Call and (You Must) Respond: Disability and Sought-After Silence

Disabled people commonly report feeling silenced and marginalized within mainstream U.S. culture, in the media, education, and medicine. Disability activism is premised upon the notion of speaking up for ourselves about how we live and how often we are excluded, silenced, and placed outside of the largely unstated but consistently reinforced norms for bodily appearance and function.

Nancy Mairs, a poet and essayist who lived for many years with multiple sclerosis, claimed in her amazing essay, “Carnal Acts,” that “speaking out loud [about her body] is an antidote to shame.” I believe this with my whole heart and embrace it, even down to my vanity license plate.

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But I also get weary of speaking to account for my embodied being. Sometimes I would rather embrace silence when it comes to my disability. Maybe folks could just talk about the weather instead of engaging in a running commentary about my bodily differences? But just typing that  makes me feel anxious; it’s just not nice to refuse to answer other people’s questions.

On reflection, I came up with four types of interactions in which my body prompts others to behave in ways that seem to necessitate a meaningful response from me, even if I do not wish to perform “disabled activist” in that moment.

First, I respond to satisfy others’ curiosity. I’m in Starbucks waiting for a friend. It’s a lovely morning, and I’m wearing khaki walking shorts and a lavender cotton shirt. A dark-haired man walks in with two little boys, probably about four and six years old. The boys stand in line wriggling and bouncing impatiently. One of them catches sight of my shiny titanium prosthesis and grabs the other boy by the hand, dragging him toward me.

“Hi!” I say brightly when they arrive at my table. The boys smile back but say nothing, staring openly with avid curiosity at my prosthetic leg. “Pretty cool, isn’t it?” I say. “My leg has a computer in it and sensors and lots of metal parts.” I lift my prosthesis up and point to the computerized knee joint. “This is the computer. It has a battery. I have to plug in and charge up every night, just like your iPad.”

The boys’ continue to stare silently. “Want to touch it?” I offer, using my hand to extend the lower portion of the prosthesis toward them. The older one looks me in the eye hopefully. “Go ahead,” I urge. He reaches one finger out to stroke the smooth, cool surface, then smiles. He gently pokes the hydraulic mechanism and I giggle. Their adult finally shows up with two large go cups. I smile at the man, and he smiles back, nodding in acknowledgment before herding the kids outside.

I wasn’t upset at the boys, nor I could I remain silent in response to their genuine interest. But their curiosity signaled (albeit unintentionally) the novelty of my cyborg body, reinforcing just how far outside of normal the kids considered me.

Second, I respond to others’ concerns that I have failed to appear sufficiently feminine. Often these sorts of comments are in the guise of benevolent attempts to “help” me. For example, early on after I returned to work following the amputation, one of my students, overcome by the appearance of my prosthesis, tearfully offered to have her sorority host a fundraising event to purchase me a new prosthesis that looked “like a real leg” (clearly lack of funds was the only scenario she could imagine). Similarly, at a holiday party, an acquaintance asked me why my insurance wouldn’t pay for a “full leg prosthesis.” I assured her that my prosthesis reflected state of the art technology. She pointed to my narrow metal ankle and insisted, “But it looks like that, not like skin.” I end up explaining that the flesh-colored foam stuff looks like a mannequin limb to me (especially on an above-knee prosthesis), and I prefer the sporty, mechanical look to the plastic-y one.

My inability to participate in some social customs also seems to prompt frequent explanation. At a friend’s dinner party, I twice declined wine before responding to the third offer by stating, “I can’t have any alcohol.” This led to a zillion questions about the medications I take for managing phantom limb pain, which don’t combine well with alcohol.

Finally, I find it difficult to maintain my silence rather than explaining when I have briefly and unwittingly passed as more able-bodied than I am by wearing long pants and controlling my limp, before then outing myself. One day I was walking and talking to a university colleague, with whom I am only slightly acquainted, when we approached a set of stairs. Still talking, he didn’t pause before bounding up the stairs while I tried to interrupt him, gesturing toward the elevator.

Of course, I don’t have to respond in any of these situations; I could refuse to answer. I know my reluctance to remain silent when questioned is socialized and influenced by my identity as a white, middle-class woman, for whom responsiveness to others’ requests is often a deeply ingrained behavior. The thought of being deliberately rude when questioned troubles me most of the time.

I want to claim silence as another form of potentially powerful disabled speech, to embrace the freedom to choose not to speak out loud as an antidote to shame but instead (sometimes) to allow my cyborg body to speak eloquently for itself, without shame or obligation to explain.

 

 

When the Universe Stops Bothering with Subtlety

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I’ve had messages sent directly to me from Universe Headquarters before, but it’s been a long time since the Universe abandoned all subtlety and just whacked me upside the head to get me to listen.

Within the last few days, I had three things happen to me that reinforced the message that I need to slow down NOW. It wasn’t until I was trying to breathe through the third one that it occurred to me that perhaps I needed to pay more attention to the wisdom that was trying desperately to reach me.

Message #1: First the air pump on the socket of my prosthetic leg—which creates a suction to keep my prosthesis attached to the rest of me—stopped working properly. It declined slightly in efficiency and then rapidly, refusing to form a solid seal. Thankfully, my awesome prosthetist—shout out to the outstanding Charlie and fabulous Jen at Anchor Prosthetics by the Bay—was able to squeeze me in for an urgent appointment and loan me a spare pump until such time as Venus is in retrograde, the moon is full, and my insurance decides it has all 37 signatures required to buy me a new one.

Message #2: I rode my Ninebot (like a smaller, lighter Segway) over to a meeting across campus. I noticed that it had only 3 (of 8) bars of battery power left, but I figured that it would get me there and back, and then I could recharge it. Wrong. Two bars remained when I hopped aboard. About a quarter of the way back to my office, it went from two bars to none in about ten seconds. The Ninebot started beeping wildly at me and then  shut itself off while I was still riding it. I went flying off and landed flat on my back. My pride was hurt worse than my back, as a kind student stopped to help me stand up. A call to the Communication Department office secured further help, in the form of my awesome admin/goddess Helen, who sent a student running over with the Ninebot plug from my office, so I could recharge my battery in the nearest building until I could safely ride.

Message #3: Hurrying to my car to make an off-campus lunch meeting, I arrived to find that an unbelievably thoughtless, selfish person had parked his car behind mine—with the engine still running and hazard lights on—at the end of the lot, in between two rows of parked cars, effectively blocking four cars from being able to move, presumably because there were no empty spaces nearby. I was incredulous. After testing my capacity for creative constructions of profanity, I started muttering the “serenity prayer” through clenched teeth, demanding divine serenity to accept the things I cannot change. “Yeah, like accepting selfish jerks who park behind my car—who does that?!” I yelled uselessly into my windshield. After laying on the horn intermittently to no avail, I was dialing campus security to request a tow truck when a young man in a suit walked casually out of a building.

“Is this your car?” I screeched at him after he noticed me glaring out my window and made eye contact.

“I only had to run in quickly. Sorry,” he said, not sounding nearly as sorry I wanted to make him be.

So to recap, as I tried to race through my hectic, end-of-the-quarter madhouse of grading, meetings, and numerous deadlines, I found myself unable to pump enough air, out of battery power, and completely unable to move my car.

Hmmmmmmm, I finally thought. Could there be a lesson for me here?!

Slowing down and limiting the number and rate of projects I commit to isn’t my biggest strength, to put it mildly. But even I have limits, and the Universe let me know for sure that this week, I have reached mine.

Time for deep breaths, dark chocolate, gratitude, and, if not serenity, at least some prioritizing of my to-do list.

The Upside of Denial

1425_1“She’s in denial,” my friend said, referring to another woman we were both worried about as she navigated a difficult personal situation. “She’s buried her head in the sand.”

Certainly, indulging in too much denial can be harmful. But denial also has an upside for those of us with late effects or other chronic illnesses. It offers us a break, a time out, a temporary escape from painful realities. Denial enables us to rest and regroup before facing challenges.

I have had 17 surgeries—first to treat the cancer and then to cope with a cascading series of late effects—and it wasn’t until the eighth surgery that I began to have difficulty really deluding myself.

Oh, I’d tell myself. It won’t be that bad. The surgery isn’t fun, of course, but all would be well almost immediately afterward. No worries, as my Aussie friend would say.

This has never been the case for me. Most of the time, after surgery I felt like I had been run over by a truck. The pain, constipation, nausea, limited mobility, and depressive effects of painkillers left me in rough shape for weeks or months.

Even a minor surgery, like having the central line port removed from my chest, left me with such sore pectoral muscles that I could barely dress myself for days. And the surgeon who did the fairly simple, outpatient procedure didn’t bother to read my chart, or at least not carefully. Before I could stop him, he quickly used acetate wipes (to which I have the same allergic reaction as to alcohol) instead of betadine to sterilized my skin, leaving me with a severe, itchy rash blanketing not only the incision, but also my breasts and most of chest for several days.

Despite several terrible experiences, I remained stubbornly optimistic that each time I had surgery I would recover quickly and smoothly, and that the degree of discomfort, pain, and embarrassment would be relatively minor.

I have clear memories of when this changed. It was surgery number eight when my ability to muster pre-surgical denial faded. I wanted badly to have the functional leg that my surgeon promised would be mine after a second bone graft. But the tight ball of dread in my stomach and the tension in my shoulders reflected my body’s keen awareness that before I received any increase in function, I was going to suffer. A lot.

And I did. Since then, I have struggled to pretend that my next surgical experience or other unpleasant medical procedures would be fine.

Over the years, I’ve had a number of mothers tell me that after their babies were born, they forgot about the pain of labor, that somehow the magic of one’s own infant removed memories of pain from their brains and made them unafraid to go through it all again. This sounds like a functional form of denial to me, in the same way that my stubborn optimism let me assume the best prior to my first several surgeries.

If you have to go through something painful, what purpose does fully appreciating how awful it will likely be serve? How does that visceral awareness improve you outcomes? I don’t think it does.

Consider the ostrich. It’s a myth that ostriches stick their heads in the sand when threatened, despite the common expression. Instead, when ostriches sense danger, they lower their heads close to the ground, making themselves less vulnerable and less visible. They don’t stop paying attention to the world; they just assume a more defensible position from which to scan the surrounding terrain.

And that’s how I think we should understand it when those of us with serious illnesses or conditions deny some of the harshness of our medical realities for a little while.

Of course it is not okay to become so delusional that you can’t manage your health and your life. But tucking our heads protectively for a while when we cope with painful health challenges seems to me like a fine thing to do.

 

 

 

Disability + Aging = ???

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I just returned from a trip with my mom to visit my aunts and uncles, as well as a dear friend from graduate school, in Florida. We were having a great time chatting and catching up at a restaurant when I decided to share a story about taking my mom to lunch after an appointment at my prosthetist’s office.

“So I had a hydraulic leak in my ankle,” I began. “And–”

My aunt choked on her drink, mid-swallow. There was a brief pause, and then everyone at the table began laughing. I looked around in confusion.

Still chuckling, my aunt said, “That’s just not something you expect to hear anyone say.”

I smiled. “True enough. It sounds like a car repair or something.”

Surrounded by family and friends, all of whom were retired or near retirement, I stopped to think about how my continual need for prosthetic repairs and adjustments and for managing phantom pain would continue to happen in the context of aging.

I’m 49 years old, a generation younger than my mom, aunts and uncles, and friend. I thought about the health problems that my loved ones face as they age–some serious, some less so–and it occurred to me that my process of aging will (or already does) include aging in the body I actually have, not in a hypothetical body.

This insight may seem obvious, but it points to the difficulty in imagining our bodies in states and contexts that we have not experienced. We can try to imagine ourselves 20 or 30 years from now, but it is difficult to feel what it will be like to inhabit that future, “old” body.

Disabilities and chronic illnesses never remain constant; we have good days and bad days, some symptoms resolve and new ones appear, pain ebbs and flows. And one of the factors that intersects with our current health is our bodies’ aging processes. The damage done to my body by chemotherapy, medications, anesthesia, and surgery isn’t over–it changes and evolves as my body ages.

Proponents of a positive approach to aging advocate for “an appreciation of the aging process. Challenging the longstanding view of aging as decline… [the Taos Institute] provides resources for understanding aging as an unprecedented period of human development.”

I embrace the ideal of appreciating our development throughout the life course, and I see many exciting possibilities for living a good life for however long I have. I admire my older friends and family who cope with their health challenges while also continuing to engage in activities they enjoy.

Yet I can’t help but think about dozens of little things I cope with now that may become really big challenges in the future. How many steps do I have to go up to enter my house?  What will I do if I can no longer take the pain medications I use now? What if I need to have knee replacement surgery or surgery for the painful neuroma in my one remaining foot? What if my spouse needs care that I cannot provide? Will the chemotherapy make me more likely to have kidney failure?

I am searching for the balance between thoughtful planning and needless worry for the likely needs of my future body. As I think about retirement in another 16 years or so, I remain positive but cautious.

I am deeply grateful to be alive and aging, and at the same time, I know that aging in my disabled body will include particular unwelcome challenges, like hydraulic leaks. As long as I am able to keep laughing with loved ones, I think I can handle whatever comes next.

 

Looking to Heroines

Whenever students–usually men but sometimes women–tell me that having a U.S. Congress that is 80% men offers an adequate representation of the population and that our government actions and law making do not reflect a distinctly masculine bias, I respond this way: If Congress were 80% women, our nation would still have problems, but they would be really, really different problems than we have now.

I have yet to have a single student argue that this statement is untrue.

Added to that, Congress is also 80% white, privileging white individuals and communities in government; racial equity in representation would transform our law making processes and outcomes. While Congress still wouldn’t be perfect, it would almost certainly would be more just and equitable.

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I don’t accept that men are innately violent or less empathetic toward the suffering of others than women are, and research conclusively confirms that much of what is assumed to be innate gendered behavior is actually attributable to language, culture, and socialization. For example, toxic forms of (learned) masculinity clearly contribute to the rash of heart-breaking mass shootings in the U.S., which are perpetuated almost exclusively by men.

I have been drawn to heroines my whole life, and I am looking to them now to bolster my spirit during tough times. I don’t discount male heroes; I just don’t seek them out.

The picture above is of two of my current favorite heroines, real life law professor turned Senator, Elizabeth Warren, and fictional female warrior from Game of Thrones, Brienne of Tarth. I keep both of these action figures in my office, and I have been turning to them for a lift when I feel discouraged.

Whether the challenge is coping with huge political turmoil or struggling to get my prosthetic socket on properly in the bleary-eyed early morning, I need symbols that resonate with me. Strong women lend me strength, women leaders help me to imagine ways to act as a leader, canny women model creative approaches to problem solving.

Elizabeth Warren is super smart and eloquent and above all she is persistent as she works to improve our nation. Brienne uses her tremendous physical strength and unswerving loyalty to serve first her king and later her lady and the lady’s daughters. Both of these women defy traditional norms of feminine deportment, crusading for what they believe in.

Symbols cannot substitute for meaningful action, but they can be a very powerful impetus to (and support for) individual and collective action. These two quirky action figures sit alongside photos of friends, family, and cats, making me smile and reminding me of my own strength and courage.

 

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!

 

 

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.