I retired on September 17, 2004. On October 7th, my husband, Ernie, and I left for Italy. We joined a tour with another couple, long time friends, exploring Palermo, Rome, Naples and Venice. The final week we rented a car and a villa in Tuscany. A vacation I had dreamed about for years.
Casa Pavon in Castigliore d’Orcia
The villa was once a monastery. Large window in the living room looks out on the valley
Memories:
Enjoying breakfast of Italian bread with butter and orange marmalade, tea and fresh pears (when we didn’t visit the café for cappuccino and pastry)
Taking day trips to Siena, Assisi, Montalcino, and near-by villages
Stopping spontaneously at the roadside churches with varied facades and weathered pews
Dining in the one restaurant in the village where we savored ribollita soup and wild boar
Drinking bottles of fabulous Italian wine
Watching the green hills and valleys from the living room window while sipping Limoncello in the late afternoon
Calling family back in the States from the public phone in the café while groups of Italian men smoked and played cards near-by, drowning out our conversations
Watching the Italian laborers nearby setting up a hot plate to boil water for their spaghetti lunch
Cooking dinner with meats, fish, vegetables and bread from the local markets
Loving the slow-paced life, leisurely dinners and magnificent sunsets
Most of all these memories have, over the years, kept my husband and me connected to our friends who journeyed Italy along with us.
I’ve signed onto The Blogging from A to Z April Challenge 2021.
The challenge is to blog the whole alphabet in April and write at least 100 words on a topic that corresponds to the letter of the day.
Every day, excluding Sundays, I’m blogging about Places I Have Been. The last post will be on Friday, April 30 when I finally focus on the letter Z.
H: Hospitals
I counted up all the hospitals I have worked in during the 40-plus years I have been a nurse. The total is 18. These are the hospitals where I was officially employed. That is, I attended an orientation, worked forty hours a week and received a regular paycheck.
It doesn’t include the hospitals I visited as a nursing instructor when I had to review patient charts in order to choose appropriate student assignments.
It doesn’t include the hospitals that I visited to enroll a patient in a home care program.
It doesn’t include the community hospitals that I visited to evaluate the care that veterans received (I worked for the VA at the time).
So, I have been in many hospitals. Hospitals prompt a plethora of memories.
The newer hospitals don’t stir up remembrances. They are disguised as hotels. Sterile. I suppose that’s desirable in reassuring patients and visitors that germs are kept in check. The older hospitals, to me, expose the nursing effort of caring for patients at a critical time in their lives—sometimes with success and sometimes with failure.
I visited an older hospital in 2001, right before I retired, to enroll a patient in a hospice program. The hospital was a small community facility that had little renovation over the years.
I needed to copy a form. The xerox machine was in the basement. I hiked down the stairway. On opening the door, humidity from steam heat, warm ovens in the kitchen and the noise of the washers and dryers immediately assaulted me.
This was a functional basement of hospitals of long ago.
Jolted by the sensory stimulus surrounding me, I trekked along the long corridor feeling as if I was twenty years old, wearing a white uniform, spotless white shoes and starched nursing cap held with bobby pins on the top of my head. My life in nursing, unlived, still ahead of me.
Lost in nostalgia, I almost forgot to look for the Xerox machine.
I’ve signed onto The Blogging from A to Z April Challenge 2021.
The challenge is to blog the whole alphabet in April and write at least 100 words on a topic that corresponds to the letter of the day.
Every day, excluding Sundays, I’m blogging about Places I Have Been. The last post will be on Friday, April 30 when I finally focus on the letter Z.
B: Basement
My best friend, Carol, lived with her family in a basement apartment. Her parents were custodians of the four-story residential building near the corner of Summit Avenue and Mercer Street in Jersey City. I lived down the block.
When we were in grammar school and I called on her to play, I had to walk down the three brick steps next to the apartment building. Facing a heavy door, I rang the bell. Carol would come to flip the locks and let me in. If Carol had to get ready, I usually told her I’d rather wait outside. Walking through the dark and damp basement to get to her apartment frightened me. I expected a stranger might be hiding in the shadowy corners of the basement waiting for me to walk by—and pounce!
When I was older, I followed after Carol as she did her chores in the basement. Using the Dumbwaiters, Carol pulled at the ropes raising the box to reach each apartment. She rang a bell to alert the resident to place her garbage in the box. During this encounter, Carol and the tenant would exchange pleasantries, their voices echoing up and down the shaft. In the winter, Carol shoveled coal into the furnace. Throughout the year, she swept the basement floor regularly under the lone light bulbs hanging from the ceiling.
In my teens, I spent more time visiting with Carol and her family (mother, father and older sister) in their cozy two-bedroom apartment. It was easy to forget that outside the front door, the basement stood in darkness.
When Carol began dating, the slog from the front door to Carol’s apartment didn’t deter her suitors.
After Carol and her sister married, their parents bought a single family home in southern New Jersey—for cash.
The story that I wrote almost thirty years ago was chosen as a finalist from 200 submissions to Carolina Woman Writing Contest. Debra Simon, editor and publisher of Carolina Woman magazine, decided that this year she would include a list of finalists. Lucky for me.
Thank you, Debra Simon and Carolina Woman magazine, for selecting my story to be included in the list of finalists. I am honored.
Unfortunately, as of May 1, the print magazine was suspended due to COVID-19. You can read the prizewinning submissions on the Carolina Woman web site but there is only a list of the finalists by name and title of the work.
I have printed a copy of my story below.
THE CAT
I lounge on the back deck of my new home sipping a glass of Chardonnay. The October sun is still warm here in the South. No one is hassling me about drinking a good wine with taco chips. I’m not being hassled because I’m alone.
But I’m not really alone. The cat is here. She has wandered down to the brook and is sitting on her furry, black haunches staring at the bubbling stream. This commands her full attention. She doesn’t know brooks. Brooks weren’t common in Chicago where she lived all eleven years of her life. She knows alleys, cement sidewalks and chain link fences.
She was not totally citified, however. She ran around with a family of possums who ravaged the garbage cans in the alley behind our house and made their home under the steps of our old wooden porch. In the evenings’ blue haze, I would see the cat’s silhouette surrounded by pairs of red slits that darted away when I threw open the kitchen window to call her inside.
She hasn’t, as yet, met the beaver that lives in the brook since this is her second exploration outside. Like me, she has left familiar places and faces behind. She’s trying to make sense of this terrain with its newness and unpredictability.
Yesterday, on her first venture outside, I watched like an anxious mother while she delicately descended the steps off the back deck that lead to the grassy slope. Suddenly three, shiny black crows perched in the tulip trees began to make menacing, croaking calls. The crows swooped over the cat, one after the other. She crouched low and crept back to the deck, up the stairs and through the French doors I had opened.
No sooner had I shut the doors behind her, saving her life I am sure, she began to meow to go back outside. No way, I thought. I no longer need to experience that kind of the excitement: dealing with daily disasters, stretching my imagination while awaiting unmentionable accidents. Those worries I abandoned when my children, now grown and free spirited, decided to stay in Chicago when I moved to another state.
The cat rolls happily in the dry dirt by the brook sending up dust clouds. Back in Chicago, she often welcomed me from work by rolling about on the concrete path leading to the back door of our house. I would bend down and rub her soft belly until my work worries dissolved.
I wonder if the cat misses her familiar haunts: the chain link fence she scaled, the alley she explored, or the familiar wooden porch with its family of possums living underneath the steps. Does she miss the variety of laps she could choose to sit on, or the warm hands that reached down to scrub her black and white head, or the beds she shared? Does she miss her life companions, who like her, are testing their freedom?
The cat is gone from the side of the brook. I stay seated. I remind myself that I no longer need to be the mother-worrier.
I go back to my book and try to concentrate. Time passes. The wine and the taco chips are gone. The sun drops behind the tulip trees casting long shadows across the deck. I feel a warm, furry body rubbing against my leg.
I almost forgot about Dennis. That’s what Carol Novembre thinks his name was. Carol and I worked together in the early 60s at Pollack Hospital in Jersey City. It was a county-run hospital. Dennis was head of maintenance. I learned a lot from him about the political corruption that went on behind the scenes. Not that I had any doubts about the kickbacks and abuse of power. I had seen the cases of liquor at the loading docks that were to be delivered to the administration suite (aka “the penthouse”). One time when I answered the phone on our nursing unit, a voice at the other end reminded me that my “donation” of five dollars was due in order to keep my job. When I identified myself as a nurse, the male voice apologized profusely.
Dennis, a tall, lanky guy with a pocked marked face and disheveled clothes, made rounds in the hospital when he wasn’t off-site, overseeing the unofficial work of prisoners. He would bus the prisoners from the county jail to work on the administrator’s suburban house—building a fence, painting the siding, tending to the gardens in the summer. He seemed especially fond of the nurses. If he learned one of us had missed lunch, he would run down to the kitchen and reappear with a bacon sandwich.
Reminiscing about Dennis was only one of the memories that resurfaced as I spoke to Carol last week. I had asked her if I could write about the fact that she was one of the first dialysis nurses in the country. I worry that as nurses age and die off, stories of nursing history will be lost. My stories included.
You will read more about Carol Novembre in a future post. In the meantime, here is a story I had published about one of the patients I cared for while I worked at Pollack Hospital in the mid-60s.
Pollak Hospital
CLOSING THE DOOR
I screwed off the cap of the Black and White Scotch bottle and I carefully measured out sixty milliliters, two ounces, into a medicine glass. The alcohol fumes gagged me every time. Then I grabbed a pack of Lucky Strikes from the carton on the shelf next to an aspirin bottle. Cigarettes and Scotch balanced precariously on a small tray. I locked the door to the tiny medication room and went in search of Charlie Hobbs.
The tobacco smoke clouded the air in the patients’ lounge. The drab room was empty except for a middle-aged man in blue pajamas staring at pieces of a jigsaw puzzle on the card table in front of him. A cigarette clung to his lower lip.
At times, I imagined myself the airline stewardess I had always wanted to be. Coffee, tea, or me? This day I was a Playboy Bunny as I bent at the knees, stretching to place the drink in front of Charlie, while his blue eyes riveted on my imagined cleavage. But Charlie’s eyes fixed solely on the amber liquid. Not once in the past four weeks had he acknowledged me, the young nurse in a starched white uniform with thick support hose and practical shoes. An unlikely dispenser of booze and butts.
Charlie had arrived with no suitcase, only the clothes he wore. The faded blue hospital pajamas and robe comprised his daily wardrobe. One of the other nurses had donated slippers. I looked down at the top of Charlie’s wild red hair. “I got to get me another puzzle,” Charlie said without looking up at me. “This here one is almost done.” He snuffed the cigarette butt into an overflowing ashtray and reached for the drink. I was glad Charlie had decided to shower that morning or else his pungent body odor would have added to the foul air.
Charlie shuffled the jigsaw pieces about by day, and watched television by night, all a maneuver, I thought, to keep human interaction at bay. No one ever visited him. Did he even have a home to go back to?
Dr. Clark’s research money supported Charlie’s hospital stay. Dr. Clark needed recruits who would agree to have a cardiac catheterization in order to see the effects, if any, that alcohol had on their hearts. Cardiac catheterization was the latest tool of the sixties. It measured heart function but carried the risk of injury and even death.
Dr. Clark scoured the downtown bars searching for men who drank excessively. On a warm summer night about a month ago, Dr. Clark had gotten lucky. Charlie seized the carrot: a roof over his head, three squares a day, free liquor and cigarettes. He agreed to live on the third floor of the county hospital for four weeks and then undergo a cardiac catheterization.
I carried the empty medicine glass on the tray back to the nursing station. How could Charlie drink alcohol at nine in the morning? Or all day long, for that matter? What would make a man so desperate that he would consent to have a procedure that might kill him?
Even though I didn’t particularly like Charlie, there were times as I placed the Scotch in front of him that I wanted to nudge him and jerk my head towards the exit sign down the hallway. Get out, Charlie. The catheterization isn’t worth all the free alcohol and cigarettes that Dr. Clark’s giving you. Get out. Now. But I didn’t have the audacity to undermine Dr. Clark’s research, no matter how conflicted I felt.
At twenty-three and a nurse for just two years, I vacillated between professionalism and irreverence. I struggled with knowing when to step back and when to dig deeper into my patients’ psyche. How to be empathic and not sympathetic. How to balance cool detachment with overbearing involvement. Charlie needed someone on his side to help him understand what he was getting into.
Nellie Mineo interrupted my thoughts as she waved to me from the doorway of her husband’s room. She looked like the Italian housewife that she was: salt and pepper hair piled in a bun on the top of her head. A well-worn cardigan sweater covered the simple cotton dress she wore. Behind her thin frame I could just make out her husband’s outline under the starched white sheets.
The Mineo’s had known the chances weren’t in their favor when they first met with Dr. Clark to discuss replacing Joe’s diseased heart valve with an artificial one. At that time Joe was so short of breath that he could hardly talk, much less continue to work in the family grocery store. Joe had been my patient during the week Dr. Clark evaluated him for surgery. The Mineo’s large, gregarious family resembled my own extended Italian family. Joe could’ve been my Uncle Tony with olive skin, dark eyes and soft smile.
An artificial valve, which clicked audibly, replaced Joe’s faulty one. I had worked overtime on the surgical unit as Joe’s private nurse the first night after surgery. At first things looked great, but soon Joe developed a cough, and then his legs swelled. Diuretics only worked for a while, and the antibiotics failed to prevent the infection from ravaging his body. Although the valve was being rejected, it continued to click on.
Joe had the first room near the nursing station. The floor was dedicated to research and held only fifteen patients. The patients stayed for a long time or returned frequently for evaluation. Not surprisingly a strong bond developed between the professional staff and the patients and their family.
Joe’s family and friends usually came and went at all hours, but this day only Nellie stood guard. When I ambled towards her, she grabbed my hand. “He looks worse,” she said, rubbing my hand in absent-minded distraction. “Promise me you’ll stop in before you go off duty today.”
Nellie and I both knew that there would be no miracle for Joe. His once muscular body shriveled into sagging skin covering a bony frame. He didn’t open his eyes to Nellie’s voice. Even a sharp pinch to his face couldn’t get a reaction. “Stop and see me before you go off duty,” Nellie repeated. I nodded. Only then did she loosen her grip on my hand.
At the end of the day, as I flung my coat over my arm, I heard a racket from the patients’ lounge. Charlie stomped past me, head down and fists clenched. “I’m outta here.”
“What happened?” I asked the nurse who jogged after Charlie.
“Charlie kicked over the card table. No reason I could see for this.” She shrugged her shoulders and continued down the hall.
Nellie watched the commotion from the other side of the hall. I walked towards her. She pulled me into her husband’s room, grabbed my coat and purse and held them tight against her body. She stared at me for a long while without speaking. From behind her I could hear Joe’s wet bubbly breaths. Even in my short stint as a nurse I recognized the rancid smell of impending death.
Nellie moved her face closer to mine and whispered, “He’s dying.” She caught a sob and swallowed hard. “I don’t want him resuscitated. Stay with us, please stay with us. Don’t let them resuscitate him. Please don’t.” She wept quietly, clutching my coat and purse closer to her body.
What was I to do? I had never faced this dilemma before. I knew Nellie had witnessed plenty of resuscitation attempts as she lingered outside her husband’s hospital room day after day. Cardiopulmonary resuscitation was so new that all patients were candidates. At the first moment a patient stopped breathing, we leaped into action. We flung him to the floor and straddled him. With the side of our hand we walloped the sternum to get the heart started, then breathed frantically into his mouth. Pumped on his chest. We worked until we were exhausted. In most cases the patient died anyway with fractured ribs and a lacerated liver. Nellie didn’t want this for Joe.
Thoughts flew in and out of my mind. If the staff saw Joe turning blue, they wouldn’t give a second thought to trying to revive him. A resuscitation attempt might bring Joe “back to life,” but only briefly. Then there would be more pain and agony before his heart gave out and he died—again.
What would I want for Uncle Tony? A quiet death, or zealots in white coats beating on his chest? What should I do? Was there a choice? I looked at Nellie, her dark eyes pleading.
I heard Charlie’s voice from down the hall spewing curses. Perfect timing. Charlie would leave the hospital AMA—against medical advice—right before his scheduled catheterization. I hoped whatever he was up to would distract the staff just long enough for Joe to die.
My heartbeats kicked up a notch as I reached over and slowly shut the door. Nellie’s hold on my coat and purse relaxed and they slid to the floor. Wordlessly, she settled down in the chair next to Joe’s bed, lifted his limp hand into her lap and clutched it. I commandeered the chair by the door: the sentry blocking the enemy from entering.
I sat knotted tight while Joe’s breaths became more erratic. The lapses between his gasps for air stretched farther apart. Just when I thought he had quit breathing, he gulped for air.
Finally, the mechanical valve stopped clicking and the room became silent. I walked to the bed and placed my hand over Joe’s clammy hospital gown. I didn’t feel any movement in his chest. I didn’t feel a heartbeat. Joe’s open eyes stared at nothing. I stood there for a long minute before I smoothed down his lids.
Nellie gripped her husband’s hand to her breast and sobbed softly.
I stood over her, my hand lightly on her shoulder. While I felt relief that Joe died peacefully with his wife by his side, each footfall by the door made my heart flip. What if one of the staff would walk in and find I had made a decision that wasn’t mine to make. “ I really need to leave, Nellie,” I whispered, taking Joe’s lifeless hand from hers and placing it by his side.
Tears slid down Nellie’s cheeks. She rose from the chair and embraced me. “Thank you,” she said, her voice cracking. I felt Nellie’s tears soaking into my shoulder as my own tears fell. Then Nellie pulled away and sat back down next to Joe, taking his hand again into her lap. I wiped the moisture off my face with the back of my hand, grabbed my things from the floor, cracked open the door, and glanced up and down the hallway. No one was around. Retrieving my coat and purse, I walked leisurely toward the exit leaving Nellie waiting for the evening nurse to discover Joe dead in the bed.
The floor was unusually quiet. The medication door was ajar in the nursing station. I had no intention of poking my head inside and saying so long to the evening nurse. Just a few more steps and I would be in the clear. As I turned the corner of the white tiled hallway, Charlie Hobbs’ presence blocked me. “Hi,” he said as if we were old friends. “I’m leaving. Can ya spare a buck for bus fare?”
Charlie had on a bright green jacket I was sure wasn’t his. Noticing my eyes on the jacket, he said, “Borrowed this from the guy in the next room. I’ll return it.” I nodded even though I knew the coat would never make it back to its owner. He shifted his feet nervously as he waited for my answer.
I wasn’t anxious to break any more rules but I was glad he was leaving. Why even try to entice him to stay? That would be hypocritical. I reached into my purse guessing he would head for the nearest tavern rather than the bus stop.
“Thanks,” he mumbled. Shoving the dollar bill into the pocket of the purloined jacket, he turned abruptly. In two long strides he disappeared though the doorway under the red exit sign and raced down the steps. I followed. A cold wind chilled my stocking legs as Charlie opened the door at the bottom of the stairs to the outside world. In his haste to escape he let the heavy door slam shut behind him.
I pushed the heavy door open with my shoulder. Unlike Charlie, I had no desire to announce my departure from the hospital by slamming the door. Leaving my covert actions behind me, I griped the handle with both hands and eased it closed.
The Closing the Door was a winner of the TulipTree’s Stories that Needto be Told Contest and is featured in their 2016 anthology: Stories that Need to be Told.
This is my 262nd Blog post. It’s a significant number for me. I spent the first twenty years of my life in a two-bedroom apartment in a three-story brick building in Jersey City, New Jersey: 262 Summit Avenue.
Most of the buildings on the block were three stories with an apartment on each floor. I could name everyone who lived on the block. Few people moved. Multigenerational families stayed in close proximity. My grandparents’ place was a two-block walk away.
2009 visit. The gates are new.
We children couldn’t do anything wrong without a neighbor correcting us or telling our parents. In the summers we played outside until evening darkened the skies and the streetlights came on. In the colder weather, when the chill kept folks indoors, the older women sat by their windows as if afraid they would miss something.
Across the street, taking up most of the block, sat the massive New Jersey National Guard Armory. The National Guard soldiers came for weekend training. Blaring brass bands cut above the street traffic. It was only when I reached my teens that seeing all the young men in uniform kept me close to home.
In summers, the Armory hosted the Rodeo and big-name performers: Frank Sinatra and Jimmy Durante. My friends and I, probably around ten or eleven years old, had managed to sneak through a side door and wander around before the Rodeo started, watching the workers set up the stands for the audience and the pens for the animals. During the show, we edged up so close to the action that we could hear the cowboys’ grunts, as they desperately tried to stay on the backs of the bucking horses or angry bulls.
We listened to Frank Sinatra from the shadows along the walls. A spotlight followed his lanky body on the stage as he crooned into a microphone. We felt invincible.
In retrospect, it seemed easy for my friends and I to slip into the Armory. I don’t remember ever once getting kicked out. Perhaps the workers chose to look the other way.
My best friend, Carol, lived at one end of the block and I lived on the other. I’ve written about her in a post: Taking the Bus. We met when we were four or five years old, attended the same grammar school and high school. After she married, she and her husband moved to south Jersey. Two years later, I married. We moved to Newark, then near DC, making other moves until we eventually settled down in North Carolina.
After many years of exchanging Christmas cards, Carol and I now live 20 miles from one another. When we get together, we rehash our childhood memories on the 200 block of Summit Avenue. The city street that was the Village that raised us.
Making applesauce sort of represents living life to the fullest. I think prayer is sometimes about asking God to let us do what we can and enjoy ourselves. Picking apples and making applesauce has made me do that.
—Marv Roelofs
I called Marv soon after he received the diagnosis of Stage IV Small Cell Lung Cancer this past January. I don’t recall if I have ever called him in all the 40 plus years his wife, Lois, and I have been friends. Now in the past few months, I had called him twice.
After his diagnosis there was a sense of urgency. The doctors had told him the cancer was very aggressive so when Marv declined treatment, I figured I better talk to him right away. How long would he be around? I needed to tell him how I appreciated his encouragement and support of my friendship with Lois.
Lois and I met in Chicago. Two nurses with two young children each: a boy and a girl, and both ready to break out of the stay-at-home-mom mode. Together, in the late 70s and early 80s, we completed undergraduate and graduate nursing degrees. In 1992 I moved from Chicago.
We didn’t need to get permission from our husbands to spend time away from home or to spend money on plane tickets when we rendezvoused over the years. But it was Marv’s encouragement and support of our long-distance friendship and warm reception and hospitality during my visits that I wanted to acknowledge. Since Lois didn’t cook, or wash dishes for that matter, it was Marv who made the dinners, baked the banana bread, and served Lois and I as we continued deep into our conversation—as women are inclined to do.
That phone call melted into tears for both of us. Maybe the rawness of Marv’s diagnosis and the awareness of impending death were too close to the surface. I was glad I had called to say thank you.
After that first phone call and when Marv didn’t die in a matter of days or weeks as the doctors had suggested, I called him a second time. It was about six months after the first phone call. He had written a book of his life and made fifty-five copies to pass along to family and friends. I read it almost all in one evening. I knew some of Marv’s stories already, but his life on the farm and the details of his self-started business was new to me. I was especially taken with the way he wrote—as if we were sitting in his living room in Sioux Falls, or back in Chicago, just sharing his recollections.
That second phone call was more uplifting. We laughed more. Cried less. I told him how much I liked the book, especially the story about him making applesauce.
The first Fall after Marv and Lois moved from Chicago to Sioux Falls, he noticed that many people didn’t pick the apples from their trees. The apples just fell and rotted on the ground. He knocked on doors asking to harvest the apples, not for profit, but to donate them to the homeless and churches, and to make applesauce.
It was right around apple picking season that I visited Lois and Marv in Sioux Falls. With a refrigerator and freezer stuffed with applesauce in zip-lock bags, Marv sent Lois and me into the neighborhood to give away the first samplings of his culinary concoction to neighbors that Marv and Lois had barely met. The friendly neighbors graciously accepted our offering.
Marv was a successful business person, a loving husband, dad, and grandfather. Like all of us he was also a complicated human. But it was Marv, the person who picked the apples and made applesauce, whose memory is the warmest in my heart.
I have served on the Family Patient Advisory Council at my local hospital in Raleigh, North Carolina since it’s inception a little over two years ago. I became the first Chair and now I am the Senior Chair.
This last week, the hospital funded my travel to Chicago to attend the Patient Experience Conference 2018 where the Chief Nursing Officer, Manager of Service Excellence, also a nurse, and I gave a presentation: Operationalizing Patient Advisory Council: Going Beyond the Boundaries.
I felt privileged to discuss the successes and challenges of our group and pleased, as a retired nurse, that I am using my background in health care services to facilitate change. In this case, to promote and improve the patient experience.
Patient Experience
Patient experience encompasses the range of interactions that patients have with the health care system, including their care from health plans, and from doctors, nurses, and staff in hospitals, physician practices, and other health care facilities. As an integral component of health care quality, patient experience includes several aspects of health care delivery that patients value highly when they seek and receive care, such as getting timely appointments, easy access to information, and good communication with health care providers.
Understanding patient experience is a key step in moving toward patient-centered care. By looking at various aspects of patient experience, one can assess the extent to which patients are receiving care that is respectful of and responsive to individual patient preferences, needs and values. Evaluating patient experience along with other components such as effectiveness and safety of care is essential to providing a complete picture of health care quality. – Agency for Healthcare Research and Quality
At the conference, not only did I learn about the patient experience movement and its growing numbers of supporters, I came away excited about the direction of health care.
After the conference, I met my friend Lois. Our friendship spans 40 years. We had one day of sleet and one day of sun in our quest to revisit old haunts and discover renovations to Chicago’s old buildings. At Navy Pier we asked a mother and daughter to take our picture. It turned out the daughter was starting nursing school with the intent to become a nurse practitioner. At this serendipitous meeting, Lois and I shared sage advice about the rewarding aspects of a nursing career.
Back home in temperate North Carolina, I look back at my time in Chicago and feel privileged to have attended the conference and had the added perk to have spent time with Lois.
Recently rummaging around in my office closet for my watercolor materials, I came across an old envelope with a faded 5 X 7 picture inside. Years ago I had planned to frame it. Obviously, I forgot all about it. Most of what is stored in the closet fits into the category: out of sight, out of mind.
This closet is stuffed with past journals, yearly calendars dating back more than 20 years, greeting cards, and evidence of my artistic endeavors: pastels, watercolors, acrylics and scores of papers for each medium, along with canvases, and a variety of paint brushes. However, the significant items sharing the confines of the closet are the photographs spilling out of albums, in shoeboxes, and in dilapidated wooden frames.
Over our many moves, I boxed my memorabilia without weeding anything out but only adding to the collection, always promising myself that I would organize the stash.
And as the years passed I became more reluctant to tackle the task. Maybe the constraints I have placed on the act of clearing out do more to deter me than support me. I will need two days since I will pull everything out of the closet, not returning anything until I have handled it and made the decision to toss or save. Did I say I needed only two days?
I can see myself sitting on the floor surrounded by these old pictures, fingering each while nostalgia washes over me. I will be revisiting places I lived, missing family members who have long since died, dealing with changes that the passage of time had not only had on me but my spouse and children. Yes, I know how this all will affect me and I am not anxious to deal with such an emotional task.
Getting back to the picture.
We rented a house on Sister Bay, Wisconsin after I read about the area in the Chicago Magazine: the best place to see the fall colors and beautiful sunsets. Since we were “poor”—my husband was in graduate school and we were living on my salary as a part time nurse—I wrote the owner of a rental home asking for a discount. Since we didn’t go during the annual Fall Fest, the owner agreed. Our children loved that we were steps from the bay. They explored the large room on the second floor with rows of single beds and at least two cribs. We took out the rowboat on that first visit, catching the winds of an abrupt storm and just made it back to shore without capsizing. We rented bikes to survey the fall colors. Our favorite breakfast restaurant had a goat grazing on grass that grew on the roof.
We rented the same house over the years, without the discount. Each time the owner had made improvements: a porch, a wrap around deck, bedrooms replacing the one large room on the second floor, and finally he declared “no children. “
On our last visit, my mother came with us. Late one afternoon she must have picked up my camera on the deck and took this picture of my daughter and me. She also captured my son sorting stones on the narrow strip of beach. My husband probably was grilling hamburgers on the other side of the deck. Perhaps after another magnificent sunset, we went inside for dinner. Perhaps afterward, my son would show us the best stones he picked at the water’s edge to take back home.
Perhaps sorting through the old pictures won’t be too daunting after all.
Next Sunday, November 5th, will be the 20th anniversary of my mastectomy. Afterward, my surgeon draped her arm over my shoulders and said I was “cured” as she escorted me out of her office on Connecticut Avenue in Washington, D.C.
Each November 5th , I would make a big deal of the anniversary date of my surgery, or my second birthday, as I called it. I went someplace special. Like a superstitious baseball player, I ran through the same ritual when I came to bat. I wrote down what I was grateful for in my journal, contacted friends and family, telling them how much I appreciated their concern and attention when I was in the throes of cancer crazy and then scheduled something I would do all alone.
The first year, I took Amtrak from Union Station in Washington, D.C. to New York City and ambled up Fifth Avenue on a glorious fall day. In Central Park, I ate a hot dog with mustard and sauerkraut and listened to a skinny old guy dressed in a bright blue suit with a vest and spats, who sat on a bench across from me, playing a ukulele and singing songs my mother and I had listened to on the small radio on top of the refrigerator when I was a kid and she cooked supper. Wait till the Sun Shines, Nelly. Over There. Don’t Sit Under the Apple Tree with Anyone Else but Me. Filled with nostalgia of my childhood and gratitude for my life, I licked the mustard off my fingers and walked back down Fifth Avenue to Penn Station and back home. I repeated some version of this for the next nine years.
However, when my ten-year anniversary rolled around, I decided I would no longer engage in this superstitious ritual. I no longer needed to hang on to the label of cancer survivor, or replay each detail of the cancer journey as a holy event.
On another glorious fall day, I traveled from my new home in Chapel Hill, North Carolina back to DC for what I called the last celebration. First, I had lunch with Cathy, a nurse who was diagnosed with breast cancer around the same time as I. While I had stage 0—no infiltration, she has stage III. She sat across from me in McCormick & Schmick’s front dinning room, a seafood taco salad front of her. She had lost 30 pounds, intentionally, and looked professional with her soft beige jacket, long green velveteen skirt and government ID hanging around her neck. During radiation treatments she had worn a strawberry blond wig. Rather wild for a woman in a religious order.
“Well, I believe that if I didn’t get breast cancer, I would be still be living in the religious community. It was having cancer that lead me to evaluate where I was and why. It took two years from the first questioning to finally leaving,” Cathy said as she snapped off a piece of the taco shell, and scooped up some beans and fish into her mouth. I wasn’t surprised she left—she always struck me as an independent person—more of a free spirit than a follower who vowed obedience to an organized religion.
“Remember when we talked about whether or not cancer had changed us? You said you were still the same, right?”
“Yeah,” I said, “ I wished I would have become a better person, more caring and polite. But I am the same big mouth from Jersey City. Clumsy and rude.”
Cathy laughed even though she had heard this before.
“Are you happy?” I didn’t know why I asked her—she looked content.
Her eyes widened. “I thought I was going to die.”
Maybe a cancer diagnosis does change you. Not overtly. Some foreign emotion tugs at your gut: an awareness that only rises when it’s important. I didn’t do anything great. I just lived more honestly. Taking responsibility for my own thoughts and actions, I needed less approval from others.
After lunch Cathy went back to work and I headed to the National Cathedral on Wisconsin Avenue.
While my “lesions” were investigated and various treatments were discussed, I frequently made a detour on my way home after work to the Chapel of the Good Shepherd. Small, with seating for seven worshipers, the chapel was tucked away off the courtyard on the crypt level of the cathedral. There I would sit with my fears, always alone. The cool concrete walls, dim lightening, and silence calmed me. I focused on the stature of Christ, a lamb cradled in his arms, his hand burnished smooth by the touch of visitors seeking miracles. I always left infused with strength to face whatever was coming.
This time, when I entered the chapel, I wasn’t alone. To my left, a young woman with long dark hair silently sat with her legs drawn up and her bare feet on the bench, her shoes placed neatly on the floor in front of her. Her dress didn’t classify her as homeless. Her brow was knotted in worry and her cheeks were wet with tears. She didn’t acknowledge me but kept her eyes fixed on the statue of the Good Shepherd. My own mission seemed insignificant in the presence of her agony.
After a few minutes I left. But not before patting the Good Shepherd’s hand. “Thanks for being there when I needed you,” I whispered.
Now approaching my 20th anniversary I know that a “cancer” diagnosis has forced me to appreciate that there are no guarantees in life. I need to take chances. I don’t see any choice but to dive into my dreams.
As I look back on my life that has been rich and challenging, I remember that young woman and wonder what was so awful in her life at that moment. I hope, like me, she went back to the tiny Chapel of the Good Shepherd, her problems resolved. And before she left, she touched the back of Christ’s hand thanking him for being there when she needed comfort and then got on with her life.
