I am thrilled to share that I discuss late effects and life after cancer with Dr. Lynn Harter   (Ohio University) in the first Defining Moments podcast. You can listen to this free podcast on the Defining Moments site or you can download it at iTunes.

I am deeply grateful for the opportunity to share my own story and to describe some of the realities faced by cancer survivors, as documented in survivorship research, including my own.

My message is this: Life after cancer for those of us blessed to survive is not simply a triumph nor is it a tragedy. Instead life is messy and wonderful and awful and joyful and sad. In other words, life after cancer is as complicated as any other life.

Grateful for a cure, long-term cancer survivors often find that cancer has changed their life irrevocably, in both good and bad ways. Late effects–chronic illnesses and conditions caused by chemotherapy, radiation, surgery, and other cancer treatments–may prolong physical and psychological suffering. At the same time, survivors can grow and change and become who we are meant to be.

It’s been awhile since I blogged, as I have been caught up in my other life as a professional nerd who speaks at conferences and other universities about my work on embodiment and crystallization (and most recently data engagement) in qualitative research. Don’t feel badly if you have no idea what any of that means — it’s methodological stuff that absolutely thrills me, even as I leave many of my kind friends and family with glazed eyes and blank expressions.

Nerdy methods stuff is my one of my deepest passions. A methodologist is, in part, who I was meant to be in my life after cancer.

Outside the nerd-realm, I continue to struggle with mobility as an amputee and to cope with phantom limb pain. I don’t let my chronic pain stop me, but it does wear me out sometimes. I feel frustrated, but I also feel hopeful.

I’m grateful to Lynn and Defining Moments for inviting me to share my story and to increase awareness of the challenges and rewards of long-term cancer survivorship.

Moaning, 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.

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.

I 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.

The other day I found myself staring at the toilet seat in my bathroom and realizing it is a lot like my soul.

Weird, right? But hang in there with me for a moment while I explain.

So I’m staring at the worn spot on the right side of the toilet seat before I sit to do my business. As with most—but not all—changes, this one has appeared gradually.

Several years ago, Glenn and I bought a house that is—by California standards—quite old; it was built in 1930. Among the old-fashioned elements is the toilet in the black and white, art deco, master bathroom. It has a heavy seat that is definitely not plastic. It is, or rather was, white.

I generally don’t pay a lot of attention to toilet seats, but awhile back, I noticed that the white toilet seat had a brown discoloration in one spot. Given the association between that particular color and the purpose of toilets, I grabbed a sponge and a spray bottle of cleaner and endeavored to scrub the seat clean, but without success.

Over time the discolored area grew and darkened, and I finally realized that the hard, epoxy-coated socket of my prosthetic leg hits the seat in that same spot every time I use the toilet. My cyborg body is slowly wearing the smooth white finish off that area to reveal the underlying material, which is brown.

I searched the Internet to find out what toilet seats are made of—ostensibly because I am an insatiably curious researcher but really because I wanted to avoid some work—and have deduced that this one is likely made of “medium density fiberboard,” which is a molded mixture of resin and recycled wood and is the heaviest type of toilet seat.

I see this worn spot on my toilet seat as I begin and end each day, and often several additional times in between, if I happen to be home all day. My initial response was to dislike this worn spot as yet another annoying sign of my embodied difference.

But I have gradually come to view that worn spot on my toilet seat as a scar, a testament to the notion that I keep going even as some parts of me show significant wear and tear. Their surfaces don’t look tidy, but both the battered seat and my scarred soul still perform their essential functions quite well.

I’ve had this metaphor swirling around in my head for days now, alternately depressing me with its message of slow, relentless disintegration and energizing me with its perseverance. In my soul—the deepest part of myself—I know that the wear and tear of living with late effects, especially chronic pain, will not defeat me. My gratitude for being alive does not make these problems go away, but gratitude buoys me as I cope with them well enough.

I cannot help but notice the “both/and” quality of the toilet seat—it is both scarred and remarkably resilient, worn and stubborn, imperfect and effective. Kinda like me. And everyone I care about. And most other people as well.

Here’s a crazy thought: this probably even applies to the people at the other end of the political and ideological spectrum who drive me crazy with their Facebook posts and memes and Fox News segments. Presumably they all cope with deaths and divorces and sick kids and bad days at work and money problems and chronic illnesses, just like the people of whose voting records and advocacy I approve. And maybe they end up both slightly dented and strong, too, just like me.

Of course, I could replace the toilet seat with a new one that would hide the evidence of the daily friction between my prosthesis and the seat and between my soul and suffering. But it would be, at most, a temporary fix.

Soon enough, the new seat would start to wear and gradually lose its smooth finish. For now, I think I’ll leave the imperfect seat where it is and embrace the metaphorical moment when I sit and embrace my resilient, stubborn, cyborg self.

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

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

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

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

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

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

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

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

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

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

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

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

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