Learning to Speak Survivor Language

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“I refuse to say ‘I’m fine’ when I’m not,” I said, peering steadily into the eyes of a woman who had asked me how I cope with late effects of cancer treatment.

I continued, “People generally don’t want to hear how I really am, so I say, ‘I’m hanging in there’ or ‘I haven’t given up yet’ or ‘I’ve been worse’–every one of which is absolutely true. I am hanging in there. And I say these things to remain true to myself. I spend a lot of time pretending to be more or less fine so that I can work and spend time with friends, but I also speak that tiny bit of truth to validate myself.”

I had just finished sharing a fairly smooth, practiced, and even funny version of my painful cancer and late effects story. I prefaced my remarks by noting that my story had been told and retold many times during 30 years of cancer and late effects. Over the years, I have become quite fluent in speaking the Survivor language.

I have had 30 years to learn how to speak Survivor, the Cancer Late Effects dialect specifically. Many times, I have offered a useful concept and some turns of phrase to others who are learning to speak one of the Chronic Illness or Disability dialects of Survivor language, which share many commonalties with my own. I first learned some of the Chronic Illness dialect from a dear friend who lives with, conducts research on, and tells stories of Irritable Bowel Syndrome.

The relief and joy of hearing your dialect of Survivor language spoken–whether in a personal conversation, a Facebook post or email, or a presentation being given by a stranger in the front of the room–can be immense. It’s empowering to learn that those who have gone before us coined words for our shared experiences. If you or someone you love lives with chronic illness or disability, definitely check out Spoon Theory, for example.

I’m much newer to speaking Amputee and treasure the words I learn in my fleeting encounters with other AKAs and BKAs [above knee amputees and below knee amputees], often in airports. Because of the courage of a number of young women on my university campus, I have learned to speak a limited amount of Survivor, Sexual Assault dialect, not fluently but enough to offer compassion, respect, and resources.

No one likes having to learn Survivor dialects for themselves or their loved one, but learning it is often the difference between surviving or not. Some health care providers are marvelously proficient at speaking Survivor, while others remain stubbornly ignorant of our language, preferring Medical Speak as a defense against our pain–and perhaps their own pain as well. [Over the years I have become more compassionate toward health care providers who–it turns out–are also human. I am trying to learn some of their dialect, too.]

Medical sociologist Art Frank refers to those who have survived serious illness as members of the “community of pain,” and like all communities, we come together across differences to make local knowledge and shared traditions, including language. I had late effects for more than a decade before I learned that term for my continued suffering post-cancer treatment on a listserv for long-term cancer survivors, and the power of just that one phrase to aid me in my journey was incredible.

Being welcomed to our communities and learning our dialects doesn’t make symptoms go away, but it does provide the comfort of being able to express painful experiences in more nuanced and precise ways, knowing we will be understood.

May we all continue to hang in there.

 

Time with My Tribe

IMG_6222I recently returned from several days in the Midwest attending a conference on qualitative research methodology. I saw several friends and acquaintances and met some interesting folks while we discussed possibilities and practicalities of our chosen methods. I gave two presentations and had a blast!

I know—to most people this sounds boring, esoteric, and possibly pretentious. I can’t honestly blame you for rolling your eyes. Yet I find this topic exciting, engaging, even thrilling. I’m happy to be a total nerd about qualitative methodology.

We all have things we are waaaaaaaay into that our friends, family, and significant others cannot even begin to understand our interest in. I think we as a society underestimate the sheer joy of hanging with our peeps, going out with our squad, or geeking out with our tribe. You might be into rehabbing classic camping trailers (another thing I learned about on this trip, thanks to my friend Shirley) or urban farming or chess tournaments or model trains or surfing. Your thing may be as common as football fantasy leagues or as hipster as learning to make peach preserves.

My big thing just happens to be exploring the intersection of poststructuralist and feminist new materialist theory with qualitative methodology. And I cherish the opportunities I have periodically to talk with other people who are also waaaaaaaaay into this—admittedly odd—thing.

Whatever your thing is, finding a group of others who share your interests brings a sense of belongingness and connection with others who don’t need to have the intricacies of your thing explained to them, say for instance, the comic supervillain hierarchy and the relative merits of Dr. Strange versus Wonder Women, which are as unknown to me as my forays into rethinking methods are to many of you.

This conference is a place where my tribe gathers to talk about our work and our lives, our ideas and our plans. We enjoyed meals together, listened to presentations, did a little shopping, ate scones, and stayed up late eating chocolate and talking about everything from the politics of data to the wonders of being a grandmother. I listened with respect to others and they did the same for me.

I left feeling wonderful because I left feeling like I belonged in my tribe.

With studies showing that loneliness is on the rise in the age of social media, the importance of finding one’s peeps and feeling connected becomes even more important. Nothing can substitute for gathering in groups large enough to allow for the development of shared identity and of resilience sufficient to sustain productive disagreements within a tribe.

Back home, two sweet friends who are part of my local tribe smile indulgently when I talk briefly about my conference presentations, happy that I had a good time but uninterested in hearing about the intricacies of my passionate argument for rethinking embodiment in analysis. Of course, I smiled and nodded with enthusiasm as one friend described her gardening plans and another discussed plans for rebuilding the rear deck of her vacation home. They were waaaaaaaaay into their topics. Our local tribe has points of connection and plenty of room for differences.

I am grateful for all the overlapping groups, local and far flung, in which I find belonging.

 

When you start seeing someone new

IMG_0491.JPGMoaning, I threw yet another shirt on the bed and pulled on a purple cotton tank with lace at the hem. I added a purple beaded necklace, the silver bracelet my parents gave me that has the entire serenity prayer written on it in impossibly tiny letters that serves as a tangible reminder than I do not govern the universe, and a long, lightweight white shirt. I hurried to the mirror to examine the effect.

I nodded at my third and final outfit and headed to the bathroom to take my morning meds, disgusted with my own fussing.

I had changed my underwear to a nicer pair in a more subdued color. Doubtless I would have my pants off before too long.

I had remembered to shave and moisturize my one leg. Brushed and flossed, hair blown dry and sprayed, facial moisturizer slathered on. I sniffed under a raised arm — yeah, I already applied deodorant.

I debated changing my shoes but was running too short on time to get out the extra long shoe horn and start the wrestling match with my slightly nicer pair of black flats.

Nerves tightened my shoulders as I drove. We had made arrangements over the phone to meet at a place I had never been. My GPS system spoke to me in its Australian male voice, calmly guiding me closer and closer to this new person.

I wasn’t sure I was ready for a new partner, but the last one had already said goodbye. He was moving to Arizona and our relationship was over. He let me down easy, assuring me that he would miss me and that he still cared about me. He had to pursue his own career, and of course I understood that.

I parked the car and took a few deep, slow breaths. Grabbing my purse from the passenger seat, I shoved my keys into it and walked unsteadily toward the door and my potential new relationship.

To my relief, our initial get-to-know-you chat went quite well after the initial awkwardness wore off. I think we will suit each just fine.

As all amputees know, having to switch prosthetists is a nerve-wracking experience. I had followed my last one from one practice to another office much further away from my home in order to maintain our relationship.

I felt comfortable with Charlie. I felt like he knew me and understood my body intimately, as only a professional who fits a prosthetic socket into the groin of an above-knee amputee can. We had in-jokes about real problems (mechanics) and girl problems (aesthetic objections), and he addressed both with equal seriousness while appreciating my ironic feminist wit.

While I understood in my head that Charlie’s move was good for himself and his spouse, and I wished them the best, I nonetheless felt in my heart the loss of his kind, easygoing nature and vast prosthetic expertise, his quirky sense of humor and sharp eye. It’s difficult enough to endure endless fittings and adjustments, but it’s far worse if you can’t relax and trust the person groping your butt to find your ischial tuberosity.

It felt terribly vulnerable to show someone new my naked leglet (i.e. residual limb or stump), with its uneven folds and assortment of scars, ghosts of surgeries past. It was exhausting to go through the whole story again–the cancer, the chemo, the surgeries, the staph infections, more surgeries, the amputation.

We talked a little about what I do. I made it clear that I am not athletic or outdoorsy and remain completely uninspired by posters of mountain-climbing amputees. Perhaps they could find a poster of a female amputee in professional attire confidently speaking from a podium in a conference room? No?

As I left, I touched my fingers lightly to my bracelet, reflecting on what I can and cannot change. It will take patience and a willingness to be vulnerable for me to build a partnership with my new prosthetist. I’ll miss Charlie but I am ready to start over again.

The Voluntary Pain Rule

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I’ve just officially confirm that it is not just me who thinks that today’s “beauty treatments”—most of which I hear about from my students, who seem to relish horrifying me—are using the amount and quality of the pain they induce as proof of their effectiveness.

Laura Craik suggests that dominant culture has moved from “no pain, no gain” as a mantra for vigorous exercise to using it as a slogan for enduring excruciating facial masks (the videos of which are widely viewed on YouTube), body waxing, anal bleaching, and any number of unpleasant beautifying regimens. The companies selling these products make pain sound not only necessary but desirable.

No. Just no.

Sometime around the 5thor 6thof my 17 surgeries, I formed an important rule that I have lived by ever since. I call it the Voluntary Pain Rule, or VPR. As you probably guessed, it states that I do not voluntarily undergo painful procedures of either the physical or psychic variety, unless they truly are medically necessary.

This means that I do not smear burning acid goo on my face in the hope of having younger-looking skin. But I take my refusal to endure unnecessary pain much further.

I do not have plastic surgery. I do not have tattoos, and my only piercings are one in each earlobe, done when I was 16 years old, long before the implementation of the VPR. Botox shots and Brazilian waxing are out of the question.

I also do not watch horror movies. I’ve actually tried to endure the sociopolitical angst of watching The Handmaid’s Tale, but within 5 minutes I start foaming at the mouth with feminist rage, my shoulders tight as rocks, a tension headache tearing across my temples, and I have to shut it off.

I do not engage in extreme activities likely to result in bodily damage, such as skydiving. Every time I see those “inspirational” posters at the prosthetics shop advertising prosthetic equipment, I shake my head at the amputees scaling icy mountain peaks or hanging from a climbing wall. I avoid places where poisonous snakes are likely to cross my path. I don’t go camping with Lyme-disease-bearing-ticks and the risk of nocturnal visits from hungry bears or other toothy predators. Actually, I don’t camp ever, unless you count staying at motels with no room service.

I have a deep-seated aversion to reading Cosmopolitan (and similar) magazines, the visual and written content of which induce such extreme body-shame that I am left keening, despite my intellectual rejection of cultural misogyny and my cherished belief in the immanent value of bodies of all shapes and sizes. I just can’t even go there.

I also treat pain immediately and without guilt. I take prescription pain meds for phantom limb pain, ibuprofen when I have a headache or my tendonitis flares up, numbing gel prior to Novocain injections before dental work, and 12-hour decongestant when I have a sinus headache.

I’m not immune to temptation, of course. My inner feminist is loath to admit it, but since my early 40s I have longed to have my breasts lifted back up to their previous position, a completely unnecessary procedure (although it may be medically necessary for some women due to back problems or other health issues). This clearly violates the VPR, and I won’t do it.

The VPR also prevents me from doing something creative and liberating, unfortunately. I would dearly love to have delicate floral vines tattooed around my port scars and allograft scars as decoration for the physical evidence of my survival and persistence, like other women with scars have done. But tattooing on the side of and between my breasts and on the remains of my inner thigh would be too lengthy and painful an experience for me.

As with all rules, there must be exceptions. All life involves some risk—simply getting in my car every day involves substantial risk of accidents. I don’t blame people for taking reasonable chances in doing something that they love or value. And everyone gets to determine the acceptable pain levels for themselves. I know my limits.

If I ever become YouTube famous, it will be for cool amputee Halloween costumes or some wild feminist rant; it will not be for enduring voluntary pain in the name of beauty.

 

 

 

 

 

Try, try again?

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This morning I dragged myself into the dentist’s office so she could diagnose the source of the aching pain that has plagued one of my molars for the last few days.

Of course, being high as a kite on lorazepam–quite the niftiest pharmaceutical solution to anxiety imaginable–did facilitate our interaction. I’ve written before that we get no extra credit for suffering, and that needless suffering at the dentist (or elsewhere) should be avoided without shame.

So I was shame-free in my kind dentist’s chair, and as relaxed as possible, when I received a diagnosis and treatment plan. The good news is that the problem is treatable gum inflammation.

The bad news is that if I want to cure the inflammation and prevent it from returning, I need to two things. First, use a prescription mouth rinse and take ibuprofen for 10 days, which is simple enough. Second, I have to commit to using a water flosser after I brush my teeth every night.

Upon receiving this second mandate, which had been cheerfully suggested and just as cheerfully ignored on many previous visits as my gums gradually deteriorated, I felt my back stiffen and my lips press together tightly.

Resentment coursed through my body. Hot on its heels was something far worse–fear, anxiety, and certainty that I will fail. I don’t even want to try, I thought.

This is not due to laziness, of which I freely admit I have plenty. And it does not indicate lack of faith in my dentist’s expertise. Rather, the problem is learned helplessness. If I had a dollar for every time I have replied, “Yes, I’ve tried that already” to well meaning people who tell me about the product or treatment they saw in the news, I could buy a lifetime supply of stool softeners!

I’m well experienced at trying things. If at first you don’t succeed, try, try again, right?

I have tried many different skin care products for the skin breakdown on the remaining part of my right thigh, which gets irritated by my prosthetic leg socket. And I’ve tried a zillion approaches–medical, alternative medicine, and “woo woo” or spiritual–to controlling phantom limb pain and to coping with break-through pain. I’ve tried a dozen remedies for the constipation that results from my continual reliance on pain meds.

I’ve tried different styles of crutches to help the tendonitis in my arms, different systems for attaching my prosthetic socket, different types of shoes, insoles, and shots for the Morton’s neuroma in my biological foot. I’ve tried them all–one right after another.

And you know what the take-away lesson from all of this “trying” is? That most of things I try do not help at all, and the ones that do help somewhat come with side effects that range from unpleasant to intolerable.

It’s enough to make me not want to try, try again. Trying is so… well, to use a bad pun, trying.

Experimenting with this new remedy and that one, over and over again with high failure rates may be exciting or at least intriguing to scientists in laboratories and inventors in startups, but it’s a hell of a way to live. It’s expensive and tedious and demoralizing. It erodes my spirit.

Does this mean I’m giving up? No. I’ve persisted through far worse and I’ll persist through gum inflammation, too. Siting in the dentist parking lot, sipping Diet Coke and sobering up from the lorazepam, I ordered the damn water flosser from Amazon.

I promise, I’ll give it a good try.

Out of my Body and into a Book

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I was in a bad mood last night as Glenn and I sat down to eat dinner and watch the Red Sox game. My phantom pain was terrible and it really put me on edge. So what did I do?

I snapped at Glenn when he tried to offer a kind word of support. And then I felt guilty.

I grumpily moved Buttercup when she tried to settle on my lap, since I couldn’t stand the sensation of her furry little body on my leg. And then I felt terrible as she glared at me from her perch on Glenn’s outstretched legs. Bad cat mommy!

I vaped some legal (in California) marijuana that was formulated for pain relief. Didn’t help.

I took more prescription medication. Helped very little.

I watched the Red Sox pull ahead of the Angels as I wriggled in discomfort, but I couldn’t bring myself to care.

I snapped at Glenn again just for good measure. More guilt.

Then I did what I almost always end up doing when I’m in a lot of pain; I left my body. I could not stay in it one more minute. So I left and entered a book.

My gratitude for books is boundless. Engrossing novels transport me to other worlds–not just metaphorically but physically. I left my body behind as it suffered and became absorbed in the social and political dynamics of werewolves, walkers (shapeshifters), vampires, fae, and, of course, humans. Oh and a sorcerer, too. The relief was immense.

I’ve hidden from tough things all my life by escaping into make-believe spaces fashioned of words, and I know I am not alone in this strategy. Yet I find that when the tough thing I face is not other people or external problems but is instead internal, something different happens to me when I read.

Reading with deep absorption, I disengage from my pain. It’s still there, but I feel it far less. Some research supports the idea that brains process sensory information in specific ways, and some forms of cognitive training that teach people to pay attention to some sensory signals while ignoring others can be beneficial for pain control.

I can engage written stories in a state that feels much like meditation (or what others describe meditation as feeling like; I have never managed to do it). And research suggests that I am correct; reading fiction may have the same effect on the brain as meditation, a practice which helps many people to cope with chronic pain.

I’m back in my body today, teaching, attending meetings, and meeting a friend for lunch. The pain feels manageable, and I breathe through it.

And I’m thinking I owe my ever-patient spouse a big, warm hug.

 

It’s Vagina Time Again

vulvarose1I still get a kick out of saying “Vagina!” out loud, as often as possible, in my vibrant, feminist voice on my Jesuit university campus. I feel subversive! I feel strong!

And I feel sad.

It’s 2018 and legions of women (and a much smaller number of men) are still being sexually assaulted on college campuses every year. April is Sexual Assault Awareness Month, and like many feminist professors on college campuses around the U.S., I am lending my support to various events that provide space to talk, once again, about how women are too often denied sovereignty over their own bodies.

I am sad, and I am angry. #MeToo has brought the issue to the forefront of public discussion, but as far as I can tell, it’s not actually lessening the number of sexual assaults on college campuses.

At SCU, I am the long-time faculty advisor to the Vagina Monologues student organization, and their always amazing performances will occur later this month. I’ll also speak at the Slut Walk sponsored by Feminists for Justice, providing some historical and social context for the event from a women’s and gender studies perspective. I am working with faculty governance and administration to establish a better support system for survivors of sexual assault on campus and to improve our university policies about sexual harassment and assault. I am passionate about this work and happy to be supporting my outstanding students.

But I want so much more for women than just not to be assaulted.

I want healthy vaginas, in the World Health Organization sense of health: “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” And actually, I would like healthy vulvas, healthy clitorises, healthy labias, and healthy anuses, too. I want women to not just be able to make decisions for themselves, but also to experience pleasure rather than shame from their healthy bodies, including–most especially–their entire reproductive systems.

I think of my own body, which has been repeatedly, and sometimes traumatically, violated for my own good by surgeons. Make no mistake: It’s not the same as sexual assault. Not. The. Same. Yet the repeated subjugation of my body to others’ control with painful, long-lasting consequences has left me with psychic scars that often enable me to bear witness to the suffering and survival of sexual assault survivors.

I empathize not because we are the same but because I too have felt violated, shamed, and scared. I listen carefully and I believe.

We still aren’t doing enough to promote health in women, including our vaginas (and including a variety of genital configurations of transpeople and intersex people).

I am going to keep saying “Vagina!” on my campus, loud and clear. It’s not enough, but it remains vitally important that young women and their allies speak out for vaginas–and all their other body parts–without shame.

I’m sad but I’m also hopeful.