Busy day becomes busy week becomes busy blog post

I’ve been trying to write this blog post for over a week.

First it was class prep — a new edition of a textbook that I haven’t used in years, so all my notes needed to be updated, and then two of the Youtube links I had used in that lesson plan no longer worked, so I had to search for new videos that would both amuse and teach my students. Met with a couple new students and replied to a zillion emails.

Then it was a fun evening at Dining for Women, a charity potluck dinner I attend monthly with my mother, which kept me out late drinking too much Diet Coke, too close to bedtime, which in turn gave me heartburn that kept me up too late, so that I was dragging with fatigue the next morning.

Then it was grading, and more students, and more class prep and more teaching, plus a meeting with an administrator about why our campus desperately needs a victim advocate for students and how such a position might function.

Picked up laundry and clutter and wrote a check for the housekeepers. Backed out the drive way, realized I had forgotten to clean the cat boxes, and prayed that Buttercup wouldn’t object to my forgetfulness by peeing on the floor [spoiler alert: she didn’t!].

Had coffee with a friend whose teenagers are being, you know, teenagers, then got my hair colored — because really, one must have one’s priorities straight, and my feminism allows for me to employ a Hair Goddess who magically disguises my gray hair.

Worked out, then more grading, more students, and a quick spin through Trader Joe’s so that we would have something for dinner, followed by more grading (why do I assign so many papers?) and even more emails.

Watched an hour or so of TV with Glenn before I fell asleep in the recliner, roused when Glenn woke me to go to bed, and then spent 10 minutes prying my dry contacts off my corneas, brushing my teeth, removing my prosthetic leg, and rubbing lotion into my itchy, sore leglet– after which, I had trouble falling asleep again.

Woke with a start when I realized I hadn’t finished the letters of recommendation that were due, finished them. Waited for the plumber, called the plumber, swore silently, rescheduled with the plumber. Took my parents out for an ice cream and to run errands, graded some more, then went to my BFF’s house where we used the DoorDash app to order dinner instead of making homemade pizza, because I was just done.

All of these things, and many others I have forgotten, are why I am just now finishing this blog post about a realistic view of living after cancer, post amputation, with chronic pain — and adorable cats and great friends and a wonderful husband — and a very busy schedule.

So yeah, I think that about covers it.

 

 

 

Squeezable sour cream and the capacity for wonder

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I have mixed feelings about sour cream. I mean, I absolutely love it, but it’s high in saturated fat so I should consume it in moderation (I have a family history of heart disease). Glenn doesn’t like it, so I tend to buy a small container, use 2 or 3 tablespoons of its creamy goodness, and then leave the rest to mold in the back of the fridge, buying more the next time I need some for a recipe.

I recently discovered that someone had the positively brilliant idea to put sour cream into a soft, squeezable container-bag-thing so that the contents are easy to dispense decoratively over a pile of nachos or a plate of appetizers, and it stays fresh for an incredibly long time in its sealed pouch of deliciousness.

I stood there beaming a bright smile in the dairy aisle of Zanatto’s Market, filled with wonder at my discovery. What an amazing world we live in — squeezable sour cream!!!!

Wonder has been in short supply. Lately I’ve been in despair over the current political climate, the news about Hurricane Florence’s damage is devastating, I’ve got way too much work on my plate, and I’m worried about various loved ones who are ill or struggling with tough issues.

Needless to say, the squeezable sour cream doesn’t help anyone dealing with the aftermath of a hurricane, and it certainly doesn’t address the problematic Supreme Court nomination/confirmation process. It can’t lessen my work load and it definitely won’t help my aunt recover from her recent back surgery.

But the few moments of wonder that suffused me in the face of this outstanding gastronomic innovation are precious to me. Wonder is excitement and surprise and joy and hope and admiration all at once. Wonder is a full-body experience — my mouth dropped open and then transformed into a wide grin, my eyes shone with pleasure, my lungs expanded as I took a quick breath, energy flowed down my arms and leg.

When wonder comes–for any reason, even something as silly as an improved way to package sour cream–we need to embrace it. We need to stop and pay attention. We need to recognize its power: Wonder is a resource for making it through everyday hassles, personal crises, and natural or political disasters. Wonder is food for our souls.

Wonder is kin to gratitude but it’s more than just appreciation. Wonder evokes a sense that the world is full of possibilities that haven’t been created or discovered yet. Squeezable sour cream reminded me that I don’t know everything, that I often can’t see what’s coming, that life’s uncertainty includes happy, fun, intriguing, useful, marvelous things, not just the bad stuff.

Not everyone I told about this experience with has shared my sense of wonder. In fact, most people have laughed, not unkindly, in the face of my exuberance over squeezable sour cream. But that’s okay.

I truly value this aspect of myself. I am thrilled that despite all the pain and the side effects of the pain meds and the hassle of my prosthesis and the stress and worry, I still feel wonder over simple things. And that wonder fills my soul so that I have sustenance to cope with whatever life throws my way.

And this particular wonder made some excellent nachos as well.

Performing Pain

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I just returned from a trip back east. For most of the four days, we enjoyed gorgeous, sunny weather, but one afternoon we had a storm.

This thunderstorm rolled rapidly across the bright blue sky, transforming the scattered, puffy, white clouds into a bank of dark gray in a few moments. The sudden decrease in atmospheric pressure (that’s the thing measured by barometers) that accompanied the storm sparked a sizable bout of phantom pain in my missing leg.

I wasn’t actually surprised; I have told a couple of pain doctors and other amputees that my phantom pain gets worse when it’s storming, and they all agreed that this weird phenomena is quite common among amputees. To my knowledge, no scientific evidence supports our claim, but anecdotal evidence abounds.

And during this thunderstorm, the anecdotal evidence was plentiful — that is, my missing limb hurt a lot. My traveling companion, one of my aunts, was compassionate and eager to help. Unfortunately, all I could do was wait it out, so I tried to distract myself by reading, answering some email, and then talking with my aunt.

A couple of hours later, my aunt asked, “How is your phantom pain? Are you feeling better?”

“No,” I stated, shrugging. “It’s still pretty bad.”

My aunt looked surprised by my response, and it occurred to me that I wasn’t acting like I was in pain. I mean, I wasn’t giving off any cues that the pain continued to be a problem.

I’m not a martyr; I often let people know I am in pain by gasping when it spikes or groaning or even crying if it gets bad enough. On the other hand, I’m also pretty used to being in pain, and I don’t always bother to express the pain on my face or body if it isn’t too bad, particularly if I’m teaching or in a meeting or giving a presentation at a conference or really enjoying a conversation with a friend. It’s not that I don’t feel the pain in these instances; it is that I don’t need to perform feeling the pain.

I think that the “rate your pain on a scale of 1 to 10” is a fairly limited approach to pain assessment, but it’s all I’ve got. On a scale where 1 is a paper cut  and 10 is when (true story) the recovery room nurse shuts off your morphine drip after major orthopedic surgery because your breathing is so shallow they are afraid you will stop breathing entirely, then this phantom pain caused by the storm ranged from about a 4 to a 5. It was definitely noticeable, couldn’t nap through it, exhausting after awhile but not incapacitating, like bad menstrual cramps or walking home on a definitely-twisted-but-not-really-sprained ankle.

So the pain I felt was considerable, but at the same time, it did not necessitate an outward performance.  Not that my aunt would doubt me, but it was reasonable to assume that the pain had passed since I was sitting there without grimacing or gasping or yanking my prosthesis off to massage my leglet. A dear friend who visited earlier this summer told me that she had not realized that I was still dealing with phantom pain all these years later, until she read one of my earlier posts.

It occurred to me that involuntary expressions of pain are not my choice; when the pain gets bad enough, my body performs it whether I want to or not. And when pain first begins anew, I often frown and sigh or gasp, even if the severity remains on the lower half of the scale, signaling pain’s reappearance. But in the middle of the scale, I have some discretion, some choice over the performance.

My recognition of choice in the matter triggered my OCD-ish tendencies. Am I being dishonest if I hide the pain? Am I asking for pity if I give cues that aren’t completely necessary or involuntary? Am I just feeling sorry for myself if I let others know I am in pain? Is it possible that it helps people to be patient with me if I give them occasional reminders that I am often in pain? If I let people know I am in pain too often, will that make them not want to be around me–will they think I’m negative, whiny, needy? Will they think I’m strong or just lousy at managing a chronic pain condition?

I never pretend to be pain, but how to perform the degree of pain I experience, and whether to perform it at all, are often (but not always) a choice. I find that both comforting and a burden.

 

 

A Fish Tale

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So I bought a fish on vacation in Maine this summer. Not as a dinner entre–although I had some wonderful haddock while I was there–and not as a pet either.

No, I fell for a large, welded metal fish. I found it while browsing in a gallery in Boothbay Harbor with Glenn.

I don’t actually know what to call the thing I bought. Statue? Object d’art? Tchotchke? Dust-catcher?

Glenn didn’t love The Fish but could see that I did, and we agreed that it could go in the breakfast nook. We have a peace-promoting policy in our partnership: we have to both really like a piece of art for it to be placed in our living room, but we can each decorate our offices, the TV room, and other smaller spaces more or less at will. Glenn remained stubbornly immune to my new-found fish’s charms, but I knew it would enhance my coastal themed nook, so I was fine with that.

We had it shipped home, and I beamed at Glenn as he placed it carefully on the shelf I had decreed as The Fish’s spot. Glenn chuckled, clearly laughing at me, but gently and with love and appreciation for my weird self.

I’ve now shown The Fish to several friends and family members, all of whom have given me the same vague “that’s nice” response. No one else sees the magic and whimsy. No one else detects the playful contrast between live, floppy, wet, fish bodies and a cold, sturdy fish made out of scrap iron. No one else senses that this fish radiates a happy energy.

Hey, you gotta do you, as my hip young students say. And I gotta do me. It’s liberating to be able to say, even in this small way, that I don’t need others’ approval to express myself. I don’t need to bow to what’s cool or trendy or fashionable rather than embracing what brings me joy.

The Fish is only the latest of my unusual collection. In my school office, I have a mobile of multi-colored cats and a bi-plane made out of Diet Coke cans hanging from my ceiling. A Periodic Table of the Desserts adorns my wall, adjacent to an old-school metal Rosie the Riveter “We Can Do It!” sign, a sun-catcher with a cute cat on it that my paternal grandmother gave me years ago, and a miniature drawing of the “Make Way for Ducklings” statue in Boston’s Public Garden. I have a giant pen shaped like a flamingo with a head of fluffy feathers, and thanks to my BFF, a Crazy Cat Lady action figure, complete with several tiny plastic cats.

Following in the long tradition of eccentric women, I am comfortable with my oddness and aware that it sometimes sets me apart. I don’t know if it is my advancing age,  intersectional feminist values, or fabulous role models — probably all of the above — but it feels good to embrace the metal-fish-loving person I have become.

As I sipped my chai tea and ate my muffin this morning, I smiled contentedly at my fish   — and at myself.

 

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

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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.