The Power of Two

Update 9/22/2013: 
"With profound sadness as well as tremendous gratitude for her two organ donors and donor families, the love of so many family, friends and fans, and the brightness she brought to all of our lives, we regret to share that Ana Stenzel passed away... following a hard fought battle with intestinal cancer. With her transplanted lungs, she was breathing easy until the end. We are so pleased that Ana's legacy will live on in "The Power Of Two" and in all of our hearts." --The Power of Two


March 2012:
 
The Power of Two

Isabel Stenzel Byrnes & Anabel Stenzel

This book is now a film featuring the lives of Ana and Isabel, two half-Japanese identical twins that battle the genetic lung disease cystic fibrosis. Despite transplants and other medical difficulties these women emerge not only as authors but go on to help the world as global advocates for organ donations. 

The inspiring  film The Power of Two will be shown from 6:00 to 8:00 p.m. at The Truman Forum in the Kansas City Public Library, Plaza Branch. 

4801 Main Street Kansas City, MO 64112

Doors open at 5:30 and RSVP request can be made online

Its a free public event so bring the family along!

My name is Anabel Stenzel and I’m a co-author of a University of Missouri Press (UMP) book, The Power of Two: A Twin Triumph Over Cystic Fibrosis. I wrote this memoir together with my sister, Isabel (or Isa). We are half-Japanese, half- German identical twins from California. In this two-part blog, Isa and I would like to share our experiences as authors, and all the adventures we’ve had since the publication of our book in 2007.

Back in 1972, Isa and I were born with cystic fibrosis (CF), a genetic lung disease that affects about 30,000 Americans. CF promises a very difficult lifestyle, but Isa and I were blessed to share the challenge. Together, we endured daily respiratory treatments and frequent hospital stays to treat chronic lung infections. By the time we were 18 years old, each of us had been in the hospital about 36 weeks of our lives, cumulatively. During these long hospital stays, Isa and I started a joint endeavor of writing a journal about our hospital experiences. That simple time exploring with writing helped fuel our desire to eventually publish a real memoir.

Unfortunately, with each lung infection, our lungs became progressively damaged. My lung disease worsened more rapidly than Isa’s. Despite tremendous fears, when I was 24, I decided to go on a waiting list for a double lung transplant. On June 14, 2000, a compassionate family who faced a tragedy said yes to organ donation, and a donor saved my life. Within 12 months, I was swimming, hiking, jogging, volunteering and working almost full-time. It was truly human resurrection--- thanks to an organ donor and many blood donors.

Two years after my surgery, Isa’s health declined precipitously. When she turned 30, she was forced to “retire” from social work and go on disability. Since we always thrived with some therapeutic distraction from illness, Isa decided to embark on writing our twin memoir.  She signed up for local writing workshops and read memoirs voraciously. Isa and I assigned each other various topics and stages of our lives that we wanted to write about. We’d proofread what we each had written, and of course, as sisters do, we bickered about divergent memories or perspectives, but ultimately respected our own voices.

The act of writing awakened something deep inside of me. A lifetime of physical limitations had made me feel self-conscious, insecure and inferior to my healthy peers. By writing down stories of my past, I found value in my unique perspective living as a twin and as someone with illness. I witnessed how my drafts started full of anger and gradually involved into a place of deeper introspection, maturity and even humor. The honest reflection and review of my life culminated in a sense of acceptance and understanding. I wrote about friends who had died, and through describing their laughs, mannerisms, and shared adventures; I could bring them back to life, and come to a place of closure in my grief.

While writing has always been my passion, professionally, I am a genetic counselor, while Isa is a social worker and health educator. We wanted our memoir to be a teaching tool for families struggling with illness as well as health care providers. We hoped that members of the general public could also value the spiritual lessons and existential messages in our story.

Finding a large corporate publisher who viewed the story as “marketable” proved to be a difficult task, and we soon turned to academic presses. University of Missouri Press had a history of publishing memoirs, so we submitted a query letter. Within weeks, Beverly Jarrett, the Editor-In-Chief at the time, requested that we mail the complete manuscript. Not long after, in October 2006, Isa and I met with Gary Kass, Acquisitions Editor, who happened to be traveling to our area in Northern California for a book meeting. We let out huge sighs of relief when UMP offered to publish our book. As Stanford graduates, Isa and I value academic institutions, and appreciate academic presses for their respect of the educational value of a book’s content. We were thrilled. The anticipation of a final product overcame the next months of meticulous editing and manuscript preparation. Sara Davis offered extraordinary support with the details leading to our final product.

Within months, for unknown reasons, however, my body started to reject my lungs, and soon I was in a wheelchair with lung failure. I felt terrified at the idea of Isa going on book tours without me. I was determined to see my book come out, exemplified once by my comment, “I’m too busy to die!” The book focused my energy on surviving. Thankfully, I was blessed with another second double lung transplant in July 2007. Being saved again, “the power of two” was once more robust.

When the The Power of Two was released in late 2007, Isa and I exploded into manic activity. Isa started a website, blog and got a business license and sales permit. Thanks to Marketing Manager, Beth Chandler, our book was featured in People magazine (which apparently led to exhilarant screaming by Beth Chandler in the office) and several other media outlets. We set up our own book signings at bookstores across the United States. In March 2008, we drove to the Pacific Northwest, and in April 2008, we started a 40-day tour across the United States that included book signings and lectures with cystic fibrosis and organ donation groups. On our drive from Albuquerque to Chicago, we made sure to drive through Columbia to stop by and greet our friends at the Press. I felt so blessed to have University of Missouri’s Press recognize the story of two Californian women!

Soon, the solicitations for speaking engagements from hospitals, universities and conferences started, and still continue today, five years later. Thanks to generous pharmaceutical grants, and UMP’s cooperation (especially Debbie Guilford and Lyn Smith), we have been able to provide free books at specific events to families living with cystic fibrosis. Countless families have praised and admired our book in ways that we never imagined. Our illness community was starved for hopeful stories and positive role models. Parents, siblings and patients could relate to our family’s struggles, thus feeling less alone. Best of all, Isa and I were healthy, traveling the world together and enjoying emotional highs we thought a life with CF could never offer.

Thank you for reading my long blog post. Isa will continue this blog with her version of what happened after the publication of The Power of Two.

-ANA

Sneak Peek! They Raised Me Up by Carolyn Marie Wilkins

They Raised Me Up: A Black Single Mother and the Women Who Inspired Her by Carolyn Marie Wilkins

In They Raised Me Up, Carolyn Marie Wilkins juxtaposes her personal story as an up-and-coming musician and single mother in the 1980s with the histories of influential women from her family’s past. This poignant and telling narrative not only offers insights on the travails of a musician and single mother but also humanizes the struggles of black and biracial women from the early twentieth century into the 1980s.   The interweaving of memoir with family history creates a cohesive, entertaining, informative, and engrossing read that will appeal to anyone with an interest in African American Studies, Women’s History, Ethnomusicology, or simply looking for an intriguing story about music and family.

 --Excerpt--

Chapter One

Carolyn and Sarah

Somerville, Massachusetts, August 1986

…For the tenth time this week, I ask myself whether it was a mistake for me to leave Tacoma. And for the tenth time this week, I remind myself that if I am ever going to realize my dream of “making it” as a jazz pianist, Boston is the place to be, at least for now. Maybe one day I’ll move to New York City, the Mecca of the jazz universe. But I am a black single mother with a four-year-old biracial baby and no money. At the moment living in Somerville, a workingclass suburb on the outskirts of Boston, is difficult enough.

Carolyn and Sarah, 1986

The voices have returned, and louder this time. The man, who sounds black and southern, is shouting. “Where is it? Don’t lie to me! You know where it is.” The woman, whose race I can’t identify, screams in response.

Blam!

Something lighter, glass by the sound of it, crashes against the wall. 

I roll out of bed and swing my feet onto the carpet. For once, I’m happy I couldn’t afford a bed frame—it’s quicker and easier to get up from my sagging old mattress without one. Should I call the police? As I sit considering my options, the voices and footsteps retreat away from the wall, and my bedroom goes quiet again. 

     Since my daughter and I moved in three weeks ago, I’ve heard these same neighbors fighting on several occasions, always late at night. Shady characters in sagging pants congregate on the stairwell next to their doorway, and it has crossed my mind more than once that perhaps they are selling drugs. Of course I should call the police. However, I had seen enough movies and read enough tragic front-page stories to know that turning in a drug dealer to the cops could have fatal consequences. Did I really want to put Sarah and myself in danger?

…My next-door neighbors had been quiet for several minutes. I propped myself up and checked the time. 3:45 a.m. It was very late, but there were still a few hours left before the alarm went off. I repositioned the covers so that Sarah’s feet would stay warm, fluffed my pillow, and rolled into a more comfortable position.

I had barely put my head down when I heard footsteps running next door, followed by a loud crash. Now I could hear the man’s voice clearly. “Where is it, you lying whore! You better get my money if you know what’s good for you. I’m gonna kick your sorry black ass.”

The woman was crying piteously now.

Blam!

My Romare Bearden print clattered to the ground as the paper-thin wall between the two apartments absorbed another blow.

“Don’t mess with my money, woman. I swear I will kill you.”

Blam!

Blam!

Carolyn and Sarah in Somerville, 1986

“No, no!” She was screaming now, and I could feel her terror. Once again I heard running feet.

Much as I wished this dispute would wind down by itself, it was clear I was going to have to get involved. From the sound of things, he was throwing her repeatedly against the wall. I couldn’t just lie there and do nothing. Extracting myself from the bed one more time, I felt my way across the carpet to the wall phone in the kitchen and dialed 911.

From my kitchen, the fighting next-door was barely audible. Hopefully, the police would arrive before anything more serious happened. I was now free to return to bed. But between the drama taking place next door and the painful memories rolling around inside my head, I was more awake than ever.

I stepped into the bedroom to check on Sarah one more time. The poor kid had been through plenty, and if I had anything to do with it, tonight would be the last time she would ever hear the sound of grown-ups screaming at each other. My daughter is far and away the most beautiful child on the planet, at least in my eyes. Although her skin color is two shades lighter than mine, we share the same heart-shaped face, button nose, brown eyes, and unruly hair.

“Mommy will keep you safe,” I whispered, kissing the tangle of curls at the top of her head. “I promise.” Admittedly, I hadn’t always done such a good job of keeping her safe in the past, but things were going to be different now, I was sure of it.

I poured myself a glass of milk and sat down at the kitchen table to wait for the police. I tried not to think about how tired I was going to be at work the next day or how I would find the energy to be a good mother when I got home later that night. I was going to have to follow the all-purpose advice my grandmother Alberta had been famous for dispensing—to “put it in the hands of the Lord.”

     Grandmother Alberta died in 1965 when I was twelve, but Mom said I looked and acted just like her. To hear my mother tell it, I had inherited my grandmother’s musical abilities, along with her spunk, her high Indian cheekbones, and her rich soprano voice. According to family legend, my great-grandfather disappeared when Alberta was just a baby, leaving my great-grandmother Lilly to raise their child alone. That would have made my great-grandmother a single mother, just like me. I wondered what my great-grandmother would have made of my situation. Back in the early 1900s, Lilly Pruett had been a black woman raising a child alone in Alabama.

Bet she would have had plenty of down home advice to offer, I thought, taking another sip of milk. Wonder if she ever had to call the cops about her next-door neighbors.

As I stared absently out of the window, the strangest feeling came over me. Yes, my marriage had failed. And yes, I was flat broke—struggling to realize my quixotic dream in an unfamiliar and dangerous place. But in spite of everything, I suddenly felt at peace, as if a voice inside was whispering: You come from a long line of survivors, Carolyn. Women who, when faced with slavery and segregation, never, ever gave up. You are stronger than you know.

Chapter Two

Lilly

Midway, Alabama, November 1896

Lilly and Alberta, Kansas, 1908

…On the day before Thanksgiving 1896, Lillian Pruett and Richard King walked into the Bullock County Courthouse in Union Springs, Alabama, to apply for a marriage license.¹ Although she was just fourteen, my great-grandmother was already a beautiful woman with luxuriant brown hair, shapely curves, and striking oval eyes. We do not know what Richard King looked like, only that he was thirty-one years old, that his family came from Union Springs, and that he, like most of Bullock County’s African Americans, earned his living farming a patch of ground rented to him by a white landowner.

The following day, Lilly and Richard were married in Lilly’s hometown of Midway, Alabama. Although history has left us no record about the details of the ceremony, I like to imagine that all of Lilly’s Pruett kinfolk were in attendance. I picture the wedding party gathered for a soul food banquet, with ham from the family smokehouse, fresh picked greens cooked with fatback, peas, and perhaps some roasted corn. Surely they ate fresh baked cornbread and biscuits drenched in butter, and for dessert, pound cake and huckleberry pie.

     In my imagination, Lilly and Richard’s friends are dancing to the tune of a local fiddler. As the celebration continues, someone struts his stuff with a buck and wing dance. Flaying the air with his arms, he leaps, twists, and turns, his feet tapping out sharp, intricate rhythms while the crowd circles round him, singing and clapping their hands. Lilly revels in her special moment and takes a turn with each of the dancers, her long hair flying, her face flushed with joy. Days of leisure such as this would have been rare for Lilly and Richard.

     As a child, Lilly grew up on the very same land her grandfather had worked as a slave. In exchange for half their cotton crop, the Pruett family’s landlord provided the family with seed, housing, equipment, and farm animals. The cost of these items was then deducted from their profits at harvest time. The more money the Pruett family made, the more money the landlord made. However, if the crop failed, the Pruetts were still responsible for the supplies they had been advanced, and they earned nothing for their entire year’s labor.² The two-room shack provided by the Pruett’s landlord was primitive—no glass in the windows, no screens, and no indoor plumbing. All the water needed for washing, cooking, and drinking had to be hauled up from the well several times a day.

Georgia Hall

     Lilly’s mother would have risen before dawn to cook breakfast for her husband and their four children. One can imagine Georgia humming quietly to herself in the blue-black darkness as she stirs last night’s ashes and places another log on the fire. As she rolled out her biscuit dough and set the fatback to sizzle in the pan, perhaps Georgia sang a mournful spiritual:

Oh Lord, oh my good Lord

Keep me from sinkin’ down.

Or, as the sun peeked over the horizon, perhaps she sang something more cheerful:

I got a robe, you got a robe

All God’s chillen got robes

When I get to heaven gonna put on my robe

And walk all over God’s heaven.

By the time the sky was fully lit, the Pruett family would have finished a breakfast of fresh cornbread, biscuits, molasses, and fried salt pork and begun their day in the cotton fields.

In 1896 there was only one way to harvest cotton. It had to be picked by hand, row by row, one plant at a time. With the survival of the entire family at stake, there was no room for shirking or squeamishness. From dawn until sunset the Pruett men, women, and children stooped under the weight of the heavy cotton sacks they dragged along behind them, sweating in the broiling Alabama sun. The cotton boll sits deep in its stalk, well protected by sharp thorns. By the end of the day, Lilly’s and Georgia’s hands would have been raw and bleeding.

When Lilly’s father, Noah Pruett, was a boy, African Americans in Bullock County had hoped for a better life. For five years after the end of the Civil War, black men voted in elections. There had even been African American representatives in the state legislature. In 1871, however, white

Alberta King Sweeney, c 1905

so-called Redeemer Democrats seized power and quickly enacted a series of repressive laws designed to restore the state’s African American citizens as closely as possible to their former status as slaves.³ By the time Lilly was old enough to marry, no black person in Alabama was permitted to vote, to sit next to whites on public transportation, or to testify against a white man in court. Any African American brave enough to question this repressive system ran the risk of receiving a visit from the masked “night riders” of the Ku Klux Klan. Those who persisted in challenging the status quo faced the likelihood of being beaten, burned out of their homes, or lynched. In Bullock County alone, seven people were lynched between 1889 and 1921, including a man who was dragged from the jail behind the courthouse in Union Springs and hung by a mob in 1911.⁴

…As a married woman, Lilly was expected to begin having children immediately. Without children to help out with the chores and the cotton harvest, an Alabama sharecropper would have a hard time making ends meet. Within a year of her wedding, Lilly King, then fifteen years old, was pregnant. In 1898 black women in rural Alabama did not give birth in hospitals. Even if Lilly had been able to afford the costs of hospital care, no maternity ward in Alabama would have served her because she was black. Instead, Lilly gave birth at home, cooking, cleaning, and working in the fields right up until her water broke. While Richard went to fetch the midwife, Lilly labored in childbirth for several hours. While she waited, it’s possible my great-grandmother drank tea made from a wasps’ nest, an old folk remedy thought to relieve the pain of childbirth.⁶ And surely Lilly would have prayed—and prayed hard. Stillbirths and miscarriages were commonplace, and the mortality rate for Bullock County’s black mothers was high.⁷

Fortunately, Lilly King was young, strong, and lucky. On November 16, 1898, she gave birth to a healthy baby girl. There’s a story in my family that Lilly named her daughter “Albirda” because she was destined to sing like a bird. Lilly herself had a rich, vibrant, contralto voice, and presumably her mother also sang well. Although my grandmother’s legal name was Alberta Beatrice King, this story speaks to the importance placed on singing by the women in my family.

Coming Soon!

Lucky That Way: Rediscovering My Father's World by Pamela Gerhardt will be available in just a few weeks. Preorder it today!

Lucky That Way, a nuanced, richly engaging memoir, chronicles the joys and tribulations of a daughter who rediscovers her father as he nears the end of his life. Ernie Gerhardt, an artist and teacher, is largely estranged from his five children, but when he suffers a debilitating stroke, his daughter Pamela must fly to Las Vegas to tend to him. When she arrives to find Ernie newly and shockingly fragile, she is hit by an unexpected wave of tenderness. The emerging theme of imperfect humans struggling with life's great mysteries will strike a chord of recognition with the tens of thousands of Baby-Boomers and Gen-Xers who are currently facing similar circumstances with their elderly loved ones. Pamela Gerhardt’s heartfelt story about a family coming to terms with an aging father’s illness and imminent death takes readers on an emotional roller coaster that highlights love, loss, humor, and sadness.

Excerpt

Day 1

I am in the clouds. I am floating.

I am flying to see my father in an intensive care unit, a man I haven’t seen in seven years.

Maybe he is dying. Maybe not.

I am simply moving forward, a couple miles a minute, as it were, thirty-two thousand feet above the Midwest plains.

I am vacant. I am mostly dreading Las Vegas, the city where he was hospitalized while on vacation, a city of phony Sphinxes and plaster Eiffel Towers. I am thinking that when I see him I will ask him, “Couldn’t you have had your stroke in Paris—the real one?”

He will laugh, edit the punch line, add something funnier—“Could have been worse. Paducah.” If he gave his five children a gift, it is irreverence.

When I was a kid he once asked me to make a prank phone call to his boss. He worked as a salesman for a company named G. S. Robins. My two brothers and two sisters and I were well aware of how much he hated his job. Art was his passion. But he had gone to college on the GI Bill, like so many of his peers after the war, and gotten a degree in business. “It wasn’t heard of in our family, in those days, to get a college degree, much less one in art,” he once told me. “I never even considered it.” He found himself driving the Chevrolet long distances during the week to places with lonesome-sounding names like Wichita and Oswego, staying in hotels, returning on Fridays with a backache as he headed to his easel wedged between the washing machine and the tool bench in the basement. His attitude toward his job continued to sour. Sitting at the dinner table, we heard about how much he disliked his boss, a man who smoked fat cigars and pressured Dad to increase sales. One day, when I was eight, Dad decided to go to grad school and get an MFA in art. He graduated in just two years and landed a job as a high school art teacher and quit his job at G. S. Robins. Meanwhile, I had been working on a few bird calls—especially that of the robin.

You might guess where this is going.

The day he quit he dialed the boss’s office number on the beige wall phone in our St. Louis kitchen. “Do your thing,” he whispered to me and stretched the spiral phone cord so that he could hold the receiver near my mouth. I chirped away, doing my best angry robin call, and he hung up, doubling over with laughter.

“We sure showed them,” he said, clutching his stomach, laughing hard enough to produce tears. Even at that age, smiling with my dad as he sputtered over his irreverent joke, I knew I was facing something deeply complicated, a worldview that might cause me trouble in the future.

I am letting the plane ride unfold one minute, one hour at a time. I am thinking of my friends who have gone through something similar in recent years with their own aging parents. How do we find meaning within the sea of statistics on America’s aging population? And why does this feel different, less clarified, than watching my own parents care for their aging parents?

So much has changed. For one, my parents lived a five-minute drive from theirs. We will have stories about all this aging. We will have stories about caregiving and the intimacy that comes with it. We might consult guidebooks and websites. We will learn how to interview directors of assisted living facilities by way of long-distance phone calls. We will learn how to monitor blood pressure and blood sugar. But looking out the window during the four-hour plane ride, I already know: that stuff is the easy part. In my case, at least, something far more challenging is at stake.

I haven’t seen my father in seven years. A stupid story, it goes like this: I asked him one Christmas to control his drinking. But that’s not the whole story. It began after Mom died, when he had decided to fly Debbie, who had been diagnosed with Schizophrenia a few years earlier, to his South Carolina house for Christmas. The oldest of my siblings, she still lived in a small house down the street from our former home in St. Louis. She was stable, but at times believed she was a nun, a prophet, who often tried to call the Pope and the chief of police of Rome to tell them about her prophesies concerning the future of the Church. He, more so than anyone else in the family, struggled in her presence. He said on the phone, “Just don’t leave me alone with her. Promise?” I promised. He started out at noon on Christmas Eve with a celebratory bloody Mary. My other sister and brothers and I would have joined him, but our small kids were clamoring to see the new Disney movie at the theater down the road. I had forgotten my promise. When we returned, Dad was swaying when he walked, and by evening he was passed out on the floorboards of his back porch. Afterward, I returned to my home in the Washington, D.C., area and wrote him a letter: Please stop bingeing like that. You are at your best when you are not drinking. You made your best paintings when you were sober. The movie had been Toy Story 2, and on the eight-hour-drive home to Washington I kept thinking: stupid Disney. Had we stayed at his house, maybe he wouldn’t have gotten so drunk. But that’s not the whole story, is it?

The drinking had begun before that, when Mom was sick. “That’s when it began,” Dad once told me. “The heavy drinking. And it helped. God, those martinis helped.”

I am floating. I am surrounded by revelers pumped up with the prospect of fortune on their way to Vegas, mostly young people who apparently didn’t get the memo that they might someday need to help someone walk and eat and pee. Or they might someday stop seeing a parent. The pilot, clearly enamored with the role of cruise director, announces sights along the way—The Rocky Mountains! The Grand Canyon! and our final destination with the enthusiasm of a carnival barker. “Buckle up and sit back. We’re on our way to Laaaas Vegaaaas!” he says several times during the flight. The cabin erupts in cheers. It feels, however inaccurately, as though I might be the only person on the plane with a different kind of agenda. What that is, I am not entirely sure.