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.