The 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.

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.

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.

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 5^thor 6^thof 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.

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.