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 before 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.

 

 

Having cancer surgery during pigeon mating season: A true story

Pigeons mate during spring; in Massachusetts, the season of pigeon lust begins in early May, a fact I had been unaware of until I had cancer surgery.

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Here is a funny moment from when I had the first of the “limb salvaging” surgeries on my right leg to remove the tumor and insert a bone graft and metal hardware. It was 1989 and I was 20 years old.

My experience with that surgery was complicated by the randomness that resulted in me having a hospital roommate named Louise. She was a white lady in her late 60s and what my nana would have called, “quite a character.” Louise routinely joined my conversations with visitors uninvited, interrupted me when I was reading, watched TV all night so I couldn’t sleep, and offered her opinions on anything and everything to anyone who would listen. I did my best to be friendly at first and then resorted to being as civil as possible as I grew more and more exasperated.

But one afternoon, Louise made me laugh so hard that I will never forget it. I was reading the hardcover copy of Mitla Pass that my father had brought me when Louise started another of her diatribes.

“Oh my Lord would you look at that! Oh boy, oh my Lord, would you look at this?!”  I looked over at Louise, but I could see nothing out of the ordinary. I rolled my eyes and refused to encourage her by asking what she was so excited about. I tried to return to my book.

“Oh my LORD, those pigeons, look at this, would you look at THIS!” She jabbed her finger toward the window, and I shot her an annoyed look.

Louise shook her head, outraged. “Look at this, I can’t believe it, I can’t BELIEVE it! Can you believe this? I’m trying to eat!” She waved her hand at her lunch tray and looked at me indignantly, expecting me to join in her disgust.

I had no idea what she was talking about, and I didn’t care. I tried again to ignore her, but she ranted until finally I gave up.

“What are you talking about?” I asked with a sigh.

Gratified that she had my attention at last, Louise continued shouting, “You know what this is?  It’s progo! Pogo! What’s that called? Porno! It’s pigeon PORN!” I started to laugh as Louise waved her arms in the air, gesturing towards the window emphatically. “I said to Eddie—he says I’m as naive as they day I married him—but I says to him, how can they do it in all those positions? You on top of me, me on top of you, side-by-side, but now I’ve seen it all—look at those birds! NASTY birds, why don’t you go home?”

Through my laughter, I squeaked out, “The balcony outside our window probably is their home,” but she ignored me. It occurred to me that I ought to take notes in my journal, and I tried, but my laughter made it difficult.

Undeterred, Louise continued. “Go home! I wish I had a stick! If I was on a street corner and I saw two dogs doing it I would just walk away, but I can’t get away from this! I shouldn’t have to watch this!” Louise turned to watch me as I held my belly, gasping for breath as I continued to laugh. “Go ahead and laugh you! Go jump in the lake! I wish these birds would go jump in a lake too! Look at that, he’s right on her! Don’t they get tired? How long can they do it anyway? He’s walking away—good. Oh no, he’s BACK! Would you look at them go?! I shouldn’t have to watch this kind of stuff! Stop laughing! This is awful! Oh look, there’s another one! Are they going to have a three-way thing!? Ah, they are flying away. Good. Go home!”

A few minutes later, a doctor came in to examine Louise’s leg, and I was still laughing. The doctor kept missing Louise’s comments because she was so busy staring at me, presumably trying to figure out what was so funny.

Furious that she did not have her doctor’s undivided attention, Louise demanded, “Just ignore her, doctor! She’s just, well, just ignore her!”

I subsided into giggles, feeling grateful to Louise for the first (and only) time.

In the Still of the Night

One… two… three… four… five… six… seven… hiss… I sucked air through my teeth as the pain hit, slowly releasing my breath as the pain receded. I slowly counted again, knowing that the waves came about every seven-eight seconds.

One… two… three… four… five… six… seven… hiss… the pain broke over me again.

stars-in-the-night-skyLast night was bad. The phantom pain ravaged my missing leg. I managed to fall asleep, but then I woke up and couldn’t go back to sleep for a long time, despite taking a sleeping pill earlier.

I struggled not to tense the muscles in my leglet (stump), since that only made the pain worse, but it was almost impossible not to brace myself as the waves of pain hit, over and over again in the quiet darkness.

My phantom limb buzzed and twitched and hurt, a real, living part of me, even though it is gone. Tonight’s pain manifested as searing electrical shocks that cramped and burned across the top of my foot and ankle.

Glenn lay sleeping next to me, his warm back solid and comforting. On the other side, my cat Westley curled up with his head resting on the edge of my pillow, snoring softly. I listened to Glenn and Westley’s stereo breathing, each following his own rhythm, as I panted through the pain. Their syncopated breathing was adorable but insufficient to calm my whirling brain.

Nothing is as lonely to me as lying awake enduring waves of pain.

For a time, I practiced my gratitudes, not to deny my pain but to build a loving context for it. I am grateful for my warm, safe house. I’m grateful to have enough money to pay my bills, have a reliable car, and go to Maine every summer. I’m grateful to have a good job. I’m grateful for Glenn and my friends and family. I’m grateful for Westley and Buttercup. I’m grateful that I can afford to travel to professional conferences. I’m grateful for purple scarves and Diet Coke and dark chocolate with salted caramel and my new book on embodiment.

Sighing, I tried to turn on my left side; I prefer my right but can only lie on that side when the phantom pain isn’t bothering me. Lying on my right side squishes my leglet, and that intensifies the phantom pain.

After turning on my left side—slowly and carefully, taking great care not to disturb Westley, like a good cat mom—I then went through a series of twitches and adjustments to my leglet so that my phantom limb could settle comfortably.

As it inevitably does, my mind began sorting through the events of the day and the previous few days to figure out the genesis of this painful episode. Is it because of the travel and jet lag? Is it the stress of the committee work and writing deadlines and conference presentations that are due next week? Did I walk too much or not ride my exercise bike enough? Did I stay up too late the previous night? Is it the Diet Coke? The questions all circled back to one question: Is the pain my fault?

I breathed slowly and deeply, exhausted and needing another distraction. I tried singing in my head a psalm put to guitar music that the leader of my college Intervarsity Christian Fellowship group used to play.

As the deer pants for the water

So my soul longs after You.

I have absolutely no idea why I still remember this lovely song fragment, but it’s one of my go-to ways to calm myself. Every time my brain circled back to various sources of stress—damn, I forgot again to order those tickets!—I restarted the song, hearing Brian strumming along on his guitar.

That stopped working, too. I wanted to search for my earbuds and cell phone to listen to an audiobook, but I knew from experience that this would disturb Westley and likely cause him to leave. It’s less lonely with him there, so I discarded that idea.

Next distraction was making lists. What do I need to get for Thanksgiving dinner? Fresh cranberries, stuffing mix, dried poultry seasoning, potatoes, apple cider. Did I buy stocking presents for the New Hampshire branch of the family? How many book fliers do I need for next week’s conference?

I must have drifted off at some point, because I woke to my alarm clock, tired and cranky. Doing a quick internal scan, I was relieved to notice that the phantom pain had passed for now. I sighed gratefully as I disturbed Westley long enough to shut off the alarm and start the new day.

When your body remembers

Like any cancer survivor, I have a lot of stories—some sad, some infuriating, some poignant. One of my goals for this blog is to share some of my memories of cancer treatment and of the many surgeries and other late effects treatments in the decades since then, which still haunt me in the course of daily life.

Today as I hurried home from the grocery store and rushed to the bathroom, the sensation of my very full bladder sparked this embodied memory of one of the many indignities suffered by cancer survivors. I wrote the story below earlier but wanted to share it in this context.

I remember that I woke slowly, reluctantly emerging from the deep haze imposed by the anti-nausea drugs the nurses give me during each 48-hour chemotherapy treatment. I blinked in the semi-darkness of my hospital room, rubbing my sticky eyes and wrinkling my nose at the omnipresent smell of disinfectant. A sharp pain in my lower abdomen startled me into wakefulness and I groaned in recognition. I searched the bed for my nurse-call button and pushed it. Glancing over at the rapidly dripping IV line, I cursed the need for continuous hydration to save my kidneys from the onslaught of toxic chemicals that was injected in that morning.

The bone cancer had left my right leg a mess of grafts, stitches, and staples; there was no way I could get out of the bed, find my crutches, and hobble to the bathroom without losing control of my bladder. I was beyond exhaustion, and by the time I woke up, my bladder was so full it hurt. I’d have to wait for my nurse, Chris, to bring a bed pan.

10 seconds. Please Chris, please hurry. I must remain absolutely still from the waist down or I’d lose it. I breathed fast and shallow, willing my body to obey.

20 seconds. I tightened my pelvic and vaginal muscles with every ounce of energy I could muster. Hurry Chris, I can’t hold on much longer. This wasn’t the first time this had happened. I recalled the humiliation of wetting my bed on two previous nights, and I fiercely vowed not to fail again.

30 seconds. My legs began to shake and tears welled in my eyes. I was losing control. It wasn’t fair. Month after month I endured the vomiting and the mouth sores and the diarrhea. Operation after operation, painful procedures, and humiliating exams of every orifice filled my days. Every time I thought I couldn’t take any more, something else went wrong. No, I screamed silently, unable to accept defeat. No!

40 seconds. The hot yellow liquid streamed from my urethra without my consent and the searing flames of shame swept over my face. Defeated, I let the tears flow with the urine. My pelvic muscles relaxed gratefully even as my buttocks cringed in retreat from the growing wetness that surrounded them. The acrid smell reached my nostrils and I bit my lip to keep from screaming in shame and frustration.

Chris walked in moments later and asked cheerfully, “What can I get for you, honey?” Seeing my stricken face, she immediately walked over and took my hand. “What’s wrong?”

“I-I wet the bed,” I said, hanging my bald head to avoid meeting her eyes.

“Oh,” Chris said casually. “No problem. Let’s get you cleaned up.” Chris disappeared into my bathroom and returned with a damp wash cloth. “Can you sit in the chair here and wash yourself while I change the bed?” I nodded gratefully, and she helped me out of bed, wrapping her arms around my shoulders comfortingly and easing me down onto the cool blue vinyl of the recliner.

Five minutes later Chris had stripped, sponged, and remade my bed with crisp white sheets that smelled slightly soapy. She helped me into bed and covered me up with a light blanket. I squeezed her hand in thanks and she smiled. I had been fortunate enough to be assigned to the same ward on almost every hospital admission, and I had become fond of the group of nurses who had taken care of me over the last eight months.

“You know what?” asked Chris as she headed for the door. “I have an idea.” She walked down the hall, and I stared at the ceiling with dazed eyes, pain and frustration gradually melting into tired resignation.

Chris returned with a clean bed pan which she placed by my left hip. Raising the guard rail of my bed to keep the pan from falling off onto the floor, she said, “Now when you wake up again, you just slide yourself onto the pan, and then call me to come get it. See?”

Such a simple solution. “Thank you so much, Chris,” I said, crying again, this time with relief and gratitude.

“Hey, none of that,” she said with mock severity. “I’m supposed to make you stop crying – you want to get me in trouble?” Chris slipped out of the room as I smiled through my tears.

…This happened almost 30 years ago, and my body still remembers.