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!

 

 

Good morning!

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I’m sitting at a coffee shop with two friends, recounting a rushed morning earlier this week when I needed to get ready and out the door unexpectedly and in a big hurry.

“I didn’t have time to take my leg off after working out,” I say. “So I did a quick sponge bath in the sink. It was a mess!” I shake my head, laughing.

My friends laugh, too, knowing that I am referring to my prosthetic leg, and then one says, “That’s not something you usually hear—that you didn’t have time to take your leg off, you know.”

I laughed and agreed that it certainly was not typical. Since then I have had the realities of my morning routine on my mind. Many people with disabilities and chronic illnesses have far more difficult or time-consuming morning routines than I do, that’s for sure. And I don’t want people to feel sorry for me. Yet I do think that most people have no idea what it takes for me, or any other above-knee amputee, to get ready for the day.

Wake up, grab my crutches, proceed carefully to the bathroom to use the toilet, and then back to the far corner of the bedroom. Sit in a chair, unplug both the computerized knee and the air pump on my prosthesis. Pull the blue silicon liner most of the way onto my leglet, smear Vaseline across my skin where I will sweat and the edge of the prosthetic socket will rub, pull the liner up the rest of the way. Add the wick, which is a slick cap for the liner, then slide on the thin sleeve of ridged silicon, lining it up so that the edge covers the wick and makes contact with the liner all the way around, while leaving sufficient loose material at the top to form a seal with the stiff, molded-plastic crown that I slide on next.

Holding all of this contraption together with one hand, stand up on tip toe and endeavor to line up the little knobs on the front and back of the crown with the corresponding holes on my prosthetic socket before pushing my leglet in until the knobs snap into the holes.

Assuming all that works out—it often takes a couple of tries—press the button on the pump embedded in my socket and wait while it sucks out air to create a consistent pressure to hold my socket in place. This usually takes at least two attempts before it reaches optimal pressure, which the pump communicates to me with varying series of beeps.

Next I pull on some workout gear, swallow a handful of pills, and make tea. Most mornings I ride a specially arranged exercise bike for about 45 minutes.

Then I go back to my bedroom, release the air pressure in my socket, remove my prosthesis and all four of the things I wear under it, and crutch carefully to the bathroom again. I maneuver into the shower and onto my shower chair, shower, dry off carefully because dripping water on the floor can make my crutches slide out from under me, and slowly make my way to the chair to repeat the donning of my prosthesis and its accessories.

Of course, that assumes that I don’t need to change my shoes, because that involves changing the shoe on my prosthetic foot before I put the prosthetic leg on. And if I am wearing narrow legged pants or leggings, I need to put those on the prosthesis after I remove the old shoe but before I wrestle the new shoe onto my stiff prosthetic foot. If I forget, I have to take the new shoe back off the prosthetic foot, which involves tugging and pushing with a shoe horn, before pulling on the pants and then attaching the shoe all over again, using a shoe horn and an amount of force worthy of Thor.

The remainder of my morning routine probably looks more or less like other privileged women’s, although I can’t be bothered with make-up.

I am not ashamed of these intimate processes, any more than I am ashamed of other normal bodily maintenance, like using the toilet, washing myself in the shower, or getting dressed. But they are private, and hence not generally something I talk about to others.

Describing the process of donning my equipment and becoming a cyborg again every morning feels strange but also really good. Being honest feels energizing. And like everyone else, I can use all the energy I can get in the morning.

Reflecting on Birth Control in the Happiest Place on Earth

Waiting for a bus to take us from our resort to the Magic Kingdom, I watched incredulously as a 4- or 5-year-old boy ran in circles, squealing and vibrating with excitement. The kid simply could not contain his joy at being in Disney World and beamed a smile while running around and around his own personal orbit until the bus arrived.

In contrast, I sat grumbling about the various aches and pains in my 49-year-old body and the cold temperature. And then I thought: I am so glad it is not my job to keep up with this kid.

As I mentioned last week, Glenn and I celebrated our 25th wedding anniversary at Disney World, the site of our honeymoon. In addition to being very cold, it was also quite crowded because we were there during the lead up to the Disney half-marathon, and the place was swarming with runners and their companions.

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Many of the companions were small children. In addition to the cute and joyful kids, Glenn and I exchanged many a fist bump, congratulating ourselves on our choice not to have children as young ones melted down and threw impressive temper tantrums around us.

Eating a mediocre, Mexican-ish meal in a café packed with kids, I reflected on the deep and abiding gratitude I feel for effective birth control. Birth control pills, IUDs, implants, vaginal rings, and other methods are all imperfect and have disadvantages, but they also have very high rates of success at preventing unwanted pregnancies.

Previous generations did not have the privilege of avoiding pregnancy; most heterosexual couples had sex, and hence eventually bore the natural consequence, i.e. babies. The freedom to choose not to have kids should be protected through improved access to affordable birth control for everyone.

Please note that I am not against other people being parents. If you are willing and able to be a loving and engaged parent, then I wish you all the happiness in the world. I also hold fast to the belief that non parents are not entitled to complain about misbehaving or crying children when they go to fast food restaurants, theme parks, tech museums, or any other place specifically designed for kids.

Like most people, I grew up assuming that I would have children someday. However, during cancer treatment, I experienced the tremendous physical and emotional vulnerability of repeated, painful, and exhausting invasions of my body by chemo, surgery, needles, and all sorts of unpleasant procedures, and I became significantly less excited about having a baby. Then I developed late effects, and the well-meaning but painful violations of my body continued, making childbearing feel less and less attractive.

Treatment renders some cancer survivors infertile, and this is a tremendous loss to them. I have compassion for their loss, even as my response evolved into a firm conviction that keeping my own body functioning is all I can manage, and hosting a fetus is simply not an option. Nor does chasing a toddler appeal to me.

My spouse is what researchers call an “early articulator,” meaning that he announced in the first month of our relationship, at age twenty, that he didn’t want kids, would never want kids, and wasn’t going to change his mind. Later when we decided to get married, he agreed that if I changed my mind when I got older and really needed to be a mother, I could have one child. While he promised to love our child, he also was decidedly unenthusiastic about parenting and wanted me to know that upfront. Fair enough. (By the way, he never did change his mind.)

Would I have wanted kids if I never had cancer? Or if the cancer treatment had restored me more or less to my previous body instead of dragging on into a cascading series of late effects, would I have wanted to experience motherhood? There is no way to know.

What I do know is that today I find my happiness, productivity, and purpose in ways other than parenting. And knowing that, I smile kindly at the watchful parents of the joyful little runner, assuring them that there is plenty of room for all of us in the Happiest Place on Earth, and everywhere else, too.

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.

Resolutions of Truth

As 2017 limps to a close and 2018 looms, many of us have New Year’s resolutions dancing in our heads. Some of them are things to do—this year I will eat more blueberries, kale, and salmon, exercise 5 days a week, keep my desk tidy—and others are things not to do—this year I will not eat so much refined sugar, I won’t press the snooze alarm, and I won’t engage in arguments over trivial matters at work.

Self-improvement resolutions aren’t a bad idea for some people, and they may inspire positive change. Of course, most of us forget our New Year’s resolutions within a few days.

I have been thinking about another type of resolution, however. Not a resolution to do or not do a particular thing, but instead resolutions as statements of (my) truth.

I was a member of the UVM debate team, back in the day (Class of ’91). The debates centered on resolutions, or controversial claims that a reasonable person could consider to have both advantages and disadvantages or strengths and weaknesses. Teams took turns supporting (affirmative) and rejecting (negative) the resolution. For example: “The US Supreme Court, on balance, has granted excessive power to law enforcement agencies.” This is arguably true in some cases and clearly not in others, creating the potential for good debates.

I loved debate—and I married one of my teammates—so it’s no surprise that I have, shall we say, strong resolutions about a lot of social and political issues, and that I am typically quite happy to debate. Admittedly, my ability to engage in productive debate has never been as sorely tested as it has during the 2016 presidential election and its fallout. “Alternative facts” and fun-house-mirror versions of reality offered up as truth by elected officials and Fox “News” exhaust and frighten me.

As I move into 2018, I want to embrace some core resolutions, things I know to be true. Inspired by writer Anne Lamott’s TED Talk, here are some things that I resolve to be true.

Bad things—like cancer, earthquakes, and traffic accidents—happen, often for no reason. Blaming ourselves or a scapegoat feels safer than living with the horrifying truth that we cannot protect ourselves from randomness or chance, but it is not.

Forgive whenever you can possibly bring yourself to do so—not because you owe it to the person or because it will get you into heaven or because your family wants you to, but because the refusal to forgive eats away at our hearts, marinating us in bitterness and pain. (Note: forgiveness does NOT include allowing someone to continue to mistreat you.)

Fur babies are awesome. Yes, they take some care, and some of your friends are allergic to them, and the vet bills can be a burden, but the joy they bring nearly every day cannot be overestimated. Westley and Buttercup make me laugh, offer comfort, help me to relax, remind me to play, and keep me company.

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Books are powerful—novels, creative nonfiction, biographies, memoir, short story collections, scholarly texts—and necessary. Books help us reflect on who we are, who we want to be, and what other possibilities exist. Books are places to rest, to escape, to imagine, to rebuild, to explore, to hope.

The world looks, sounds, smells, tastes, and feels different, based on our social positions. Everyone’s perspective is partial, and members of less powerful groups live with what W.E.B. DuBois called double-consciousness, or their own view of the world and that of the dominant group.

Egalitarian partner relationships based on mutual love, respect, and kindness are possible, and they are also tons of work to establish and maintain.

Language matters. We need to name experiences, claim identities, articulate viewpoints, and express our feelings and desires. Language continually evolves as we speak our truths.

The Beatles lied when they said, “all you need is love.” Love is great, but you also need a lot of other stuff, and love alone does not solve huge problems such as poverty, racism, and drought.

Chocolate is its own, wonderful food group.

Anytime we divide the world up into only two categories (women and men, gay and straight, the 99% and the 1%, North and South, black and white), we are lying, or at least distorting truth. Reality is always more complicated than that.

These are my resolutions, what I believe in my heart, soul, mind, and gut to be true. I want to hold them close in 2018, no matter what happens.

What are your resolutions of truth?

 

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.

You’ve Gotta Friend

I had coffee with friends this morning—well, I had Diet Coke and they had coffee—with whom I have gathered at local coffee shops most Wednesday mornings for the past 15 years. We shared laughter, our to-do lists, updates on mutual friends, and a little bit about the news. I left feeling nurtured and connected, with the added benefit of two recommendations for contractors who clean and repair rain gutters.

I love getting together with these women (and other friends) to share our lives, loves, and relationships, to support each other, and in short, to gather. There is no substitute for sitting, walking, playing, and eating together with friends. I truly value many long distance friendships, and I enjoy keeping in touch via Facebook and email and texting and phone calls. But I crave face-to-face communication with friends. I felt this way before surviving cancer, but recognition of the centrality of friends in my life deepened  during cancer and my ongoing struggle with late effects in the decades that have followed.

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The weekly coffee date grew out of an early morning water aerobics class that some of us still attend. A few weeks shy of my 49th birthday, I am one of the youngest of the group, with the others ranging in age to their mid-70s. This group overlaps substantially with a group that gathers once a month as part of the Dining for Women organization, and also with some of my past and current co-workers. Having friends of all different ages is a tremendous gift.

My older friends have hilarious stories and tales of epic failures from having maintained  relationships—or not—and a wealth of fascinating experiences. Many of them are retired and have time for shopping trips, lunches, or theatre with me, all while continuing to pursue their interests in photography, genealogy, lay ministry, travel, sea turtles, volunteering, church, or good books.

I have friends who are close to my own age, and with them I have the comfort of sharing historical reference points—we remember when Jimmy Carter was elected President and where we were when the Challenger exploded. We enjoy singing along to the hits of the 80s while driving up the highway and groan over pictures of our big 80s hair. Recently we have noticed that we approaching our half-century mark.

And I love having friends who are younger than me. I have two millennial friends who are former students of mine who used to do house sitting and cat care for us when we traveled, and who are now my honorary nieces. They teach me things like what’s new in music and what current slang means. For example, it turned out that “Netflix and chill” does not mean what I thought it meant!

New faculty and graduate students I meet often are 15 or 20 years younger than I am, digital natives who can always seem to get the projector to hook up to my laptop correctly. They understand the academic world in a way that I no longer remember—when theory and methodology and enormous bodies of research still spread out before me as vast, uncharted wilderness to explore, and the language of academia had yet to be absorbed. I recall that I was terrified of learning to conduct my own research and looked with awe at senior scholars whose work I had read, but I can’t remember what the thrill and terror and awe felt like in my bones.

When I hang out with new scholars, I glimpse a time when I was less cynical and less sure I knew my field. I learn a lot from my younger colleagues’ fresh perspectives and keen awareness of the cutting edges of our fields. They ask different questions and make different connections among ideas than I do, and I love that.

My friend Bill Rawlins’ research on communication in friendship across the life span richly describes the rewards and challenges of friendship. “Friendship is part of living well, a part of being able to connect with others, a part of productivity, a part of a good romantic relationship, a part of facilitating community building, and it teaches people how to treat others with respect and joy,” he says. I agree.

I make it a priority to foster friendships both as rich, meaningful ends unto themselves and as sources of help, companionship, and, of course, recommendations for getting my gutters cleaned.

Right back at you

I was zipping across campus a couple days ago on my Ninebot scooter, and a man turned and blatantly stared at me. I don’t know if he was staring at my ride, my prosthetic leg, or both, but his eyes followed me as I approached him and his companion, and he turned his head to watch as I passed.

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This isn’t new. I get stared at a lot, like anyone with a visible difference. Usually it doesn’t bother me; occasionally it’s irritating. But I just finished reading a fascinating book that explores the act of staring, so in that moment, I was intrigued with the possibilities of staring.

One of the cool parts of being a communication and gender studies professor is that I get to read a lot of great books and articles. Granted, I’m a nerd who appreciates pretty abstract theory and research. But I also read scholarship that has practical applications for long-term cancer survivors or others with chronic illnesses.

The book is by an amazing disabilities studies scholar, Rosemarie Garland-Thomson, and it’s called Staring: How We Look.

Garland-Thomson talks about psychological research on staring that explores what types of things draw people to stare and for how long, and what motivates staring. Such researchers focus on the starer and the act of staring. The act of being stared at, however, has traditionally been thought of by researchers as something that happens to people, who are basically seen as objects of others’ reactions.

Garland-Thomson asks readers to instead imagine staring the other way around, from the perspective of the one being stared at. She reframes staring as a relational moment, that is, as an interaction between two (or more) people, rather than one person and an object. People who are being stared at are usually well aware of it, and they have some ability to manage such encounters. And in some situations, she says, people may even invite or encourage others to stare.

I like the idea that those of us being stared at also have something to say about the topic, and while we can’t completely control when and how staring happens, we can and do make choices about how to participate in such encounters. We are not objects.

Sometimes I smile at people who stare at me, sometimes I ignore them. I have glared at people whose staring included an expression of disgust or contempt. I have rolled my eyes. I probably look hurt or embarrassed when someone says something rude about me to her or his companion.

During one memorable staring moment, a good friend of mine in graduate school lost her patience with watching me endure being stared at. We were in a restaurant, moving toward a table, and a young man whose table we passed not only stared openly at my leg but craned his neck to get a better view. As I slid awkwardly into the booth, my friend turned and saw him still staring. She marched back to him and asked sarcastically, “Do you want me to have her come back so you can take a snapshot?!” He hastily looked away, and she rejoined us. Her solidarity meant a lot to me, even though I generally don’t encourage my friends to confront others on my behalf.

Occasionally when I am obsessing about which shoes to wear or whether I remembered to shave my leg or if a particular skirt fits well, Glenn will say, half in jest, “No one is going to notice anyway—they will be too busy staring at your prosthesis to pay any attention to that.” And I know he is right.

What is important is to remember that (the meaning of) staring is not only in the eye of the beholder but in those who are beheld. Lots of people live with visible differences, for whom being stared at is just part of our everyday lives that we actively engage with, often effectively and even creatively.

Now when I zip or limp by those who stare, I will try to think not of what my body means to them, but what they mean to me, and what we could mean to each other.

On a Wing and a Prayer… or a Paperclip and a Hair Tie

I just returned home after the annual convention of the National Communication Association, which was held in Dallas. On the third day, I encountered some technical difficulties, and I muttered to myself,  “#amputeelife, #thingsthatbipedsdon’tdealwith.” I felt very hip and millenial to have had a thought in hashtag form as a 48-year-old Gen-Xer, even as I endeavored to solve the problem.

That day I wore a dress with black thigh-high stockings. The stockings have stretchy bands at the top that keep them in place. The band on my bioleg (AKA left leg, original equipment) worked just fine. The band that I had pulled over the prosthetic socket that encases what’s left of my right leg would not stay in place on the super smooth surface of the socket, however.

Side note—it is not unreasonable to wonder why I bothered to put a stocking on my prosthetic leg, which is not covered with flesh-simulating foam but rather appears from the ankle up as a collection of mechanical parts. I do this mostly for symmetry. I have a white-person-colored, rubber foot cover on my prosthesis (so that I can wear the same size shoe on both feet). If I don’t cover the rubber foot when wearing my more formal shoes (read: black flats) and a black stocking on the bioleg, the peachy-beige rubber foot glows weirdly and contrasts horribly with the black shoes and black stocking-covered leg, particularly in fluorescent lighting. On a more practical level, it is also a lot easier to cram my prosthetic foot into the shoe when the rubber foot’s nonskid surface is covered with the smooth stocking.

Anyway, after the stocking slid down yet again, I rather impatiently yanked it up, with perhaps more force than necessary.

Riiiiiiiiiiippp! Uh oh.

The band lined with gripping material remained in my hand, but it was no longer attached to the stocking. Sigh. With no time to go to my room for another stocking, I dug through my computer bag, coming up with an elastic hair tie and a paper clip. I slipped the hair tie over my shoe and up my prosthetic “ankle” and “knee,” gathering the stocking material tightly at the point where the computerized knee joint attached to the socket, and I twisted the elastic tie as tightly as possible, securing it with the paper clip.

Miraculously, this fix held—see photo below—and my dress was long enough that it wasn’t visible. I told a friend of mine, and she pronounced it a “MacGyver moment,” referencing the TV show of our teenage years where the hero improvised highly improbable mechanical solutions to problems, a feat accomplished every episode via video montage with a signature soundtrack.

stocking rigged

At that moment, it occurred to me that the creative work-arounds necessitated by my fairly regular bodily and device failures have often, although certainly not always, held well enough—both of the paperclip variety and of the extensively engineered titanium implant or computerized prosthesis variety. I reflected on the ingenuity needed to solve these big and little bodily failures, and it occurred to me that this is pretty much what it means to be a scholar.

Yes, I sometimes bemoan the number of mundane details, pains, and bodily annoyances I must deal with due to my particular body (while also acknowledging that there are many daily hassles, microaggressions, and burdens that my privileges enable me to avoid). But I also realized that my creative efforts to solve daily problems, cope with as much grace as possible, and even keep a stocking in place, actually provide me with great practice for addressing challenges in my research and writing.

How do I work around this barrier? How do I compensate for this missing piece? How do I forge connections where none exist? How do I explain this need to someone who has never experienced it? These are the same questions that scholars face, and I relish the challenge of constructing interesting and useful responses through my research.

Back home from the conference and comfortable in cotton socks and sneakers, I look back on a successful conference where I presented new ideas, met with both junior and seasoned scholars, enjoyed time with friends, and engaged in outside-the-box thinking to keep my stockings up.