farm as I raised my family.

Working with the dying, I became tired of the narrow choice in books about the subject, mostly best-selling books with strong religious overtones. I was inspired to write my memoir after complaining one last time that the public deserved to read about the real end of life experience, without all the veneers of guilt, shame, redemption and repentance. (As I write this, I’m reminded of the forty-five year old man with slight development disabilities who kept failing the tests for admittance to the priesthood. Sadly, he had had an anxiety-laden death because he didn’t think God wanted him.)

My nonreligious memoir about dying will anger some people and others will begin praying for my soul. So be it.

I was raised to be a daily communicant Roman Catholic, by a Puerto Rican mother and an Old World Italian father. I know the Latin Mass verbatim and when I travel around the world, the first thing I do is go to visit the neighborhood religious edifices. I love the scent of incense, the sound of the prayers from the altar to the minarets. As I I’ve traveled around the world, I’ve eaten in small cafes where the locals eat. In Turkey, I learned that Jesus and his twin brother Thomas had lived in a Buddhist temple for fourteen years. Thomas left early, but Jesus stayed. As I read the great books, I began to realize that Jesus says the same thing as Buddha. When man began translating his deeds and words decades after he died, there was great journalistic license taken to “modernize” these texts. The translations certainly are a reflection of the times—patriarchy, feuding kings, wars, violence and the oppression of females and the suppression of sex as an evil are ideas that run throughout the great books. The contradictions call for violence and hypocrisy is evident in the various versions.

If you are still with me, you know this.

This is why I wrote my memoir, so readers can witness the real lives at their end, in the stories of the people I have cared for. When all vanity is stripped away, the body is weak and preparing to shut down. But the spirit! Ahh, the love, the quieting of the mind that can take place—that is when we are most alive.

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