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?

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.

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.”

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.”

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.

 

 

 

Last week I wrote about being a story-gatherer; strangers in airports, grocery stores, and coffee shops see my survivor body and then share their own stories of illness and loss. I gather a lot of these stories and then wonder what to do with them.

During the past week, a few friends who have experienced pregnancy have told me that being visibly pregnant confers the same (presumed) obligation to listen to stranger’s stories of pregnancy and difficult childbirth. Having never experienced pregnancy, I had not thought of the similarity of the implied agreement to listen to others’ labor and delivery stories to the responsibility that I feel. But it makes sense; in both of these circumstances, strangers choose us based on their interpretation of our bodies—theirs pregnant, mine as an above-knee amputee—as capable of understanding their suffering.

Witnessing another person’s story of suffering is a profoundly ethical act, and I try to always be a compassionate witness. Yet I am still left with the question of what to do with the stories I gather.

As you may know, in my other life I am a professor whose research focuses primarily on communication in healthcare. And I have a lot of friends whose research is in related areas of communication. Over the years, I have told many of them about my embodied story-gathering, to see how they would respond.

I told my friend Carolyn, and she said, “These people have trusted you with their stories. It is your sacred responsibility to share them with the world.”

I told my friend Kathy, and she said, “These people have trusted you with their stories. It is your duty to keep their secrets and not share them with anyone.”

I told my friend Bob, and he said, “These people have trusted you with their stories. You should carry brief informed consent forms with you everywhere, and when they start talking, ask them if they would mind signing off so that you can share the stories.”

So then I told my big brother—a social worker, counsellor, and adjunct lecturer, and he said, “These people have trusted you with their stories. You can do whatever the hell you want with them! You didn’t promise them anything. You don’t even know their names.”

With no consensus on what I should do with others’ stories, I wonder: Whose stories are these now? What might be their purpose(s) in telling me? Who benefits from sharing them? If I were to share them, in what format could that or should that happen?

I have never been shy about writing and speaking about my own experiences with cancer and late effects, but it feels different to me to share stories given to me by others. Last week I shared the story told to me by a man in an airport who was grieving for his wife, and I feel perfectly okay about posting it—I didn’t include any identifying information, and I did my best to portray the man with dignity. But there is a lot more I could do with these stories.

When I am wearing my researcher hat, this process is more straightforward (although imperfect and guided by careful ethics protocols). My research participants are volunteers, and I go to great lengths to ensure that they feel as comfortable as possible when interview or observe them. I deeply appreciate being entrusted to make sense of and share their experiences, and I generally feel confident doing so.

I do not think that it would be unethical for me to share the stories I gather in my everyday life, but I also have a sense that my role may be more of a story repository and less a teller of others’ tales.

What do you think I should do with the stories?