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.

On All, Nothing, and In Between

One evening I forgot to put the dinner leftovers (which were cooling on the counter) into  the fridge before I went to bed. The next morning I dragged myself to the kitchen to start the kettle for tea and found the spoiled food.

As I angrily threw the leftovers away, my brain quickly churned out two competing theories about this problem. Either: a) I’m a terrible person who messed up and now has wasted all the time spent shopping for and preparing that food (which would have provide us another meal), and I am stupid and lazy and forgetful, or b) I’m very busy in my personal and professional lives, so the leftovers slipped my mind, which is a completely understandable mistake, and I should just let it go and not let it stress me out.

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Of course other, less extreme options than self-abuse or self-absolution also are possible. Maybe I’m a busy person who should have set a reminder alert on my iPhone, and perhaps I should be less inclined to emotional self-flagellation but was justified in feeling disappointment at the waste of my time and efforts.

I know better than to think in terms of either/or, but I do it frequently. Therapists call this “black and white thinking” and urge people to avoid it. It makes us miserable, and rarely does it lead to truth or good decisions.

Like most long-term cancer survivors with late effects (and others with chronic illnesses and disabilities), I live in the middle between well and sick; I manage my pain and cope with being an amputee as best I can. It’s neither consistently perfect nor perfectly horrible.

Ironically, I teach students to resist such either/or reasoning because it blocks critical thinking. Imagine that I asked you to quickly give me the opposite to the following terms:

White

Good

True

Right

Nonfiction

West

Hard

Man

Win

I’m pretty confident that you said black, bad, false, left (or wrong), fiction, east, soft, woman, and lose. How do I know? Because Western society, particularly the English language, trains us to think in terms of opposites, to see only two instead of a huge range of possibilities. No matter the course I teach—public speaking, gender and sexuality, interpersonal communication—my students learn about resisting binaries (also called dualisms or dichotomies). Binaries are opposites—mutually exclusive, paired terms, such as tall and short or big and small.

This way of thinking also underlies the dominant cancer narrative—triumph or tragedy. You fight the cancer battle as hard as you can, and then you either triumph over cancer with a cure, or you tragically die. But long-term cancer survivors live in the middle between triumph and tragedy. We survived cancer—sometimes more than once—but most of us live with late effects, that is, chronic illnesses and conditions left over after cancer treatment. We are healthy and ill, recovered and suffering, happy and sad.

I know this. Yet I get sucked into binary thinking over and over again. I swing wildly back and forth in judging my actions and others’ as awesome or useless, mean-spirited or innocent, healthy or unhealthy (and conservative or liberal). I forget that the truth is rarely in the default setting of black or white and far more likely to be in some of the many shades of gray in between extremes.

I have asked myself how I end up defaulting to binary thinking so often for someone who not only rejects it philosophically and ethically but also teaches about its limitations for understanding communication theory and practice. Habits, stress, and cultural reinforcement are part of the answer; I just don’t know is the rest.

What I do know is that when we move from either/or to more nuanced understandings of ourselves and our world, we better solve problems on the micro level (I now set a timer if I am responsible for putting cooling leftovers away) and on the macro level (establishing humane healthcare policies and programs).

Caught between a rock and a hard drink

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“Would you like a Diet Coke or some water? That’s all I keep in my office fridge,” I offer, smiling at my friend and colleague with whom I am having a brief organizational meeting.

“No, thanks. I never drink that stuff,” she replies, tilting her head toward the Diet Coke can in my hand and giving it a faintly disapproving glance. “And I brought my water bottle.” I shrug off my defensiveness and smile cheerfully, popping open my Diet Coke and settling in for our discussion.

Cracking open an icy cold can of Diet Coke is how I punctuate meetings, classes, or most any other event. I never did learn to like coffee, and while I do enjoy hot tea, it causes me to have major hot flashes, so I only drink it before my morning shower.

Diet Coke never lets me down; it is my go-to source of caffeine. I love the fizz, the taste, and coolness of it slipping down my throat. It is energy, it is comfort, it is tasty. But does it count as self-care or self-harm?

Any number of students, friends, family members, and colleagues have made gentle and not-so-subtle references to the idea that Diet Coke is not good for one’s health, at least at high levels of consumption. Aspartame (the artificial sweetener) has been blamed for everything from head aches and dizziness to diabetes and depression. One memorable student cried in my office as she warned me that aspartame would turn into formaldehyde in my body and poison me. And more than a few students have teased me about the irony of me teaching them about health communication while drinking my favorite (unhealthy) beverage.

I admit that drinking several cans a day of Diet Coke is probably not the healthiest option, and yet I feel caught in an impossible bind. I drink so much Diet Coke because the daily dose of neuropathic pain medications necessary to control (most of) my phantom limb pain leaves me feeling chronically sleepy and unfocused. I feel more alert after drinking (caffeinated) Diet Coke, and it is a convenient and readily accessible product. Yet I also feel embarrassed and defensive about how much of it I drink.

For the record, significant bodies of research have failed to demonstrate that aspartame has negative effects, except for people with a genetic disorder that makes them unable to process one of the compounds in aspartame. The FDA continues to approve its use. That doesn’t mean that aspartame can’t have long-term negative effects for which we do not have evidence, of course.

When people suggest—implicitly or explicitly—that I should not drink so much soda, I feel a complex blend of emotions: resentment and frustration, mixed with sadness, shame, and defensiveness. I don’t know how else to break out of the mental fog and stay awake. I typically explain that I am so tired that I could lay down on conference table or the floor (or whatever is handy to where I am at the time) and take a nap right at that moment. And drinking Diet Coke helps me stay alert and focused.

Writing this, I continue to feel defensive. I want to explain that other decisions I make are more clearly health sustaining: I eat in a fairly healthy manner and engage in regular, moderate exercise on an exercise bike, both of which help to keep me feeling as well as possible. I drink at least 8 glasses of water per day. Granted, eating less chocolate than I do would be a good idea, but that’s unlikely to happen, and anyway, dark chocolate has antioxidants and other good nutrients.

At this point, Diet Coke remains the best—albeit imperfect—solution that I have found to coping with one of the worst side effects of my medications. It would be so nice if health decisions were clearly right or wrong, healthy or unhealthy, but in real life, coping is almost always more complicated than that.

Must I always be nice?

I’m travelling a lot this fall, and while I enjoy visiting other cities, I am also running a little low on patience. I feel equal parts guilty and gratified about what I did in the airport a few weeks ago.

I had a connecting flight in Minneapolis, an airport with an efficient system of electric carts to transport people with disabilities from gate to gate. Aboard one such vehicle with a friendly driver and a woman with crutches whose right leg was encased in a large black brace, we made slow progress through a crowded terminal. People either didn’t know or didn’t care that our cart was trying to pass them.

charlotte-airport-electric-shuttle-cart_mediumPausing yet again because the masses of people swimming upstream did not respond to her repeated calls of “Excuse me!” the driver shook her head. As we stalled, a tall, white man with curly brown hair walked toward us. He spread his arms wide and leaned over in front of me, violating my personal space.

“Hey, hey, how do I get in on this?” he asked with a snarky smile, waving his hand to indicate the cart. Tired and in pain, I snapped. “Cut off your leg,” I said flatly, looking him in the eye. “That’s what I did.” Then the driver broke through the crowd and I lost sight of the man just as his face registered surprise.

I swear I didn’t plan to say that. It just slipped out. And I feel bad about it… but also good.

I believe that educating uniformed and insensitive people is a far better tactic than sinking to the level of those who think they are clever when they make such unfunny “jokes.” And I typically do try to offer a constructive comment or (if I can manage it) a bit of self-deprecating humor. Whether I want to or not, I represent the identity category of people with disabilities, and I hope to leave a positive impression with strangers, even when I am annoyed or hurt by their insensitivity.

And yet I can’t bring myself to regret my quip. The man was out of line. While I was rude, the insult was fairly mild, and my statement was also accurate (I am an above-knee amputee). I didn’t say anything obscene or make any crude hand gestures. Instead, I asserted myself to indicate that I didn’t appreciate his humor.

I shared this story with a number of friends, all of whom thought my response was spot on. But it nags at me, sparking feelings of guilt over my sharp reply and the possibility that I angered the man, leaving him with a negative view of disabled people. Moreover, I can’t help but consider the gender dynamics of the situation and ask whether he would have felt entitled to make such a “joke” to cart full of men. I seriously doubt it.

I’ve tried to conjure an appropriate response to his intrusive, thoughtless statement, made on the fly, necessitating super-quick decision making. I suppose the defenders of civility would point out that he probably didn’t intend to be unkind or to make fun of my need for a ride. But he clearly meant to call attention to the cart. To what end?

I can’t know what he intended. But I know how his actions made me feel—embarrassed, annoyed, resentful—and then just a little bit proud of myself for pushing back.

The Stress of Pain and the Pain of Stress

Trying not to fidget in my chair, I looked around the table at the other attendees of the committee meeting. My fellow faculty looked at their notes, at the proposed wording of a recommendation to our provost projected on the screen at the far end of the conference room, or at the woman currently speaking. They all appeared to be fine.

I was not fine. My phantom pain had kicked into gear and it felt like a hot needle was stabbing me in my (absent) right big toe, while the top of my (absent) foot felt like it had been badly burned. I concentrated on not gasping or wincing every time the pain spiked, which it did every 15 seconds or so, then relaxed my shoulders gratefully as it receded.

life-is-pain-princess

Side note: I always feel strange describing phantom pain to other people, whether out loud or in writing. I’ve never had someone actually heat up a needle and plunge it into my big toe, nor have I ever had the top of my foot badly burned, nor any of the other bizarre comparisons I reach for—like a really bad sunburn that someone slapped, like an electrical current shooting up my leg, like a knife stabbing the muscle in my calf, etc. So I’m describing things that have never happened in order to explain current pain in a limb that quite obviously no longer exists, and that’s so weird it makes me feel crazy.

Anyway, the phantom pain made it difficult for me to concentrate on or contribute to the meeting, which made me feel self-conscious, frustrated, tired, and more than a little stressed out. I could have left (and no one would have criticized me for doing so), but leaving wouldn’t have made the pain subside, and if I left every activity in which I engaged while in pain, I wouldn’t do much. So I tried to hang in there.

At the same time that phantom pain makes me feel stressed out, I also have detected over the years a definite correlation between being stressed out (by whatever) and an increase in phantom pain. So impending publication deadlines, big stacks of grading, monstrous to-do lists, an argument with my spouse or a friend, and updates on tragedies—from the recent Las Vegas massacre to the ongoing Syrian refugee crisis to the U.S. school-to-prison pipeline—all cause me to be in more pain.

Anyone who lives with chronic pain knows, and probably some others will correctly deduce, that being stressed by pain and pained by stress fosters a terrible spiral of pain that is difficult to stop and incredibly depressing. I feel grateful that medications control my pain as well as they do, so that most of the time my pain is manageable.

In the end, the best I can do is to try to manage stress through moderate exercise, escaping into a book, cat cuddles, and of course some less healthy strategies as well (think binge-watching on Netflix and simple carbs). Or I could always watch The Princess Bride yet again—“To the pain!”

No extra credit for suffering

I’m sitting in my car, sipping a Diet Coke and slowly thumbing keys to laboriously spell out a series of text messages. I am high on 1.5 milligrams of lorazepam, and it will be awhile before I am in any shape to drive. The pizza shop in the same shopping center as my dentist opens in 20 minutes, and I will complete my sobering up process there over an early lunch, enacting my thrice yearly ritual.

More than a decade ago, I went to my dentist to have a filling replaced, and it didn’t go well. By “not well,” I mean that I freaked out, ran to the bathroom, and stayed in there for several minutes sobbing wildly and hyperventilating until I calmed down enough that I could breathe more or less normally. When I emerged with red eyes and a runny nose, my dentist and her staff were extremely kind, ensured that I was alright, and sent me on my way. They had no idea why I was so upset, and I did not explain.

Although I have not been diagnosed with PTSD, I am susceptible to specific triggers that remind me of my many surgeries and painful medical procedures. Lying in the dentist chair, with her poking around in my mouth, I feel intense panic. I never liked dental appointments (who does?) but the stress response worsened with each procedure until I began to have panic attacks.

For years, I tried to tough it out. After all, I’m a long-term cancer survivor—I’m no wimp or whiner! I did not want to admit that I needed help. It makes no sense to me that after the 17 surgeries and all that chemo and years of physical therapy, just going to the dentist triggers a panic attack. I was deeply ashamed.

What changed my mind was one of the contributors to the listserv I belong to for long-term survivors. The phrase she used that really stuck with me is that “there is no extra credit for suffering,” that survivors don’t get any points or rewards or claims of righteous martyrdom when we suffer more than necessary. Nothing good comes from that additional suffering, and quite a bit of harm comes from it—to our bodies, minds, and spirits.

As a professor, the idea of earning extra credit really resonated with me; I want to do a good job managing my pain and various illnesses (that is, I want to earn an A in Health Management) and taking additional medication seems to be a lower quality response, involving less effort and deserving of a lower grade. Certainly, among highly educated people, minimizing medications is respected. I can’t count the number of times I have taken a pill for pain or allergies while at lunch, only to have the person I am with say patronizingly, “I try not to take medications unless it’s absolutely necessary,” implying, of course, that some people too readily reach for medicinal relief. While medications can be misused and abused, they can also be underutilized. And the idea that extra credit is earned by enduring suffering is deeply shaming to those of us who need and seek relief.

This long-term survivor urged me to not be ashamed to take anti-anxiety medication, and further suggested that I listen to something enjoyable on headphones, such as music or an audiobook, while the dentist worked on my teeth. My primary care doctor prescribed me lorazepam to take before dentist appointments or any disagreeable procedures, and I downloaded a wealth of fun audiobooks for further diversion.

The difference is dramatic; instead of holding the chair arms in a death grip, shaking, and feeling the panic bubble up my throat, I essentially float, half-asleep and relaxed while the dentist works. Granted, the process of waiting for the medicine to take effect and wear off wastes half a day, but so what?Report-Card-1

And if my choice not to needlessly suffer through my dentist visit results in me earning a B rather than an A in Health Management on my cosmic report card, I’m okay with that.

What I should have said

I passed an unwelcome milestone of middle age not too long ago when I threw my back out for the first time. I reached down to close the dishwasher door and my back muscles began to spasm painfully. I could hardly walk, it hurt so much to move.

After the pain persisted for several hours, my spouse Glenn took me to the urgent care facility run by our managed care organization. I have been very pleased with my health care team in this organization for more than a decade – which made what happened such a surprise.

After a nurse took my vitals, she asked me to remove my shirt and put on one of their (oh-so-flattering) gowns, and then she left.

I was very pleased when a doctor arrived only a couple minutes later. Following a brisk knock, a woman strode confidently into the room. Shaking my hand briefly but not meeting my eyes, she introduced herself. (I’ll call her Dr. Distracted, not her real name)

“I’m Laura,” I responded, then gestured toward Glenn who was seated nearby. “And this is Glenn.”

“Hi!” she called over her shoulder, not making eye contact with him either. I sighed.

“Hello,” responded Glenn.

Moving rapidly to a computer screen, Dr. Distracted sat down and proceeded to scan my records. “So what brings you in today?” she asked.

“I think I threw my back out. I reached down to grab the dishwasher door, and my lower back started to spasm, and it really hurts whenever I try to walk or even move at all.”

“OK,” she answered, sounding distracted. She continued to stare at the screen in front of her. After a minute of silent reading, she added. “You seem to be on quite a bit of pain medication already.”

Was I imagining the hint of disapproval in her voice? Taking a deep breath, I nodded. “Yes, that’s for the phantom pain.”

“Phantom pain?” she asked, her voice sounding both bewildered and skeptical. Finally she looked me in the eyes. “Phantom pain where?”

I stared back at her incredulously. Not even trying to hide my frustration, I replied, “Um, in my missing limb?” With a flourish, I gestured to my full leg prosthesis, clearly visible in the harsh fluorescent lights.

Dr. Distracted looked at my body. “Oh,” she said. “I didn’t notice.” I glanced down at the purple and fuchsia striped pattern on my socket, the gleaming titanium knee joint, and the glossy black ankle of my prosthesis. I looked back at her, my eyebrows raised.

“Well, that’s a good thing,” she added. “It’s good that I didn’t noticed that about you.” She didn’t explain why, but she didn’t need to. I knew what she meant.

I weighed the value of educating the doctor against my urgent need for pain relief, and the pain won. I rolled my eyes at Glenn but declined to comment. I left a few minutes later with a photocopied sheet of back exercises and prescriptions for a muscle relaxant and an anti-inflammatory.

The list of ways in which this doctor annoyed me is extensive—no eye contact with me, not acknowledging my spouse, infusing her voice with skepticism when discussing my pain and medications, and then defending her failure to be even mildly observant by framing my disability as a stigma that I should be glad she hadn’t noticed.

So in the spirit of every patient who has ever figured out on the car ride home just what she should have said, here’s how I wish I had responded to this doctor:

“It’s hurtful that you would talk to me this way. The only reason it would be ‘good’ that you didn’t notice my disability is if that disability is something bad or embarrassing. I don’t need or want to hide my missing limb or my prosthesis. It is not a compliment to tell a patient that you didn’t notice something that is not only clearly visible but relevant to my diagnosis and treatment. And it’s not appropriate for you to express skepticism about my pain or medication needs when we have never met, and you don’t know my medical history. If something doesn’t make sense to you, please ask me questions respectfully, and I will do my best to answer them thoroughly and honestly.”

Human-in-progress

I woke up this morning to my alarm, which also functions as a signal to my big, fluffy cat Westley that mom is awake. He walked up my body and flopped across my chest, purring and demanding to be petted.

My first coherent thoughts were—in this order—“Ugh, fur in my mouth!” and this quote: “If you always do what you have always done, you will always get what you always got.” This is a favorite saying in the addiction recovery community, also expressed as the definition of insanity, that is, doing the same thing over and over while expecting a different result.

I have no idea why this idea popped into my just-waking brain, but I have been thinking about it all day. This in turn sparked a line from one of the prayers of confession in the United Methodist hymnal that I grew up with, a good, generic statement that certainly applied to me every week: “We have left undone those things which we ought to have done; And we have done those things which we ought not to have done.”

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I feel like this should not still be true all these years later. I should not keep doing the same things and expecting different results. And I should not spend each week doing things I shouldn’t do, while also not doing things I should do. Even though I no longer attend church, I notice the same patterns in my behavior and my reluctance to change my habits. I’m not alone; behavioral scientists have various explanations for why humans so frequently “do what we have always done.”

But what about those of us who have survived/are surviving life-threatening illnesses? Aren’t we supposed to know what is really important now? Isn’t illness supposed to have taught us to embrace each day, smell the roses, grant forgiveness, dance like no one is watching, and (presumably) stop expecting different results and leaving the important stuff undone?

Speaking for myself, I’d have to say that a year and a half of cancer treatment and 27 years of late effects treatment have not succeeded in getting me to dance very freely. I say (and mean) “I love you” a lot and sometimes sniff the flowers between my back door and my car. But I’m not so good about changing bad habits, nor in prioritizing my tasks each week (so I can get more of the things done that ought to be done), and I tend to work too much and not draw good boundaries around my down time.

This is not to say that I haven’t learned anything positive from cancer and late effects—I have, but that will have to be addressed in another post.

I still struggle with the dozens of small choices I make each day, the patterns I allow to cement, and the habits I refuse to do the hard work to change, even when they are hurting me. I procrastinate, necessitating wild binges of work before conference and publication deadlines. I don’t prioritize my creative work over my endless emails. I perseverate over relatively small political problems at work. I beat myself up whenever I gain weight. I pick up takeout on the way home when I’m tired instead of chopping and cooking fresh vegetables.

You may have had a big “ah ha” moment when you got sick or when you endured some other crisis. But I did not. And I suspect many other long-term survivors either didn’t or did initially but the change wasn’t sustainable in regular life. If anything, I learned during cancer to be even more stubborn, which is good when you have to balance chemo and college but bad when you are trying to let go of bad habits that do not serve you well.

Long-term survivors of cancer are still humans-in-progress, just like everyone else. We didn’t achieve enlightened perfection when we survived; we became more fully human. At least for me, being fully human means that the compassion and love I feel for my friends, family, and local and global neighbors are tempered with stubbornness, procrastination, too much chocolate, and a tendency to push the snooze alarm while my cat purrs.