Fear of Randomness

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I bought a card the other day that says, “Please let me be the first to punch the next person who tells you that everything happens for a reason.” You can buy one from the talented Emily McDowell here.

In the best case scenario, “Everything happens for a reason” is an attempt to cheer a sick or suffering person with the notion that meaning can be derived from difficult experiences, important life lessons can be learned the hard way, that more will be revealed in time.

In the worst case scenario, this platitude shames people by implying that their suffering is justified or righteous—that is, in the big scheme of the Universe’s (or God’s) Plan, they got what they had coming (even if we don’t know the reason).

What “everything happens for a reason” is really about is fear—fear of the unknown and the unpredictable, fear that bad things like cancer happen for no reason whatsoever.

This is a reasonable fear, because it happens constantly. Bad things happen to good people, and coping with this fundamental injustice is an age-old moral struggle that has been talked and written about in all cultures for millennia.

I had a student in my health communication course several years ago who grew increasingly frustrated with me as she questioned me about my cancer experiences. It was the second or third class meeting of the course, so we didn’t yet know each other very well.

I had told students that my interest in studying health communication had come about because of my own serious health challenges from bone cancer and late effects. I was diagnosed in the middle of my sophomore year of college, so my story cut a little too close to home for some students’ comfort.

This student—let’s call her Chelsea—asked, “Did you smoke when you were young?”

“No,” I replied.

“Does cancer run in your family?” she asked.

I shook my head. “No, it doesn’t. Why?”

“Were you raised with a healthy diet?” Chelsea demanded.

“Reasonably so, sure. Not perfect, but lots of vegetables, and one fast food meal every week or so, but otherwise home cooking.”

I could see in her face before she said anything—skepticism, frustration, even anger. I smiled gently at her and waited.

“You’re acting like you just woke up one morning when you were a sophomore in college and you just had cancer,” she spit out.

I nodded my head. “Yes,” I said. “That’s exactly what happened.”

Chelsea sat back with her arms crossed over her chest.

I returned her gaze calmly. “I know that’s frustrating to hear. We all want to know what causes someone to get cancer. I wanted to know why me and why at that time in my life and what exactly caused me to get it. But usually there is no known cause.”

For years, I blamed myself for getting cancer. At the time I thought I was just being logical—after all, no precipitating event or other catalyst for the tumor was ever identified—but I now believe that I simply found it less scary to live in a world where cancer was my own fault than to live in a world in which chaos, random chance, and uncertainty prevailed.

If everything really did happen for a reason, then there would be logic and order and predictability in the world, and things would make sense. It is so tempting to believe that lie. It takes a lot of practice to surrender our staunch beliefs in causality, that every effect has a direct cause, and in fairness, that people get what they deserve.

Evidently I didn’t get enough practice in surrendering false certainty during cancer treatment.  But in the almost three decades since then, my many leg reconstructions, amputation, frustrations with using a prosthetic leg, and phantom limb pain have finally brought me to the point of accepting that most of the time I can’t know the answer to “why me” or “why him?”

While sometimes bad things happen because of someone’s negligence, greed, or thoughtlessness, we need to acccept that we live in a world in which random chance unfairly causes devastating illness, accidents, and even death.

While I wouldn’t care to actually punch the next person who tells me that everything happens for a reason, I will argue with her. I will speak the awful truth—that often there is no reason at all for terrible suffering. And we do no one any kindness when we pretend otherwise.

 

Happy Biopsy Day!

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Unlike most of North America, I am not celebrating Valentine’s Day today. Instead, I celebrate Biopsy Day. Today is the anniversary of the biopsy that confirmed my diagnosis of osteosarcoma.

Twenty-nine years ago today, my talented and compassionate surgeon broke the news that my right femur (thigh bone) would need further surgeries to remove the tumor and rebuild my leg with a bone graft and metal supports, as well as months of high-dose, in-patient chemo.

Like many cancer survivors, I turn contemplative on the anniversary of my biopsy. I feel tremendous gratitude for my continued survival. I am grateful for the amazing family, friends, neighbors, and colleagues who have supported me through my long journey of cancer care and then of late effects. I am deeply grateful for the privilege of comprehensive and affordable health insurance, without which I would not have been diagnosed as quickly, nor had access to high quality treatment.

At the same time, today is a day in which I grieve the loss of the person I was before cancer. I grieve the lonely nights in the hospital, the unspeakable pain, the endless complications and side effects, the TIA that left my entire left side numb and paralyzed for hours, almost 20 years of surgeries that culminated in the eventual loss of my leg, the advent of phantom limb pain, and learning to live on pain medications.

For a long time, I tried to reject the grief, sadness, and resentment that I feel about my cancer and late effects because I thought it was wrong not to be grateful for my survival. Osteosarcoma strikes many children and teens, killing them before they even have a chance to grow up. To feel pain and loss seemed horribly inappropriate for a long-term survivor when others die of cancer every day.

Yet over time, I came to understand my gratitude and grief as interwoven and inextricable from one another. My cancer diagnosis was a defining moment that forever altered my life course, in good ways as well as difficult ones. I would never have become a professor who studies communication in health care delivery if I had not had such intense treatment experiences. I would not be developing innovative methods for researching and sharing patients’ (and health care providers’) experiences if I had not been forced to conduct research in my unruly survivor body.

So today I embrace both my gratitude and my grief. I feel happiest when I am honest about the whole range of my emotions each year on my biopsy anniversary. Acknowledging my pain and losses frees me to release them in a way that denying them never could.

I wish you all a Happy Biopsy Day!

Nature and Me—Not a Love Story

IMG_0885.JPGThe animated film Madagascar features animals from the New York Central Zoo who unexpectedly travel to the wilds of Madagascar. When Melman, a hypochondriac giraffe, ends up with a tree branch and some leaves on his head and neck, he screams, “Nature—it’s all over me! Get it off!”

I empathize with Melman and have quoted his line many times (although I thought he said “the nature,” and that’s how I refer to it).

As an SF Bay area resident, I risk social isolation by admitting that I am a child of the great indoors and a dedicated city-dweller. My ideal of immersing myself in the nature is lounging on a restaurant patio with a Diet Coke and a cheese plate on a sunny day. I live in downtown San Jose. I do not hike, and I ride my adaptive bike outdoors only when the weather is dry, warm, and not excessively windy. I lived in California for 14 years before I finally made it to Yosemite, and once was sufficient.

My nature avoidance has a long history. Before I married Glenn, we made mutual vows that—among other prohibitions—there would be no camping in our marriage.

Despite my unwillingness to voluntarily hang out in the wilderness, I have no wish to hurt the nature that surrounds my beloved cities. I believe absolutely in the science behind climate change (and in taking steps to stop or at least slow down pollution that contributes to it), I want to protect our national and state parks, I dutifully recycle (although I draw the line at composting—eeeww!), and I bring reusable bags to the grocery store.

Yet I just do not find the nature particularly restorative as others do. The only exception is my fondness for ocean views and breezes, preferably accessed from hotel balconies or beach house porches.

When my friend jokingly asked me if I didn’t want to go camping with her daughter’s Girl Scout troop, I explained with mock regret that I had to be able to plug my leg in overnight to charge the air pump and the computer processor, so I really couldn’t sleep outdoors on the ground. This is true, but it is only part of the truth.

More truth is that I didn’t want to sleep on the ground or in a tent or whatever, long before my leg was amputated. Some people go “glamping” in lovely RVs and such, which offer electricity, invalidating my standard excuse and exposing the rest of the truth, which is that I just don’t want to be up close and personal with all that flora and fauna.

Years ago, black feminist writer (and nature lover) Alice Walker helped me through one of her beautiful essays to understand my alienation from nature as rooted in the patriarchy and its false dualisms between women and men, nature and culture. My former therapist provided another piece of the puzzle when she pointed to the link between my chronic perfectionism and my inability to control the wind, rain, or temperature.

Avoiding contact with bugs, mud, snakes, and rain (which I refer to as “unauthorized water from the sky”) also bears some similarities to my desire not to raise children. That is, it reflects both my fears and my desire to raise something other than kids and gardens. Kids and gardens (and camping) are great for some people, but they are not what my heart wants to raise.

I want to raise words into books and articles.

I want to raise my voice to help create a more equitable and peaceful world.

I want to raise students into critical analysts of culture and fierce advocates for social justice.

I want to raise relationships into loving communities.

May you raise up what your heart yearns for, while I do the same—only I’ll do my raising up primarily indoors.

 

 

 

 

Hallways, HIPAA, and the Herds

During one of many hospitalizations, I lay in my bed, running a fever and too distracted to concentrate on my school work or anything else. In the doorway to my room, one woman and several men milled about in their white coats. An older man nodded his distinguished gray-haired head to signal to a particular student.

Clearing his throat, the young man began. “The osteosarcoma in 12B was diagnosed via surgical biopsy in February 1989,” he said, and I realized he was speaking of me. “Right distal femur, stage 2b, limb-salvaging surgery May ‘89. Patient has undergone 12 rounds of chemo—uh, methotrexate, Adriamycin, and cisplatin. Readmitted with neutropenic fever. Current treatment is hydration, wide spectrum antibiotics, and acetaminophen.”

I was too weary to object to the reduction of myself to a diagnosis and occupancy of bed 12B, but it rankled. The attending continued to question the student reporting on my case, allowing anyone who was in a nearby room or wandering down the hallway to hear intimate details of my medical history. When the attending was satisfied, he led the way into my room, where he asked me a couple of perfunctory questions before continuing down the hall to his next patient.

Back in the old days, before the passage of HIPAA legislation in 1996 and the implementation of the “protected health information” privacy requirements in 2003, I used to lie in my hospital bed and listen to medical students summarize my case (and those of my roommate and other patients) to members of what my nurses referred to as the “herd”—the cluster of medical students, interns, and residents who roamed the hallways of teaching hospitals on the heels of attending physicians.

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This time-tested case study approach to teaching medicine has much to recommend it, having helped generations of medical students grasp the complexities of differential diagnosis and treatment. The gross violation of patients’ privacy was strictly incidental, of course, an unintended consequence of a proven teaching method. At the time, it upset me far more that I regularly learned things about myself from eavesdropping on my case report than it did that everyone in the vicinity also overheard the herd. Why wasn’t all of that information shared with me directly?

Its teaching effectiveness notwithstanding, the hallway case study method had a dehumanizing effect; it sent a clear signal that patient privacy would be sacrificed to the convenience (and power and privilege) of the herd. That is, the education of doctors became the most valued goal of the ward, rather than the care of patients. We were cases for them to learn from, stripped of names but with many of our most intimate bodily details shared openly—not primarily for our needs but for the student doctors’ benefit.

Many years later, I have more language and concepts available to me to explain why hallway reporting was inappropriate. Of course, this was also back in the day when patients were not allowed to touch the paper medical records that hung on the end of our beds, and it never occurred to me (preacher’s kid and good girl at the time) to peek. Now I wish I had been a wild, outlaw, peeking patient! I’m incensed that I was explicitly forbidden to touch the sacred record of my own illness experiences.

Ironically, I have shared far more intimate details of my life, body, illnesses, and relationships in this blog and in some of the journal articles and academic books I have published than were ever included in the hallway case reports. But that is my choice, not theirs.

I am not angry at the herds who did their best to care for me in the pre-HIPAA landscape. Society’s understanding of privacy has evolved over time, along with our expectations for the practice of medicine. I’m pleased that the case study process now continues with the HIPAA requirement that reporting happens in a conference room or other (mostly) private space prior to the herds rambling down the hospital hallways. I am thrilled that healthcare organizations cannot give out my medical information without my written consent and that, conversely, they must provide me with copies of my records at my request.

HIPAA isn’t perfect, but it did promise patients that the power to decide when and how to share our stories in public venues (including hospital hallways) would now rest with patients rather than with wandering herds. Yeehaw!

 

 

Romance Rethought

I write this in a cramped airplane seat, smooshed between an amicable teenage stranger and Glenn, the love of my life. We are on a return trip to our honeymoon destination to celebrate a milestone, our 25th wedding anniversary. I’m feeling thoughtful.

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Glenn and Laura at the San Jose Women’s March last year

My inner feminist contemplates the heterosexual privilege that enabled us to marry so many years ago when others were forbidden by law to marry their sweethearts. Love is love! At the same time, my mushy heart reflects on what has enabled us to sustain our relationship for so long, with the good times far outweighing the bad.

For me, romance is what keeps love alive, but not the Hallmark variety. Instead, I understand romance in a way that I think will resonate with long-term cancer survivors and people who live with other chronic illnesses (and presumably some non-sick people as well).

Here’s how I explain romance to my undergraduate students. I teach a course called “Gender, Health, and Sexuality,” a more grown-up version of high school sex ed that features research on interpersonal communication about sex and sexual health. One of the exercises I use to help students think about their (possibly unrealistic) expectations of romantic or sexual relationships is having them write responses to this prompt: “Three things Disney movies never taught me about romance…”

Students’ answers are inevitably wonderful, running the gamut from “condoms are messy” to “how not to get pregnant” to “what to do when the prince cheats on you” and “sometimes two princesses fall in love.” I never horrify students by talking about my own sexual choices, even those made 30 years ago, but I deliberately gross them out with a particular story about romance.

A couple of years after the amputation of my right leg, I woke in the middle of the night, sweat beading along my forehead, nausea roiling in my stomach. I panted, trying to catch my breath as I grew increasingly certain that dinner would not remain in my stomach much longer. I reached for my crutches but fell back onto the bed, dizzy and unable to stand up. “Glenn,” I moaned. “Glenn! I need your help.”

“What? Huh?” asked Glenn, groggily.

“I’m going to throw up and I can’t get up. I can’t get my crutches,” I groaned.

My stomach started to convulse, and I slapped a hand over my mouth. Glenn sprang into action, grabbing the waste basket from his side of the bed and thrusting it in front of my face just as I threw up.

Turns out that above-knee amputees, weak with stomach flu, cannot maneuver our radically off-balance bodies (when we aren’t wearing a prosthesis) to the toilet (and even if we could, we certainly cannot kneel or otherwise get close enough for precision targeting of vomit).

After I lay back weakly, Glenn emptied the plastic basket of its vile contents, then lined it with a fresh trash bag, actions he repeated every few hours throughout the night and following day as I waited miserably for the flu to run its course. “Thank you,” I whimpered again and again.

“Of course, my love,” he answered each time.

“Now THAT is romance,” I declare to my students. “That is a love worth celebrating.” I see a variety of responses among the 20-21 year olds. Some nod, getting it. Others look thoughtful. A few look queasy or bewildered.

I ask them what romance means, scrawling key words of their responses on the board—whirlwind emotions, desire and love (or at least like) converging into passion, being swept off your feet, soul mates, being wooed with sweet words and flowers and special nights out.

“And how do you feel when you know that special person is being really romantic, going all out to let you know how they feel?” I ask.

“You feel special,” says one woman softly.

“You feel like they really get you, like they care about you,” says another.

“Exactly.” I respond.

If all goes well, we will celebrate our anniversary tomorrow night by dressing up and enjoying a romantic dinner in an upscale restaurant. I doubt it can compete with the flu for making me feel loved, but I’m willing to give it a try.

The Pleasures of Rereading

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I have read several “best of 2017” book lists as we near year’s end. My favorite escape has always been books, and the calamity of our political climate is such that I have wanted to run and hide in books even more than usual.

I moved a lot growing up, and one of the things that comforted me when I landed in another new town was rereading my favorites, particularly the Little House on the Prairie series by Laura Ingalls Wilder. I identified with the author/heroine whose name I share and with her itinerant childhood, one part adventure and one part anxious longing for a permanent home.

So in the spirit of fostering comfort and respite, I offer a brief list of my favorite rereads of the year, books I have turned to again and again—one fantasy trilogy, one nonfiction book that offers hope, and one affirming tragedy.

The Circle Trilogy (Morrigan’s Cross, Dance of the Gods, Valley of Silence) by Nora Roberts. This is like Lord of the Rings crossed with a romance and an evil vampire saga, with time travel thrown in. As an academic, I am supposed to disdain genre fiction, particularly romance and “chick lit,” but I do not. Although I confess that my feminist sensibilities voice frequent objections, I adore this series, particularly the audiobook version. Six people—a witch, a wizard, a warrior, a scholar, a shape shifter, and a (good) vampire—join together to fight Lilith, the evil vampire queen. It takes three books to time travel, cross the Atlantic to Ireland, journey to the mythical land of Gael, have all three couples fall in love, wield lots of magic, and fight an epic battle, but (spoiler alert!) they save the (admittedly gender-stereotyped) world in the end. Yay!!!!

Help, Thanks, Wow by Anne Lamott. This is nonfiction, a reflection on prayer, which Lamott makes clear can be aimed at any sort of Higher Power, benevolent universe, Cosmic Muffin, or other god figure you like (she is a feminist and a liberal Christian.) She explains that “help!” “thanks!” and “wow!” enable us to reach outside of ourselves and connect with something larger. I have read this on Kindle and in paper, and also have the audiobook version, which I began to listen to on repeat instead of NPR after the political climate grew so grim I could no longer bear it during my morning commute. Help and thanks are self-explanatory, but wow (as a prayer) was unexpected. We say wow when a miracle occurs or we behold beauty, but we also say it as we witness the devastation of Hurricane Katrina or the magnitude of the Syrian refugee crisis. Lamott suggests experiencing our inability to fully comprehend either epic suffering or magnificence is a prayer. She’s irreverent, self-deprecating, and compassionate; she calms me down and offers me hope.

The Fault in Our Stars by John Green. Two snarky teenagers meet in a badly run cancer support group. The disappointing movie reduces the story to star-crossed lovers, but the book is much richer and nuanced, despite its brevity. Hazel shares her favorite book, reread dozens of times, with Augustus, and this sparks friendship, love, and an adventure. I have never read a more accessible, more delightful, or more painful embodiment of the fundamental truth that bad things happen to good people. Eighty-percent of childhood cancer patients now survive, and that means the other 20%—thousands of kids—and their families experience excruciating loss that is magnified by the shame and bewilderment of ending up in the grim minority. Green affirms that life is not fair, that cancer happens to good people and not-so-good people alike, and that many who fight, persist, and pray suffer and die anyway. Kids with cancer are neither one-dimensional heroes nor angels but imperfect, regular people, and they don’t die because their parents didn’t pray hard enough or because of God’s plan. They die because that’s how it goes sometimes. I know this sounds depressing, but it comforts me enormously to hear again and again that cancer isn’t anyone’s fault, that we don’t owe it to anyone to be inspirational, that cancer sucks, and that we are still individuals (not just cancer statistics).

So that’s it, this year’s revisited narrative hiding places that sustained me when the strain of life became too much. May one of them prove to be a shelter for you when you need one.

(I do not receive any compensation for book recommendations.)

Open house, full heart

My back, shoulders, and (biological) foot and knee all ache, and I have a blister on the skin at the edge of my prosthesis. But I’m smiling as I write this. Glenn and I hosted a holiday open house yesterday, and it was lovely.

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It was also exhausting—three whole days of work. I spent a day cleaning with a generous friend who organized all my clutter, a day planning the menu, shopping for food, and digging out holiday dishes and table cloths, and a day cooking, hosting, and cleaning up. Glenn did a ton of work, too, virtually all of the heavy lifting, and was incredibly patient with my control-freakiness. My mother kindly cooked some of the food and made the cookies and frostings for kids to decorate, and several friends helped us cook and serve, washed dishes, and gathered up dirty paper plates and other detritus during the party. And today we will have to spend at least a couple more hours cleaning up and putting things away.

But even with all the work involved, the process of opening my house to friends reaffirmed for me the fundamental truth that humans are designed to live in community with others.

I saw friends from different parts of my life come together in moments of politeness, kindness, and genuine interest in each other. Kids enthusiastically decorated cookies with gorgeous swirls and smears of frosting, brightly colored sugars, and sprinkles. I received more offers of help than I could imagine. I didn’t get as much time to talk to some people as I would have liked, but even that felt kind of good, like I was blessed to have so many wonderful people in one place that I couldn’t get enough of them in one afternoon.

In lieu of gifts, we asked for guests to bring warm socks, and our friends brought dozens of pairs that will be donated to people who are homeless in our local community.

At the end of the party, we lingered with several friends, talking and laughing and sharing our lives. We discussed books we had read recently. We all agreed that the new Thor movie is clever and surprisingly funny, and that it is classier to describe the actor Chris Hemsworth as “easy on the eyes,” rather than “freakin’ hot,” but really, both are accurate. I was able to offer support to one friend who is dealing with some extremely tough times, and it felt good to listen to her and offer her sincere compassion and admiration.

There is something about opening up your house, putting on your festive gear, preparing tasty tidbits, and welcoming your particular assortment of kith and kin into your personal space that feels both vulnerable and gratifying. It is a way of saying to others, this is our home where we are comfortable (which in our case includes a sheen of cat fur on most surfaces), and we hope you enjoy sharing our space for a little while.

Holidays can get busy and stressful, but this party was worth every ounce of time and energy because it fed my soul with human connection. While I am almost always a social person anyway, it nonetheless felt special to have so many people I care about in my home enjoying themselves.

Tomorrow I’ll get back to planning next quarter’s syllabus and working on my latest research paper. But right now I am relaxing with a sense of belonging and hope, a much-needed counter point to the crushing pain of national politics and the depression I have to fight off every morning in the face of each day’s new sexual harassment scandal.

For a brief time, we ate and drank and made merry together, and that is a wonderful thing.