Cynthia Stock

An amazing author for your soul!

The road to self-publishing

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My Book Baby

 

I never dreamed of being a writer, but I have always been one. I “journaled” for many years. Back then I called them diaries and included graphic drawings, a pressed daffodil, retrieved from our front yard after a tornado, and a desiccated silverfish that squeezed between the pages and died amid the purples and pinks of my colored pens. As an adult, I took creative writing classes, read, and read some more. My first novel started as a short story and developed into my second child. Members of my small writer’s workshop told me my main character, an eight year old boy who experienced life with a perspective enhanced by circumstance, not age, needed to tell his story in a bigger world.

Any parent knows it is a job that requires twenty-four seven vigilance. It was no different with my book baby. I suffered sleepless nights when the boy wouldn’t leave me alone. I’d awaken and see him squinty-faced in overalls, a single ray of sunshine lighting his presence at the side of my bed. He never spoke, but I heard him. Somehow he communicated what part of his story I needed to tell next. I sat for hours at the computer and created scenes where my character grew. I submitted chapters to workshops and cried when I had to excise parts to make the exposition tighter. I eliminated unnecessary, beautiful words, the kind that roll over your tongue and come out a physical sensation. I agonized over the constructive criticism of a professional editor. When I finished the rewrite, I felt satisfied, almost ready to call myself “author.” Think again. In a talk about creativity and art, Phillip Glass said he didn’t feel his music was complete until it had been heard. I understood. I wanted my child to be seen and read.

The second part of the author’s journey began. I was ready for anything with one limitation: I wanted my book in print before I turned sixty-three.

In the course of my writing education, I took classes from a community writing organization and a local university. The university instructors provided a glimpse of the publishing process: acquisition of an agent, sale of the book by an agent, purchasing of the book by an established house, and marketing, printing, and distribution driven by that house. Finding an agent seemed as important as finding the right babysitter. I needed someone I could trust with my book baby, who would nurture it, love it, and market it with care.

My parents raised me with the mantra: if you worked hard, you would succeed. For me it had been true. In competitive swimming, I practiced twice a day and secured a scholarship enabling me to go to an out of state university. In school I studied and graduated with honors. In my professional life, I secured every job for which I applied. After two years creating a life, I knew someone would want to publish my little boy’s story.

The university provided select authors an opportunity to go to New York and meet with agents of well-known publishing houses. I flew to this experience with high hopes, belief in the quality of my work, and not the faintest idea of how to sell myself. I blogged about Moneyball, the movie in which a GM takes a chance on questionable talent in MLB. I researched editors, rehearsed my synopsis and sell, and made myself sick from the stress. Silly me. For sixty years I depended on the reward-for-hard-work myth. A mandatory paradigm shift blind-sided me and rattled my confidence. Was I a worthy parent, a real writer?

Every agent but one was young enough to be my daughter. Generation shock. I stuttered and mumbled to relative novices at life how the story of a man who killed his wife, lost his son, and lived with the nightmares from a prolonged childhood hospitalization alluded to the story of Job. In ten minutes, I couldn’t make them love my boy-man. In New York I received one request for my full manuscript, one for a partial, and very cordial rejection e-mails. Living with rejection came with a huge BUT. But you haven’t read the whole thing.

Sylvia Plath said “The greatest enemy of creativity is self-doubt.” I taped her words to my computer.

I began the unsolicited submission process. I only sent to agents open to unsolicited material. The others: They didn’t know what they were missing. I started a folder of which agents I submitted to, what I sent, and if I got a response. Hand-written rejections were touted by instructors to be an exceptional compliment. So it’s better to be back-handed in cursive. Most came as form letters. My list of rejections grew. I became more skilled at matching agents with my genre, sharpening my synopsis, and mass producing packets of cover letters, the synopsis, and the first fifty pages of my manuscript. A sort of baby bundle. I took solace knowing the author of The Help received almost sixty rejections. Dr. Seuss garnered over four hundred. I juggled this second job between stretches of twelve hour shifts, strained my marriage, and gained thirty pounds. I thickened my skin to tolerate what felt like bullying and refused to let disappointment keep my child from taking its place in the world.

I never lost faith, but I chose a new approach: self-publishing. With my sixty-third birthday less than a year away, what did I have to lose but my husband, my sanity, and my health?

Self-publishing services amounted to a smorgasbord of choices. Another writer-friend had already self-published. She shared her experience; I followed her lead. I searched company web sites, publishing packages, and, of course, cost. Teasers came with every package. Until I began to shop, I didn’t realize I’d be a decision maker and marketer of my product. A career in professional nursing hardly prepared me for such an undertaking. The very nature of nursing mandates that people seek your service. I never had to sell myself. Even in a high stress area like critical care, all I had to do was appear at the bedside and be a consummate, compassionate, knowledgeable, decision-making professional. A piece of cake. I dedicated myself completely to my work, just as my parents had taught me.

I finally bought a mid-priced package. The company made the process remarkably pain free. From the beginning, contact people helped me format my manuscript to company standards, provided me with thorough editorial comment and recommendations, suggested reasonable time frames for task accomplishments, and updated me frequently about processes out of my hands. But I had the final say with my story, my baby.

I selected my book cover from a small pool of photographs. To my amazement, I found my boy in a symbolic pose of the quest I created. A shadow in the penumbra of a brilliant sun, my protagonist climbed a mountain representing his life of adversity. It was a picture I had found on the internet two years before I finished my first draft. It felt like a new life inside kicking for the first time. I took it as a sign.

A few days after selecting my cover, a package arrived in the mail while I was at work. My husband placed it on a shelf in the foyer. He thought it was just another book I had ordered. On my next day off, a representative from the company called and asked my opinion. “Of what?” I asked. With the phone in one hand, I found the package and opened it. My hands shook when I held the precious thing, not unlike the first time I held my son. I didn’t need to say anything to the rep. My voice spoke the language of joy. I allowed myself a half-scream. The rep laughed. I held my novel in its hard proof copy. Five years of work took tangible shape. All the files of chapters in their original and rewritten forms, all the on-line saved documents, all the time spent molding the world and characters of the novel came together. Despite the beautiful cover, the artistic design of chapter pages, and the presentation of the jacket biography, reality hit when I found the ISBN and Library of Congress numbers. Like a footprint on a birth certificate. I was a real author of a published novel.

I want my novel to be read by those who love the written word. It would be nice if it were a best seller. I have already cast the stars to play my protagonist in the different stages of his life on screen. I have received my invitation to the Oscars for which it received a “Best Screen Adaptation” nomination. In reality I deserve to celebrate my part in two accomplishments: the writing and the publishing. Creation. On this day that is more than enough: I just found out I sold my first book.

 

 

 

 

Why does ED happen

Service versus being a servant

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In forty years of nursing, I fought for respect and autonomy in my profession. I pursued a graduate degree and believed a higher level of education would not only enhance my clinical practice, but would also earn colleague status with doctors wherever I worked. For the most part, this has been true.

In the critical care setting, my specialty, adaptation to change, continuing education, and the ability to make sound clinical decisions has been instrumental in the practice of nursing. A four year degree has become the expected entry level education. Certification in this specialty and the pursuit of a higher degree is becoming more commonplace. Both are encouraged and economically supported by health care institutions. This sounds like nursing is advancing as a profession.

Enter the new ad campaign by a large health care conglomerate that praises the “servant” who cleans up messes and changes the sheets. The ads devalue the educational requirements, both basic and ongoing, the responsibilities assumed, and the commitment to best patient outcomes manifested by consummate professionals. The portrayal of health care providers as servants discomfited me.

As a nurse, I have been a witness to and caregiver in the most deadly epidemic in modern times. I have watched women infiltrate medicine and men infiltrate nursing. I have lived a history in which critical care grew from the MASH units on the front lines of war into the technology driven units in tertiary care facilities. I have watched drugs come and go, so-called best practices be replaced by better practices, and health care become a right. I recognize my profession is one of service. I know that without the patient I am nothing. Without the trust of someone who allows me into his or her life at a most vulnerable time, I cannot do what I am trained to do. But I am not a servant.

Conversely, when I come into the hospital, I want an educated professional familiar with the latest technology, the newest drugs, the best treatments, and the dedication of someone who is prepared for his job. I neither want, nor expect a servant.

I am a professional nurse. I empty trash, clean the floor, clean up excrement, and turnover a room. I have successfully resuscitated a patient before the doctor could arrive. I started an IV when a patient was bleeding to death as the doctor stood over me and told me I had to find a vein. I have made countless decisions in treatment plans, made critical notifications, participate in interdisciplinary collaboration to devise the best plan of care, wept with families, attended funerals, and shared the pain and joy of loss and recovery. I am and will always be in service to my patients. However I am not a servant.

 

Why does ED happen

Where are the cell phones?

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Finally the media is addressing the silence of over two hundred passengers and their cell phones. A CNN expert suggested that the plane was too high for the towers to reach the phones. If that’s true, then why is the FAA considering the issue of allowing use of cell phones in flight? In response to people recalling the plane that went down in Pa. and last minute communications, he stated that those calls were made via “air phones” on the back of the seats that required the caller to swipe a credit card before calling. Really? Wasn’t that plane low enough for cell phones to pick up tower signals?  And yesterday another expert stated the plane was flying low in an attempt to avoid being detected by radar. If just one of the passengers were alive, wouldn’t he have called someone? To the untrained ear, the inconsistency in reporting smacks of cover-up and subverts any confidence in the media. To date, there are far more questions than answers, more doubts than reassurances.

Six tips about Tadalafil

The Way of the World, the End of the 2014 Games

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The Way of the World

For some there is logic in the separation of church and state. In the vicarious excitement I experience when I watch the Olympics, the same logic follows: there should be a separation of politics and sports. I don’t care how these athletes vote (if they live in a place that has voting), who they sleep with, or the ideology of their home country.  It is breathtaking and inspiring to watch athletes who have trained for years, sacrificed in all aspects of their lives, and reduced the measure of all their commitment to one competition and the acquisition of an Olympic medal. As with all things logical, there is a caveat.

I gasp when I witness the flight of skiers and snowboarders. I marvel at their lack of fear. When the skaters spin and leap and lift, I feel dizzy from their speed and height. I love the wild helmets, the beauty of the designer costumes, and the almost alien looking accouterments of the hockey players. Olympic competition represents a celebration of athleticism, work ethic, health, and the global community. Unfortunately at the end of the competition, there are other channels, other conduits. I see and vicariously experience the devastation of Syria, oppression and death in the Ukraine. Appreciation of stellar athletes becomes moot.

As the Olympics close, these thoughts plague me. The press covers the adoption of homeless dogs by an athlete while Syrian refugees starve and wonder where to go for safety. A Canadian journalist, as well as a competitor, complain about judging known to be subjective for years, while citizens in Kiev are judged and shot to death in the street. A team that has practiced with another for two years charges their coach with favoritism, conveniently not apparent until the pair gets into the national spotlight. A snowboarder nurses his failure to win a medal by touring with his band. In the aftermath of this great sporting event, what are we missing? So many questions arise. What will be left behind when all the athletes are gone? What social and environmental detritus will the Olympics of Sochi have generated? Considering all the money, energy, talent, and resources invested into the sports events, is the world a better place? Is there less domestic violence? Is there fresh water for all the people in Africa? Is the nuclear clock any less close to striking the time for Armageddon? The Olympics brings the world together in a microcosm of competition and comradeship on a stage in such isolation that it does little to bring the rest of us to a peaceful co-existence where all become good stewards of the earth and its people.

All complaints and hubris aside, it IS just a sporting event. And it IS time to move on.

 

Why does ED happen

A Matter of Life, Death, and Miracles

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In the weeks since the cardiac arrest and the declaration of death for Jahi McMath and brain death for Marlise Munoz, the media has conducted a discourse with ethicists, an elementary school class, the grieving family, and medical professionals. Maybe I missed it, but nowhere have I heard anyone speak with health care professionals, specifically nurses, assigned to care for either of these patients. In this group of care providers, a continuum of emotions and opinions about what is ethical and humane would abound.

After forty years of nursing, I still find most disturbing the provision of care to those who have no chance of a meaningful recovery. I have cared for a patient who was declared dead. The Harvard criteria for brain death includes: unresponsiveness, apnea (no respiratory effort), absence of movement, no reflexes, a flat electroencephalogram, no central nervous depressants in the body, and a core body temperature greater than 32 degrees. The beside nurse observes more subtleties. There is a vacancy in the eyes, an emptiness, and a lack of recognition of the outer world. Many times I have sensed an absence well before the body declared itself done with this life. No one can verify if the spirit transcends the body, but in my experience it seems that way. And it feels that way. Does this change the type of care I, or any professional, provides? No. I still talk to the person as if I’ll get a response, and I handle the body with the upmost tenderness and respect. This doesn’t change the lack of reciprocity in the human connection between this nurse and the specific patient.

Part of the conundrum with end-of-life decisions stems from the failure to differentiate life from living. In the cases of Ms. McMath and Ms. Munoz, a heartbeat defines life. But when she was alive, Ms. Munoz defined living by her ability to do certain things. She did not want life maintained by mechanical means. Each individual defines living differently. For many people, work and certain activities define who they are. For me, I am a nurse, a fitness nut, a reader, a writer, a wife, a homebody, a thinker. I am not sure which roles I could give up, which things I could stop doing, and still feel life had enough value for me to want to live. For me a heartbeat is not enough of an existence to justify the consumption of finite resources that would better serve another human being. These things I have discussed with my husband, my attorney, and have set down in an Advance Directive.

“What about miracles?” you might ask. Have I seen them? Yes. I still cry when I remember walking down the hall with a patient who suffered a catastrophic brain injury. When I saw his father’s face morph with the recognition it was his son coming down the hall, I knew I had been privy to something divine. I can give you all the scientific rationale for why the boy got better: his youth, perfect timing, a tenacious, committed doctor and team of nurses. I can only speculate about a force present, not prescribed by any medical practice. My question to you is this: “If it truly was a miracle, would it have happened had we done nothing?”

When Jahi McMath’s family prays and talks about God’s miracles, I wonder if they could surrender to their faith, remove all life support, and wait for God’s intervention? At a time when they were most vulnerable, experiencing the worst grief parents can endure, the media spotlighted decisions of the most delicate, private nature. I wonder where the reporters will be six months from now. And I wonder if the family will rethink their decision once they have begun to deal with, not only what they have lost, but also with what they have begun.

You may say: “It’s easy for you to say, you haven’t ever been there.” But then you don’t know me or the kind of nurse I am. I remember the first patient I “lost” on my first Christmas Day on the job. I remember my father, my husband’s son, my neighbor, saying they were ready to go when the quality of their lives became intolerable, all for very different reasons.  My mouth went dry and I felt embarrassed and sad when I read an article in the newspaper about my own challenged grand-daughter who suffered a brain injury at age six weeks. She is seventeen years old, requires total care, and has never uttered a word. She receives tube feedings, never to enjoy the delightful taste of chocolate or grapes or a well-cooked steak. She passes urine, stool, and has gone through adolescence. Someone must attend to all of her bodily functions.  I believe all of us have “been there” at some time and bear the wound of loss deep within us.

Perhaps that is the point of this discussion. These situations are so personal, so private, that people calling the hospital to get information must have a security code. Then how has it come to pass that the law, bureaucrats, and outsiders, who have no knowledge of the people involved, impose decisions on virtual strangers about life and death.

Each person’s definition of living or quality of life determines the path he chooses to its end. I demand this as a sanctified, inviolate right for myself and exclude input from all other external sources. Life, death, and miracles, all very private concerns.

Why does ED happen

Out of the Ice

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            When an ice storm descended on Dallas, it caused power outages, mangled trees, and treacherous roads. Life stood still, a work of dichotomous beauty. The oak in my front yard looked surreal, a psychedelic tree of Lucy-in-the-sky diamonds thanks to the sun and ice. The hackberry from my neighbor’s yard snapped and bowed an above ground cable line into submission to the weather. I dressed for work in stuttering power, raising the garage door when it was on and lighting candles to drink my morning coffee when it flickered off. Aside from the usual inconveniences, the ice gifted me with many things.

            I learned I am resourceful and sentient in a bad situation. I got stuck in an elevator for the first time. It was an outdoor elevator in the parking garage where I work. At least there was a window. But that didn’t diminish my fear of acute claustrophobia and the ultimate humiliation of wetting my pants thanks to the above-mentioned coffee I drank. I could have waved for help. However, being compulsively early to work, I didn’t see too many colleagues at 5:45 a.m. I rarely use my cell phone, much less keep it charged. This day I planned. The phone displayed all its bars. I called security and then my supervisor.

            “It’s me. Cindi. I’m here, but I’m stuck in the elevator.”

            “I thought sure you were calling in. You’d be the second call in.”

            I usually call when I leave home and warn if I don’t show up, I’ve been in an accident.

My supervisor told me to call back if security didn’t show up in five minutes and “they,” meaning “she,” and another nurse, would rescue me. Security arrived in a timely fashion and literally pried the doors open with two sets of hands. The cold already numbed my hands and I realized I didn’t own a warm enough coat for such weather. But I hadn’t panicked or raged or cursed. The mishap gave me a story to tell and a reason to laugh at myself. Something I am not wont to do.

            I also appreciated, for the first time, the blessing of technology. I have blogged about hating cell phones. No more. They have a time and a purpose. If not for my eighty dollar a year track phone, I certainly would have challenged both bladder and circulation to my fingers waiting for someone to come along, look up, and see me blowing the smoke of frozen breath in the elevator. I am even thinking of upgrading to a device on which I can text. God forbid.

            Ironically the snow and ice that blanketed the city in beauty and danger evoked wonderful memories of my father. If living needs a definition, it is he who worked and played and felt more than any man I know. One Christmas dad had tickets to a football game: the then St. Louis Cardinals v. the Pittsburgh Steelers. He couldn’t get anyone to go with him as cold and snow were predicted. Dad bargained. If I went with him to the game, we would go buy the Christmas tree afterwards. Of course I agreed. I was a little girl who knew nothing about football, who couldn’t have cared less, but I had my mental eye on picking a tree out with my dad.

Imagine decades ago. Football played on a grassy field beneath a gray sky of bundled clouds waiting to dump snow on the men chasing a pigskin ball. A tow-headed girl holding the rough, mitt-sized hand extended from her father’s leather coat. The air so cold it blew up into my coat and down my leggings. I sat in the shelter of dad’s arm. He opened his coat and squeezed me next to him. Heavy, wet flakes plopped on the leather, melted, and traced paths down his arms. I watched the snow, wiggled because the cold made me have to pee, and I watched dad watch the men on the field. He asked me if any of the players stood out? A silly question for a little girl whose main concern was the location of the nearest bathroom. But I pointed at one man in an opponent’s uniform. My choice pleased dad. “Big Daddy” Lipscomb. Dad identified the player and mumbled something about the man having trouble with drugs. I had no idea what he meant.

True to his word, we bought the tree after the game.

            I also remembered dad, the Good Samaritan. One December night returning from dinner at a friend’s house, we got stuck on a steep snowy hill. Although we had chains on the tires that chinked the ice to announce our progress, they did not provide enough traction to get us up and over the hill. Several cars stopped in a line down the hill. Other cars began to line up behind us. Dad kept the car running. The headlights allowed us to watch him disappear into a swirl of flakes. I only knew he was helping, but didn’t realize until mom rolled the window down and dad stuck a flushed, sweaty face in. “Just a few more. Then we’ll go.”

            As with any memory, time distorts truth and intensity. But that night, I sensed a giving greatness in the man who was my father. I knew why my mother loved him. In a snowstorm, I felt safe and secure in the penumbra of my parents.

            So on a day when it is almost seventy degrees, I thank the storm. I forsook anxiety and anger and chose rational thinking to problem solve. Verizon upgraded our battery box which blew in the cold. Time Warner upgraded our HDTV when the “cable guy” rehung the drooping cable. And I refreshed memories of my family, my father that affirm the richness of what I usually see as a most ordinary life.

 

           

Why does ED happen

Steubenville and Feminism

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I love The Walking Dead. Once I get past the gore, I see it mirror the brutality of a modern world. A world, where in one country, a woman is raped every 20 minutes.

Amidst the rehash of and a promise to appeal the Steubenville rape trial verdict, I ask myself “Where is the outrage?” What, in our culture, has allowed us to generate people who have so little regard for their fellow human beings? Do the cavalier personas exhibited by impaired teen-agers violating a passive victim illustrate a sort of zombie apocalypse? Living, cognitive humans treated another person like a thing. Without empathy. Without sympathy. Without compassion. Is this type of behavior symptomatic of a society infected with a pandemic of maleficence?

I ask “Where are the women?” Where are the young girls of the victim’s social group? By their lack of action, they behaved with complicity. Was there no one to stand up for the victim? For their futures, they should scream for real justice and watch in shock as verdicts and light sentences define their value as assessed by this tragedy set in Anytown, USA.

 What happened to feminism? Yes, dated, outrageous, but angry, bra-burning feminism! Forty years ago, young women associated that term with choices, not just about birth control and abortion, but careers, marriage, buying a home, living independently, competing, achieving, and fighting back. I remember a nurse friend of mine helping another nurse, abused by her husband, move out of her home in the middle of the night. Women supporting women. Is feminism dormant? Or is it so changed that its modern focus on climbing the corporate ladder and the economic indicators of success has marginalized the common woman. She comes from a modest background, hopes to get to college, graduates with a $40,000 college debt. She aspires to live alone, buy a car, and have a little left over. She is the one with the right to jog alone at night without being touched and without being labeled as “asking for it.”

Where were the parents?  In the late sixties, I hosted a party planned strategically on a night when I knew my parents would be away. We snuck a few tastes of liquor, watering it down so the level in the bottle didn’t drop. I considered myself defiant and daring. I didn’t realize how well my mother knew me. She mastered the skill of paying attention. Two hours after my friends arrived, my parents did as well. Unexpectedly. Something I had done, something I said, too many phone calls by a person who usually talked to just one or two friends, alerted Mom’s radar.

 Our children are blitzed by movies and television with adult content at a time when parents seem less and less present as parents. When did it become all right to have hormone-enraged teen-agers party without supervision?

In The Walking Dead, a human knows where he stands when he is surrounded by “biters” or “walkers.” They eat. They survive. It is among the humans that each character must watch his back. Welcome to the teen culture of Steubenville.

 

Why does ED happen

Who should be driving this bus?

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On a Wednesday several years ago, I underwent a Moh’s procedure for a basal cell carcinoma along the crease on the side of my nose. I went in to my dermatologist’s office expecting the result to be a spot the size of a standard pencil eraser head. After the procedure, the doctor’s assistant packed my nose with a mound of gauze, instructed me not to take it off for twenty four hours, and scheduled me to meet with a plastic surgeon on Friday. Being a nurse, I had to see what required such a dressing. I pulled back the tape. My husband had no idea what I was doing. I screamed and started to cry. He ran into the bathroom fearing something horrible had happened. It had. I looked into the mirror and found an excavation that covered two-thirds of one side of my nose. It leaked serous red drainage and I imagined one good sneeze would blow half my nose wide open.  I re-taped the bandage and cried some more. Nothing and no one prepared me for the end result of this “simple” office procedure.

 

I met with the plastic surgeon on Friday. He didn’t have a cosmetic practice. He limited his work to reconstructive surgery for cancer patients. When he removed my dressing, he didn’t flinch, but he did schedule me for emergency surgery on Saturday. I went through my pre-op work up and went home. Let me say in all honesty, I can’t sit still. I expend nervous energy through motion, the treadmill, the elliptical machine, or the recumbent bike. Thoughts of equipment acquired MRSA paralyzed me and locked me inside my house climbing the walls.

 

Then I received a call from the plastic surgeon’s office. My insurance company would not authorize my procedure. I felt the same devastation I experienced the first time I saw the hole in my nose. The office manager gave me a contact number at the insurance company and suggested I call and talk to the nurse. I live in CST. The call went to a location in EST. I spoke to a nurse at the end of her day. She repeated the denial with scripted kindness. “I want to know who else I can speak to. You. Have. Not. Seen. This.” My voice turned shrill. I cried. She told me a doctor made the final decision. Out of pity, or perhaps because I was a nurse, the voice at the end of the phone gave me the number of the physician deciding the fate of my face.

 

CST-4 p.m. EST-5 p.m. An M.D. ready for the week-end. I explained my situation, explained the high-risk-of-splash area in which I worked, a CVICU, explained how my level of physical activity correlated with my quality of life.

 

“We’re not approving your procedure.”

 

“You haven’t even seen it. How can you decide it when you haven’t even seen it?” He was trained to respond, not react. I hung up the phone, mouth dry, my reservoir for tears empty.

 

My husband took pictures from several angles. I wrote an appeal. We decided if we had to we would pay for the emergency surgery.

 

Jump forward to 2013. Last week-end, a general surgeon I worked with for over thirty years vented to me about the state of health care. A family member, who seemed to think she earned her medical degree trolling the Internet, challenged his prescription of Reglan to prevent her mother from developing a sluggish bowel. She listed her concerns based on whatever site she had visited. The doctor calmly discussed the benefits of avoiding a bowel obstruction versus the risk of the drug side effects. “If she develops them, we can stop the drug.”

 

He went on to tell me how recently he found a printed form on one of his post-op patient’s charts asking him to justify his order for I & O (intake and output). I & O is a basic, easy to access tool for fluid management. His patient fell into the high risk group of geriatrics, with marginal renal function, who had an abdominal procedure which is notorious for causing significant fluid shifts. The rationale for measuring I & O is common sense. Yet someone, somewhere asked this experienced, proficient surgeon to explain his order.

 

Both of these scenarios raise the question: Who should be driving this bus? When it comes to pre-approval of necessary procedures, can and should these decisions be made without face-to-face contact of some sort? Every case is different. Emergency plastic surgery of the nose is not a cosmetic elective procedure. A career, a healthy lifestyle, the ability to be up close and personal doing a job without offending a client depends on it. My procedure was reconstructive surgery for cancer. Without it I would never have been able to approach a patient again. Dr. 5 p.m. EST didn’t care about that. Do lay people not realize the Internet provides information about care practices in general without consideration of the individual? In the health care system, knowledge is power, but it is not a license to micro-manage and out-guess licensed health care providers. Does asking a practitioner to justify basic orders improve patient care and alter outcomes? I would not want a cab driver to fly a plane on which I was a passenger. I would not want a quarterback to perform my open heart surgery? In the changing world of health care, decision making needs to rest with bedside health care providers, not insurers, Internet educated family members, and not a hollow voice on the end of a phone.

Why does ED happen

Katy Butler-Teaching us all about life

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The last time I cried reading a book, the imagery and exposition from Barbara Kingsolver’s The Lacuna gave birth to those tears. This time the intricate weave of fact, emotion, and the intimate details of the death of Katy Butler’s father and her mother’s journey as a caretaker hit me with such force I wept.

 Knocking on Heaven’s Door resonated with both my professional and personal soul. As a nurse celebrating my fortieth year of bedside practice, I doubted a “non-medical” person could show me much I hadn’t already seen. But when Ms. Butler shared her poignant memory of the tender touch rendered by the technician who shaved her father, she affirmed my practice of shaving men daily. From that point in the book, I knew she understood my point of view as a seasoned practitioner.

Today nursing students get out of school having never shaved a patient. I have written stories about the intimacy of this daily ritual and have had readers comment that they twisted their faces to accommodate my blade as they read my description of men responding to the comfort of this simple ablution. This minor deficiency in nursing student experience is symbolic of the health care behemoth in which technology increases exponentially, while the ethics of human dignity founder.

Thanks to scientific advancements, medicine has the capacity to do more and more and more. When I started my first job in critical care, there were no arterial lines, no pulmonary artery catheters, and no one knew to use positive end expiratory pressure on a ventilator. Today these technologies are commonplace. Just like children today grow up with computer technology, I grew as a nurse and embraced change every year I practiced. I don’t know when I shifted from a young upstart, hungry to understand and implement every new thing, to someone who remembered the calling of my profession.  In my quest for knowledge and expertise, I placed the people in my care second on my list of priorities. Ms. Butler provided me with the insight to why and how this happened. She illustrated how this approach to health care devours a family. And she created an impetus for rethinking the goals and practice of health care delivery.

After her father’s first stroke, Ms. Butler and her mother embarked on a difficult, tumultuous course to provide the best care for him. It seemed after every decision, another challenge requiring another decision appeared. For every step forward, her father took two steps back. In the process, Ms. Butler’s fiercely independent mother, a loving wife, experienced a loss of life of her own. In an effort to keep Mr. Butler home and maximize his recovery, Mrs. Butler subsumed her needs. An act of love, no doubt. But the decisions posed a threat to her physical and emotional survival.

Ms. Butler’s description of the last years of her father’s life can be summed up succinctly. Survival doesn’t mean recovery. She raises the question that is “the elephant in the room” in any family discussion about health care decisions. For every individual the answer is different. Just as someone made choices about how he lived, should he not direct how he dies?

The availability and cost of advanced medical technology act to complicate the factors in the decision making process. Ms. Butler describes the irony of Medicare’s willingness to pay for a costly pacemaker while denying the cost of a “truss” to help provide comfort to her father until he could be cleared for a bilateral inguinal hernia repair.

How did our culture get to a place where modern “lifesaving” allows a person to know “the suffering of life without its joys, and the helplessness of death without its peace”?

The diminished value attributed to the family practitioner is a starting point. I remember Dr. Barrow, our family doctor. He treated my anemia when my blood count dropped so low I fainted after a penicillin shot. He addressed my teen-aged depression. He made house calls. He knew my family and the context of our lives. With the advent of multiple specialists and an ever-changing reimbursement structure, family practitioners are pressed for time if their offices are to survive. Reimbursement is driven by time, not talking, treatment, not affirmation of the individual as a bio-psycho-social being where three spheres interact to define what health is for that person.

The next problem, simply put, is our passion for technology leaves little room for compassion and planning. In the urgency to fix a problem, an intervention is chosen and implemented with no time for assess the far reaching effects of one procedure. The team members where I work rarely get to see patients on their way home. The question of how a family will function after a patient is discharged hardly is a consideration when recovering a patient from open heart surgery or inducing hypothermia after a cardiac arrest. Real time crises diminish the truly fundamental issue of what will happen after discharge. Anticipation and planning for this must begin the day of admission.

Every hospital uses social workers who manage an amazing portfolio of resources. Care must be planned around the family as a unit, not just the patient as an individual. Family harmony versus dysfunction. Children who are retired to care for their parents versus those who still work. Parents who demand their independence versus those incapable of demanding anything. There is no fool proof recipe to cover all situations. Successful transition of a patient from the hospital to the community is a tabula rasa, a work of art attempting to recreate life after a health crisis.

For many, differentiating between life and living raises the ultimate conundrum. Is living being warehoused and immobile in bed, in a nursing home. As a person with multiple sclerosis, I have spent many lonely, waking hours trying to find the answer. Believing I have it, I have an Advance Directive. For me living means reading, writing, working out, and talking politics, thanking patients for letting me share in the journeys of their lives, waking in my bed, next to the familiar curves and aroma of my husband. Living is not just a heartbeat or a respiration.

Every day I go to work, I confront the problems and issues in Knocking on Heaven’s Door. Because I am a nurse, I am biased, but not jaded, when I espouse my solutions. The power, truth, and insight of Ms. Butler’s book make it must reading for health care professionals, anyone with a frail parent or sick relative, and anyone critical of our current health care system. But reader beware: there will be tears.

 

 

 

 

 

 

Why does ED happen

I didn’t know it was bullying

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I witnessed bullying in elementary school. A boy named Peter was the target.  By changing one letter of his last name, we spoke of him using a derogatory nickname. I remember him as a quiet boy, bigger than most, with eyes cool and blue like a pristine arctic sky. I envision khaki pants and plaid shirts, never tucked in, always a bit sloppy. The same outfit day after day.  His hair declared independence from combing by falling in patterns directed by several cowlicks. He spoke softly. In retrospect I wonder if he feared being heard.

I don’t remember who came up with the idea. But someone suggested we put a thumbtack on Peter’s desk seat. After lunch, a group returned early to the classroom and rearranged the bulletin board, liberating a tack from a map, or a drawing, or a vocabulary word. I watched it take position in the center of the polished wooden seat. Metal frames housed fine grained wood with a sloping contour to accommodate the curve of the buttocks. Back then it never occurred to me it might hurt him. His trousers had pockets of thick material over each butt cheek, American made, sturdy, no reason to think something so small would penetrate two layers of fabric.

Students filed into class. Those of us in on the secret made eye contact then faced front. Peter straggled in. Did I smirk or cover my mouth in glee or with relief that it was Peter, not I, about to experience an insidious humiliation? I can’t remember. I suspect I watched with carnivore anticipation until the horror of reality hit. Peter went to sit down knee first. He bent his leg, put his knee on the seat, and curled the leg around until he sat half-Indian style at his desk. No one remembered this habit in the rush to pull off this prank.

If he screamed, I blocked the memory of the sound. I assume the teacher reacted with anger and compassion. I dared not look around at any of my friends.

Peter didn’t jump off a silo to his death. Perhaps he knew “What fools these mortals be!”

But today I read the news with sorrow. A pall of hopelessness for our young people taints the present and future. How have we become a culture where who someone dates in their early teen years result in deadly consequences? Who decides what is a socially acceptable weight, the best outfit, or the prettiest hair? A current phone commercial depicts head butting and deliberate violence by adults in their quest for the best pictures on their phones. What are we teaching our children about the importance of acquiring things and pushing ahead? Who teaches our children the value of being different, having a clearly defined identity, and respect for others’ choices? Who is teaching the basics of right and wrong? How can parents become more vigilant, more sensitive to the fact that what a child believes about him or herself affects behavior and socialization significantly more than what the parents know to be true? It frightens me to observe the disdain some of our young people have for their fellow human beings and for life itself.

I have always felt different. In high school I was athletic before it was chic. While others practiced with the drill team, I went to swimming practice, before school, after school, week-ends. I didn’t have much time to be social. The chemicals in the pool turned my blonde hair green. Lap after lap added two inches to my chest circumference. I envied the curves and bumps of voluptuous friends and compared my upside down triangular body, broad shoulders, flat chest, boyish hips, and flat feet, to them. I felt short changed. I’d never be a cheerleader or a prom queen. I did get to travel every week-end during the swimming season. I met people from around the country and enjoyed a comradeship with my teammates.

At home I enjoyed the freedom of aloneness. I spent time reading and imagining. When I was a child, it was safe to play outside alone. I rode my bike and walked along the railroad track behind our house. I never felt lonely, just solitary.

I don’t know what empowered me not to be destroyed by the cruelty of others. Did people make fun of me because of my androgynous build? Sure. Did I get tired of people wanting to touch my green hair? Yup. Did I gape in shock when an older girl in the shower room slapped me because of my smart, but in her case, deadly accurate mouth? Of course. But I never felt the need to apologize for who I was or to remove myself from the equation known as life. I don’t know who to thank for that. I credit competitive sports and parents who fully supported my participation in them. I also feel my inner life taught me the peace that comes with singularity.

Back to the case of my classmate Peter. Silence and inaction made me an accomplice. Shame and guilt ate away at a childhood innocence I would have preferred to savor a little longer.  In elementary school in the 1960s, we called it a prank. In reality we committed a cruel and vicious act that injured someone physically as well as mentally. I witnessed bullying in elementary school. I will never forget the role I played. To be a voyeur is as harmful as being a proactive perpetrator. I am 62 years old. I hope Peter has forgiven me for my part in the travesty. I promise to never act as a passive witness again.

 

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