HEATHER TOSTESON
INTRODUCTION
Along with reflecting our press's sustained interest in illness and meaning, this anthology Longer Than Expected has a personal genesis. Two of my sisters and a nephew have each had a life-threatening childhood illness and have lived into fruitful adulthood.
In the late 1950s, my younger sister had much of a kidney removed at the age of three and my older sister at the age of eleven, one of the early beneficiaries of open heart surgery, had an atrial septal defect repaired. After these operations I never had any sense of either of them being in any way different, either from the people they were before or from me. Certainly I never remember their being given any special consideration in the fairly constant squabbles of our childhood. Of my younger sister's surgery, I remember only being mesmerized by the movie King Kong, which was playing on a television in the lobby of the hospital, and my parents rudely drawing me away. We did not have a television at home, so that, not my sister's well-being, consumed my attention.
My older sister went away for a week with my father to Mayo Clinic and returned with a hatred of shots and an unwillingness to let any of her classmates know what had happened to her. I was filled with a combination of guilt (and something even less salutary) because while she was gone, I had let the secret out when I came to her class to pick up her homework. "She has a hole in her heart. Something needs to be done about it," I announced to the class. That hole explained a lot, I believed, about our relationship. But the increased blood flow didn't seem to change our dynamics, although it gave her more energy to be who she was called to be—bigger and older than me.
Our parents were physicians and I'm not sure if that was one reason that these significant illnesses didn't impinge in any direct way on our understandings of each other. The medical issues were comprehensible to them. They talked about them in the same way they talked about their work. My mother was also fairly sanguine, years later telling me that even though my older sister at birth was given a life-expectancy of about ten years, she had been sure that an operation would be developed in time to save her. It may also be that the illnesses were ones that could be—and were—surgically corrected without lasting sequelae. My younger sister recently told me that she never had the sense of herself as seriously ill. I have not asked my older sister, who has just turned seventy and resides in Senegal, having lived an adventurous and accomplished life all over the world.
My nephew's heart issues were more complex and did not appear to be ones that could be easily or completely resolved by surgery, even though he endured two open heart surgeries as a child and another as a young adult. His family's focus with him (and mine as well as his doting aunt) was to enjoy the present with him. These questions about what define a rich adulthood came later, when the last surgery in his early twenties greatly improved his heart function—a state that continues a decade later. When we're out walking with him now, we often have to ask him to slow down, which he graciously does, all of us sharing a bemused smile at this new reality that none of us saw coming.
But this particular conversation about what adulthood means to him is one we are all curiously reluctant to have. I don't think we are alone in that. One thing that struck me as a I watched my nephew grow up was how the uncertainty of his prognosis shaped how—or even whether—we talked about adulthood as a goal. What was adulthood in these circumstances? Is coming to unique, intimate terms with our own mortality in and of itself—at any age—a definition of adulthood? And if so, how many of us, truly, ever get there?
It is my observation that often we can live severe illness together minute by minute, week by month by year, but never share what these experiences mean, even though we may long to. I'm not sure why this is—whether direct conversation isn't the right way for us to speak soul to soul. Is it that we are all afraid to look mortality in the eye? Or uncertainty? Or physical limitations? Or pain? Or that life exceeds our imagining in the opposite direction—that we can feel fulfilled in conditions we never imagined would permit that?
I think these conversations have broad generalizability beyond illness. I think we would all be the wiser for participating in them. I also think that they require that we listen differently--beyond our own expectations and assumptions, anxiety and pity and hope--to the story a person is really living, the one that has their joy and grit and constancy and peace at its heart. This collection of thoughtful, moving writing is a wonderful place to begin that listening, that continuing conversation.
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We find here an abundance of experience from multiple perspectives. The ages of the writers range over half a century, the ages at which they experienced their life-threatening illnesses range from birth to their late teens. The illnesses include cancer, heart and kidney disease and iatrogenic paraplegia. Along with their memoirs and poetry, each contributor has responded to interview questions.
Contributions have been arranged by three themes. The first section, I Know What Story I'm Living, focuses on three real-time younger adults who are in the thick of living out their own growing understanding of adulthood. They ask us to meet them there. An important theme running through each contribution is being able to create our own unique good story, the one that Jamer describes in "Why I Hate Bananas" as surviving, but I might say is aliving--for what you take away from these stories is what it means for each of these writers to be vividly alive. Now.
"To be human is to be free of mind," Jamer says in her interview. "Cancer gave me one guiding principle: life is experienced in the soul." "People do not understand that I am able to overcome challenges," Marc Buchholz explains when discussing what people misunderstand of his experience, adding, "I enjoy life by what I am able to do instead of what I am unable to do." Carmela Caruso expands on this: "Being born with an incurable disease has taught me not to take life for granted. To appreciate what I have. To take risks I might not otherwise. To focus on the things that are really important to me. To give thanks for each day I've lived. That's a much better story than 'I was born with an incurable disease and will probably die sooner than most people.' There's no room for good in that."
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In the second section, On the Cusp: Mortality and Adulthood, we have two writers looking back thirty to forty years later at their anguishing entry into adulthood. Both of them suffered life-threatening illnesses at age nineteen, Roger Sippi Hodgkin's lymphoma and Dion O'Reilly severe burns over 80% of her body. They are inviting themselves--and us--to really know what that experience was and how it shaped them. "I want to know if you can listen as I relate what no one can hear, but perhaps with the blanket around me, I can tell the story, and you, knowing how safe I am will listen without changing the subject or worrying about me," Dion O'Reilly writes in "Burns and Blankets."
What comes through in that story, as well as in Roger Sippi's interview, is the enormous pain of life-preserving treatment. A reality that is still alive in them so many years later, not as an anguish but as emotional depth. Sippi says that after surviving cancer, "I have led a pretty fearless life, but it has given me perspective on what others go through when they experience trauma. I have become sort of the 'go to guy' in my neighborhood for consulting on cancers that people get, more recently, people have sought me out when other crisis situations occur in their lives." Dion O'Reilly expands on this, "I have found that, regardless of how extreme someone's pain might be . . . I can find some aspect of my experience that is helpful. . . . It's like there's a deep well within me waiting for someone in need to draw from."
But to appreciate the depth of that generosity, we need to be able to bear to know its source, which is raw anguish, formidable will, and grace. That is what they are asking of themselves and of us--to expand our definitions of life to encompass the near inconceivable, near unbearable, it asks of us and the gifts it gives back.
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In the third section, Reconfigurations, three writers look back on the emotional impact of their illness and how those responses have shaped their lives. They each describe discovering a new, more liberating frame in which to hold their experience.
Daniel Buchhaber describes the devastating impact of the nine months of social isolation at the age of four after a diagnosis of pericarditis and what has been required of him to release that pain. This requires that he broaden his own understanding and compassion to include the strains of this illness on his parents and also a full appreciation of the gifts he has gained in understanding the non-verbal states of children.
Janice Post-White looks back more than a decade after her son's grueling experience with childhood cancer to consider how it has shaped him--and her, looking particularly at what it may mean to him to repeatedly dream his own death, something she, as his mother, has never been able to contemplate.
Carol Towarnicky explores how her early defenses against the uncertainty, pain and isolation of kidney disease, dissociation and denial, have proved less useful as she ages and why she has needed to change religions in order to find one that feels more life-affirming and joyous to help her constructively assimilate her experience.
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We think of this web anthology as a continuing conversation, one that can take place through the special shaping mediation of writing and the inclusion of many voices. We hope you let these stories resonate with each other and with your own. We also hope you can share them with others—using them as a means to explore what it means to be able to claim the breadth and depth and complexity of our own experience, to define or redefine what the fulness of life, what real maturity, means to us when disease and mortality are inherent in that definition.
We are continuing to consider additions to this anthology, so if you have a story you want to share or know of someone who does, please consider joining us.
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