Matching dishes, mismatched legs

IMG_1926I grew up in a series of houses in which nothing matched. We had an odd assortment of dishes and glasses, towels whose colors spanned the rainbow and whose years of service varied widely, and furniture that was either given to us or was purchased a piece at a time as needed. It’s not that we didn’t have enough money; we were comfortably middle class. My thrifty New England parents just didn’t believe in replacing appliances that worked, plates and towels that remained whole, or functional couches with worn spots.

In response to this upbringing, I positively adore matching things. I’m a little obsessed.

In the 80s I had a pair of slouch socks to match every outfit. I’m incapable of wearing two different shades of black together. All of my dishware is (relatively inexpensive) cobalt blue Fiestaware–three sizes of plates, six different shapes of bowls, two types of mugs, and lots of serving dishes. I fully recognize both the financial privilege the enables me to worry about something as inconsequential as color and the essential silliness of this endeavor. But neither of those prevent me from eagerly perusing the online catalogues to see how I can add to my collection.

I once brought a pillow sham from a new set of bedding to the paint store so they could use a computer to precisely match the paint for our bedroom. When Glenn and I  selected furniture for our living room, an interior designer at the furniture store responded to my preliminary choice of fabric colors with a dismayed, “But we don’t want it to look too matchy-matchy!” When a favored fiction author releases a book in hardcover for the first time, I am dismayed that the new book will not match the others in my paperback collection.

I’ve got it bad.

For sure, the longing for things to match is one expression of my chronic perfectionism. Making sets of personal and household items match is one way of imposing order in my little universe.

So it isn’t easy to have mismatched legs. Of course, there are many worse struggles with being an amputee (like blisters in my groin), and at least one really good thing (I’m not dying of a staph infection in my dilapidated leg). But the mismatch still bothers me.

Given my lust for matched sets, you’d probably assume that I requested foam covering for my prosthetic leg so that it would come as close as possible to matching the shape and color of my biological leg. But I didn’t. While foam is straightforward for below-the-knee amputees, it is far more complicated with above-the-knee prostheses that use a computerized knee that must be charged daily. The finished effect approximates “normal” only when providing shape under long pants.

But even if prosthetic foam could be made to look more realistic for my prosthesis, it still wouldn’t match my bio-leg. It would be pretending to be flesh, masking its true biotechnological nature with an imperfect facsimile.

This inability to have my legs match in appearance and in function gets me where I’m vulnerable, in the part of me that longs to be perfect or at least normal. Perfectly normal.

Even after decades of late effects of cancer treatment, part of me wants to go back to who I was before the cancer, to that version of me where my limbs matched. She is irrevocably gone, of course. And perhaps more significantly, she never felt as though everything in her life matched either, even when she wasn’t sick and had all her limbs.

One of the most misleading things that well meaning folks say to people when their cancer treatment ends is some variation on “now you can go back to normal,” as though you could possibly re-inhabit the point of view of your pre-cancer self. Or “now you can  go live your life,” as though cancer treatment were some sort of “time-out” from living instead of a visceral, intense, frightening period in which you were more aware of living than ever before.

For good and for bad, I can’t ever go back to having a matched set of legs. Health communication scholar Dr. Lynn Harter writes eloquently about how survivors imagine “new normals” for ourselves to inhabit after a life-threatening illness, because there is no going backwards in our life stories, only forward.

My new normal as a long-term survivor allows for much joy, love, and productivity, while necessarily making room for blisters, medical appointments, and sadness. My new normal is always changing as I continue to imagine possibilities for my life with two dissimilar legs, each of which I am grateful to have. Most days I concentrate on imagining creative ways of living a new normal, rather than clinging to old ways that no longer fit me.

That said, the new possibilities for living will not extend to mismatched dishes.

 

The Case of the Phantom Cat

IMG_1865The other day, I was reading in bed with my cat Westley sitting on my lap. He was warm and soft and purring, his plump body exerting a pleasant pressure on my legs.

Suddenly I realized that I was feeling Westley’s warmth and weight on both of my legs. As an above-knee amputee, this is an impossibility for me. I looked down at my lap and took stock.

As expected, my leglet was encased by the hard, epoxy-coated socket that keeps the prosthetic leg attached to my body. Thus, there was no way that I was actually feeling the warm, cuddly vibrations of my cat purring. And yet I perceived this comforting  sensation across my whole lap. As I concentrated more fully on the feeling, it slipped away, and in its absence I realized that I just had my first pleasurable phantom sensation since the amputation ten years ago.

I regularly have non-painful sensations of my missing limb along with the painful ones — such as when I am getting settled in bed and have to find a comfortable position for the phantom limb. I don’t object to those sensations, but I don’t enjoy them either.

Yet the phantom sensation of Westley purring on the right side of my lap delighted me. And it got me thinking about phantom pain and sensation and where these come from and why they persist. The pleasure of phantom “cat-on-lap” sensation sparked hope and possibilities that I had not previously considered.

The topic of phantom sensations also came up during a webinar I led last week on embodiment in qualitative research (because I’m a total nerd!). I disclosed that I am an amputee and explained how my unruly body relates to my experiences conducting research.

One of the webinar participants asked me how phantom pain is explained by medicine or neuroscience research. And I answered that researchers really don’t know the causal mechanisms, although they have identified some affected areas of the brain in amputees who have phantom pain. A new insight also popped into my head at that moment: phantom pain is from the imagination. Yes, the brain is involved, and neurotransmitters and such, but phantom sensations are holistic, embodied creations that we imagine into being.

I am accustomed to thinking of phantom pain as an unfortunate byproduct of decades of surgeries and chronic pain that led to the development of specific neural pathways. That is, I think of phantom sensation as a dysfunction of my brain’s sensation and perception system. Conversely, I think of imagination as a positive function and the source of my writing, teaching, and creative living.

It makes sense that my first pleasurable phantom sensation would be cat-on-lap, given my adoration of my fur babies and reputation as a crazy cat lady. Pleasure liberated me from the paradigm of system failure, prompting the recognition that my brain and body and spirit were all collaborating to make something, rather than only being mired in painful dysfunction.

The human nervous system is accustomed to discerning and constructing sensation and perception using imperfect inputs as we function in our everyday lives. That is, we can’t pay attention to every sensation our bodies experience at every moment, and our senses can get confused fairly easily. So our brains compensate using selective attention and logical guesses based on established patterns to enable us to live in world and react quickly and (more or less) appropriately with our bodies. This attention and guessing and reasoning is imagination in action.

My nervous system does the best it can to compensate for my missing limb, and it makes mistakes that it interprets as pain, which sucks. That it can also make pleasurable mistakes in the form of cat-on-lap is a reminder of all the pleasant or unremarkable but essential ways in which we use our imaginations all day, every day as embodied beings.

I’m willing to bet that dog-on-lap sensation works almost the same way.

I want a day off from having a disability

goslingpto

It took 4 tries to get my prosthetic leg back on this morning after my workout and shower, my movements growing sharper and more impatient as the minutes ticked by without success.

My leglet swells in hot weather, with exercise, and in the shower, and this morning the perfect storm of all three conditions prevented me from properly donning my socket (the part that holds the prosthetic leg onto what’s left of my leg). I sat with an ice pack under my leglet for 20 minutes, which was about as unpleasant as you’d probably imagine.

As I felt more and more frustrated, I took slow, deliberate breaths and thanked my auntie, who I happened to be talking to on my cell phone at the time, for her wonderfully distracting chatter about her life and questions to me about my recent vacation. Our conversation kept me from completely losing my freakin’ mind.

“You know what would be amazing?” I asked Aunt Joan, who also lives with a disability. “If those of us who are disabled could have one day off from living with it, every once in a while. A day to just not to have to deal with all the crap.”

“That would be awesome!” said Aunt Joan. We agreed that this fantasy should be realizable about once a month before sighing together over its impossibility.

That’s the thing about disability–you don’t get a day off. Ever.

There are good days and bad days and epically horrible days. And there are even mundane days where your attention is absorbed in daily tasks or a looming deadline or your best friend’s crisis, and you don’t really think about being disabled. But there is never a day off from it.

My spouse Glenn works for a regular company, and he gets this thing called PTO, or paid time off (as opposed to being faculty at a university like I am, which involves a different approach to schedules and paid work time). PTO encompasses vacation, personal days, sick days, and any other time he’s not working but is still being paid.

I’d like to propose DTO, or Disabled Time Off. This would involve some kick-ass, Hermione-Granger-level wizardry, but this is my fantasy, and I don’t think we should let little things like physics and biology and capitalism stop us. So here goes.

During DTO there would be:

  • no pain, no drug side effects, and no malfunctioning medical equipment.
  • no strangers would ask inappropriate or patronizing questions about your body or tell you that “it’s just great that people like you can get out of the house and get around” (yes, a man really did say that to me).
  • no customer service employees would address your companion instead of you while waiting on you.
  • you would not arrive at a car rental, airline check-in, hotel registration desk, or other facility only to find that the accommodation you requested 6 weeks in advance is unavailable or will involve a lengthy wait in discomfort while someone tries to find what you need.
  • you would be able (if desired) to perform all “activities of daily living,” the official list of tasks (such as dressing and grooming yourself, feeding yourself) that determines who “counts” as disabled (used by the government, insurance companies, hospitals, schools, public services).
  • you would have sufficient energy to meet your friends and do whatever fun thing you had planned for the day.

Yeah, yeah, I know. Not going to happen.

Still, dreaming up DTO kept me well entertained as I finally got my prosthesis on and hurried to put in my contacts, comb my hair, and brush my teeth.

I don’t mean to suggest that having a disability cannot also be a positive part of my identity, body, and life, because it is. But taking a break is healthy. I love my job, but I benefit from vacation away from it. I love my spouse, but I have friends and interests that involve spending hours, days, and the occasional week or two without him.

I love my disabled body, but I’d still like a day off.

 

 

 

Happy 10th Amputation Anniversary!

HC-GV434_Dumpty_G_20170922163520

It’s the 10th anniversary of the amputation of my right leg, and I have the Humpty Dumpty nursery rhyme bouncing around in my head. The rhyme concludes with bad news: All the king’s horses and all the king’s men couldn’t put Humpty together again.

We could paraphrase this for me: All the great surgeons and all the strong meds couldn’t put Laura together again.

It’s been 10 years since the combination of past cancer, scar tissue, complications, wear-and-tear, and repeated infections screwed up my right leg so badly that an above-knee amputation was a better deal than trying to rebuild the leg yet again. It feels like it’s been way longer than that, and also like it cannot possibly have been so long ago.

I feel intense gratitude that I am alive and reasonably well. And I also feel as cranky as a toddler who missed her nap as I cope with phantom limb pain, the eccentricities of my prosthetic leg, and the endless mundane details of amputee-hood.

The challenge remains in negotiating a healthy balance between gratitude and crankiness. I’d prefer to be so steeped in love, compassion, and gratitude that I never feel like a kid having a tantrum, but I haven’t figured out how to stay in that perpetual state of peace. No one ever does.

One of the many incredibly practical things my therapist taught me–and probably many, many therapists attempt to teach their own stubborn clients–is that there is no there there. That is, there is no point you can reach in which it is all better, all fixed, all sustainable, all perfect. You can never get there, because there  is a moving target.

I hate this insight and I love it in equal measure. I hate it because the longing to be done with cancer late effects once and for all is so strong that I ache for it, and its continual absence makes me cranky. And yet if there is no there, then it’s not my fault that I haven’t arrived there, which is a huge relief. Also, this means no one else is already there, looking down their nose at me because they made it and I didn’t.

This 10th anniversary marks a decade past the last of my 17 surgeries. I feel like this milestone should be the there  I have been trying to reach.  After all, so much has happened. Ten years is long enough to have reached my 25th wedding anniversary, to have been promoted to full professor at my university, to have moved into what we hope will be our forever home, for my youngest niece and nephew to be tweens and my beloved kitties to become middle-aged.

Ten years of survivorship has taught me so much, including much I would rather have skipped. The milestones and accomplishments of this decade are meaningful to me, even though they can’t always offset the crankiness-inducing realities of late effects.

On a whim, I looked up the traditional 10th wedding anniversary gift and found that it is tin or aluminum. Those metals are durable and flexible, qualities needed in any longterm relationship and a good reminder of what I should strive for myself as a long-term cancer survivor and amputee. Perhaps if Humpty Dumpty had had more of those qualities, the king’s men could have put him together again.

 

 

 

 

 

Failing Better

0fb955defc9be681558e901c7d85f96c

So I just left a coffee shop and failed to look down to see a speed bump in the parking lot. I caught my prosthetic toes and went tumbling.

My left hand, hip, and forearm smacked the pavement hard, and the pain registered a half-second after the impact. Ouch.

A second later, humiliation stained my cheeks as I lay sprawled, my laptop bag thrown several feet from me and my body twisted with my unbent prosthetic leg at an awkward angle. I looked around quickly, but for once my epic fail went unwitnessed.

Urban Dictionary—an indispensable aid for faculty whose students spout innovative terminology at dizzying rates—defines epic fail as a “complete and total failure when success should have been reasonably easy to attain.” That about sums up walking across a parking lot, which should be a no-brainer for me after all these years as an amputee.

I know better than to walk without looking down, but I did it anyway because I was distracted while digging in my bag for my car keys, a multi-tasking luxury that leg amputees must forgo – or pay the consequences. I can walk or look at something (other than the ground), but not both.

As I awkwardly regained my footing and retrieved my bag, a rapid series of emotions moved through my body. Resentment compressed my lips into a thin line. Gratitude that I was not seriously hurt released my shoulders from their clench. Grief for my pre-cancer body-self rolled through my stomach. Shame at my failure to accomplish a basic life task kept my cheeks hot and tingly.

The Irish writer Samuel Beckett’s famous quote (taken out of context from his brooding contemplation of “the void”) came to me: Fail. Fail again. Fail better.

I’m not sure I’m failing any better now than when I first became an amputee. In fact, this lapse of good judgment is arguably a worse fail, since I knew full well that I was doing something dangerous, yet I did it anyway.

As I made my way to my car, I tried to think of a positive outcome, a lesson I had learned from this particular failure. How could I think of this as a better fail than the last one? I couldn’t.

Driving home, left side aching, it finally occurred to me that the best thing I could do would be to be kind to myself, to offer myself compassion rather than condemnation. That’s not easy for me; beating myself up for imperfections is a long-time habit. Offering myself the same compassion I would offer to a friend if she fell for any reason could be a transformative experience. If I think of failing better in terms of more effectively coping with the inevitability of failure (as opposed to moving closer to achieving success following a failure), I can reframe this as a better fail.

I managed to stop berating myself and instead talked gently to myself as I catalogued my aches and pains and affirmed the importance of not making this same mistake again. I spoke kindly, reassuring myself that it wasn’t a big deal, that there is no need to feel ashamed by my fall.

I think it’s time for an update and repurposing of Beckett’s famous quote:

Fail. Fail again. Fail compassionately. Fail shamelessly. Fail kindly. Fail with self-love.

 

 

 

 

 

 

 

 

 

Learning to Speak Survivor Language

im-hanging-in-there

“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.