Category Archives: body

so simple, so tasty

radishes, farmers cheese, chives and toast

radishes, farmers cheese, chives and toast

Today’s simple pleasures: fresh cheese, good bread, and local veggies. Yes, please.

As I stretched this morning I felt a warm burn in my belly and realized that I was starting to pull against some of the scar tissue from my surgery last year.  I hadn’t realized just how tight I’d become, from that.  And I’m trying not to be (already) discouraged about just how much work lies ahead as I regain my former flexibility.  I knew that I had a significant amount of scar tissue to work through in my lower leg, but I hadn’t considered that as a lingering issue for my abdomen, too.

my cyborg form

This video shows a team of designers rebuilding clothing mannequins to resemble differently-abled bodies.  It’s a moving story, well-worth the few minutes it will take to watch it.

For me, this video highlighted the oddness that I sometimes feel when techs are building the “cosmesis” of my prosthetic leg–the sculpted form that creates the structure to give my metal innards a symmetrical form.  They trace my organic leg and then shape firm foam into a matching shape, shaving it down a bit here and there to make it look proportional, and then we test it under clothing to ensure that the fabric flows smoothly and doesn’t bunch up around the knee or gather in odd ways at the hip or crotch.  In this process they build me a cosmetic leg with all of the requisite properties of leg-ness, despite it being a completely function-less addition to my body.

Due to still being in a phase where my new prothesis is being adjusted often (like today, it’s just started making a clanking noise as I walk around corners–time to go back in and figure out what’s going wrong), I’m not wearing any cosmesis at all.  The asymmetry between my legs makes most clothing looks a bit strange, such as when the right pantleg of my wool trousers flaps back and forth in the wind as I walk across campus, or when I am sitting in a meeting and my right knee comes to an obvious narrow point instead of being neatly rounded like my organic leg.

And while I think my bionic parts are uber-cool looking, at work I rarely wear short skirts or other clothing that shows my metal innards.  Because it’s so much easier to “pass” than to have my body be a spectacle to passersby (or colleagues or students).  I’m not at all embarrassed of being cyborg, but it adds a layer of inconvenience to my interactions that I prefer not to introduce in my professional setting.

But on the weekends, it’s a different story.  Then I wear short skirts and sandals and enjoy letting my robot hang out there for anyone to see.

shadow, at the beach

shadow, at the beach

 

just one step at at time…

When we went out shoe shopping recently, Catgirl and I took a rather odd detour from the parking structure to the shopping plaza.  We went up the stairs and then up and down the wheelchair ramps twice.

You walk so fast now, she said.

A few weeks into wearing my new Plie 2.0 robotic leg and I am, indeed, a faster walker than before.  Particularly downhill–the mechanics and control algorithm for this new leg making downhills so smooth (c-legs, on the other hand, are pretty choppy on the downhill).

In addition to wearing the new knee, I’m also wearing a Fitbit device to mark my number of steps and activity level.  My graph over the past two weeks shows some pretty dramatic changes from where I was several months ago (my daily step average increasing from 3483 to 4819 since August):

Screen shot 2013-10-25 at 3.06.28 PM

I’ve noticed only one small glitch with the new knee and that’s that when I have a long stretch of evenly-paced steps, after a few hundred paces it will hiccup a bit and I’ll end up dragging my toe for one step.  I imagine that this is some kind of firmware bug that can be ironed out.  But it’s a small glitch, and certainly livable except that it tends to affect my full trust of the limb (for the few steps after each hiccup I find myself reticent to put my full weight into a step).

Overall, the new knee technology is even better than I imagined. I still limp and I’m not (yet) running hurdles, but it’s a dramatic improvement over what I had before (yay, technology).

 

 

between Scylla & Charybdis

Last year I set a HUGE goal for myself: to train for the qualifying race to win a spot on the U.S. paracanoe team heading to the 2013 World Sprints. It’s a particularly ambitious goal because I’m switching from the 6-man long distance ocean canoeing that I’ve been doing for several years to paddling a rudderless canoe in short flatwater sprints. But, I decided that there was no time like the present to set my sights on something ambitious. So, to cement my plan I bought a plane ticket to the race and began training in earnest.

Then a few months ago, I started realizing that something funny was going on with my left (read: my only) foot. My ankle was swelling and my toes felt numb. Because the numbness often occurred when I was sitting in my canoe, I assumed that there was something wrong with the design of my seat and that my nerves were being pinched. Until I went in for a routine physical.

30089_898609991271_7884299_nMy doctor found a mass in my pelvis during my exam. And then a follow-up ultrasound showed that there were two masses (for the record, I’ve now christened those two lumps “Scylla” and “Charybdis”). More tests came back and I learned that I have three different medical issues that each warrant some surgical intervention.

For someone who’s had cancer before, this news was not easy. Tears. Fears. Why me. And most of all, why now–when my body is stronger than it’s ever been?

There’re still a lot of medical questions and I’m in the process of getting answers.   In the meantime I’m in some pain–both emotional and physical. I have good days and some not-so-good ones.  I’m not out in my canoe as often right now, although I’m swimming regularly to maintain conditioning.  I started yoga again–my body craving the stretching and breathing at this time when things are out of sorts.

But above all, I’ve been questioning whether my goal was a ridiculous one. I’ve been asking myself, “Who am I, for crying out loud, to think that I could be an athlete?” I’ve wondered whether I pushed too hard, and at what cost.

So it was bittersweet news a few days ago to open an award letter from the Challenged Athletes Foundation, to learn that I’d earned the funds I needed to finance my racing goal–a grant that I had applied for many months ago. I cried and cheered and then sat in the sun on the back porch and pondered what it really meant for me, right now.

And this is what it means. I will probably not be in that qualifying race in New York in July that I’d originally aimed for because I need time for recovery and to build my strength again after surgery. But that doesn’t mean that the HUGE goal is gone. There will be other outrigger races and I will get stronger. Again and again.

I’m remembering a meeting I had with a university athletics coach recently. I told him a bit about my background and my racing goal and as I did so he sort of shook his head a bit. And then he repeated it back to me: “You had cancer when you were 12 and you lost your leg. Then ten years ago went back to school and started a PhD program and then finished it, as a single Mom of two teens. And then you started a new sport five years ago after never being particularly athletic and now you want to compete internationally.” He paused for a bit and I expected him to laugh at me–this crazy one-legged woman that he’d just met and who had described such a circuitous life story.  Instead, he replied: “Then my money is on you to win that race.”

So come Scylla, come Charybdis, or whatever else life might throw my way…I’m going for this one like I have with so many other things.  One step at a time, one day at a time.   And with the knowledge that working towards a huge goal is more of a reward than anything that happens at the finish line.

Photo above of one of my all-time favorite IMUA races–our canoe had started the race DFL and worked hard enough to finish just behind the boats that medaled.  What an amazing feeling to have worked so hard together and to have accomplished so much…

better than able…

When I go through the “TSA personal massage” process, the agents giving the patdown are usually skeeved when they feel my right calf and foot, which are textured to feel like real flesh and bone.  I’ve been told that it gives them the “chills” to feel something so real and know that it’s not.  Or, as has happened more than once, they assume that my titanium thigh (which is evident as hard metal even through clothing) is somehow connected to a real flesh-and-bone knee, calf, and foot).

From Cyborgology:

This may or may not be so – it’s difficult to be sure, in what are arguably still early days of this particular kind of human augmentation, but again, I would take this a step further: that, as both Jenny and I have argued, what makes us the most uneasy right now about human augmentation is the idea that it might make people – especially people with disabilities – better than abled humans. We can usually stomach humans with close relationships to objects and machines, provided they don’t begin to transgress the boundary that not only delineates a category but defines that category as an ideal.

I don’t yet have bionics that rival an organic limb, but I welcome that day and I assume that it’s not far away.  For now, my fake-leg-wishlist includes the ability to add a wifi hotspot and a USB port for charging my phone.  I’m not far off from that goal, either–my awesome friend Scott has already built up a prototype of the USB-adapter leg with my old bionic knee.

And once that’s in place I suppose that I’ll even let my friends charge their devices off of my battery once in awhile.  Because I’m nice like that and I feel a little bit sorry for the rest of you that don’t have awesome bionic peripherals like mine.  😉

making a fist

Perhaps one hard lesson of the last few years of my life has been to learn to express uncomfortable feelings–the coping mechanism of so many years of suppressing sadness is hard to undo.  But what I’ve realized is that I can tell when there’s something I need to express…because my left hand will be balled into a tight fist. Generally I don’t even know that I’m doing it, but I will look down and see the knuckles white and fingers tight and know that something is awry.

(It’s been interesting to peruse my photos from the last few years and to see how many of them include that tight fist in the frame.)

Today, I am finding my hand in a fist because of that hug that I gave my college-bound son at the side of my car just before he walked away with two suitcases in hand.*   That moment recalled many similar hugs that I’ve given in the past.  Hugs meant to hold on to someone who was leaving.  To keep them close and safe, despite distance.  To offer a memory for me to grasp on days when my hands are empty.

Making a Fist
by Naomi Shihab Nye

For the first time, on the road north of Tampico,
I felt the life sliding out of me,
a drum in the desert, harder and harder to hear.
I was seven, I lay in the car
watching palm trees swirl a sickening pattern past the glass.
My stomach was a melon split wide inside my skin.

“How do you know if you are going to die?”
I begged my mother.
We had been traveling for days.
With strange confidence she answered,
“When you can no longer make a fist.”

Years later I smile to think of that journey,
the borders we must cross separately,
stamped with our unanswerable woes.
I who did not die, who am still living,
still lying in the backseat behind all my questions,
clenching and opening one small hand.

*He’s not gone to college quite yet, but will be with his Dad for a few days until he leaves

why I stopped taking PPIs for gastric reflux

This post feels a bit like a PSA rather than a typical pilgrimsteps post.  But I wanted to share my experience with PPIs just in case it might be of help to some of you….

Last year I struggled to paddle because of severe back pain that was due to some problems with my prosthesis.  But it wasn’t just back pain, it was horrible painful muscle spasms that I had in my back, but also happened just about anywhere whenever I exercised vigorously.  My muscles just simply didn’t seem to be responding well to exercise–I was continuously fatigued and got cramps easily no matter what type of supplement I tried.

As a result, I quit paddling about halfway through last season.*

It wasn’t until a few months later that a lightbulb went on in my head as I talked with a friend about my chronic gastric reflux problems.  She told me that long-term use of over-the-counter PPIs did have long-term side effects (despite my thinking that they were nearly-benign meds) and that one of those was mineral loss.  I realized that the muscle cramping symptoms that I was experiencing were quite similar to the problems I’d had more than a decade previous when I was calcium deficient.  Given that I already have the double-whammy of bone density loss from being female and from having had high-dose chemotherapy, I started to become nervous about my dependence on PPIs to get me through dinnertime (it was almost always dinner that gave me problems–causing acid reflux for hours afterwards).

So…I stopped taking the PPIs cold-turkey and modified my diet as much as I could to compensate (such as no citrus or tomatoes and more yogurt).  Within a few weeks my acid reflux symptoms mostly disappeared–with only an occasional flare-up during stress.  And I found that I regained my muscle endurance fairly quickly after that.

I know that PPIs are necessary for many people and I’m not suggesting, necessarily, that you do what I did and stop taking them.  But I think it’s worth reading this recent article that warns of their side-effects, and to consider whether they are drugs that you really do need to be taking regularly.  In my case, I think the PPIs caused me to exercise less which exacerbated my reflux and led to weight gain (weight gain being one of the major contributors to reflux issues).  And I needed to get off the PPIs to I could become more active and healthy again.   My hope now is that the year I spent taking them won’t result in any long-term effect on my bone density.

*Additional motivation for quitting mid-season was due to some problems with my coach and the need to focus on my studies.  But the major reason was that I was in terrible pain each time I tried to paddle, I and I simply couldn’t figure out why my body was hurting so badly.

enjoy your body…

I’ve been going through some of my older posts lately, and came across this one that I posted just before heading to Europe last summer (oh, I can remember now how nervous I was about that trip, my first to Brussels).

This phrase jumped out at me today from the Baz Luhrman speech:

Enjoy your body…Use it every way you can. Don’t be afraid of it or what other people think of it…it’s the greatest instrument you’ll ever own.

I think that phrase resonated with me because I’m acutely aware of my body’s limitations and flaws.  But I am determined not to let that keep me from doing all that I can with it.  The complexity and strength of my body continues to amaze me–that I’m sitting here typing and sipping a latte and trying to get Ellycat off of my lap all at the same time (while listening to the birds outside and feeling the tautness of my shoulders from my workout yesterday and feeling the dryness of my eyes that is the early morning), is simply amazing.

A few times yesterday I jumped from my canoe into the ocean.  The water was pretty cold and it was overcast.  The physical heat of having paddled so hard on the ocean combined with the brisk cold of the water made me feel so blissfully alive.

I ask my body to do a lot of hard things–but I realize that I like doing those hard things.  It feels so satisfying to stretch and pull and reach, and to be present to the various sensations (even pain, sometimes) that pushing my physical limits brings.  As I paddled down the channel and into the Back Bay yesterday I felt so grateful to have a strong body right now and to live so close to water where I can swim and paddle.  I don’t want to take any of that for granted, because it is such a gift.

Here’s the entire Luhrman speech below.  It’s well worth your time for a listen.  And as he recommends, I always wear sunscreen  🙂

Digital

Last night when you were steering a canoe through some heavy swells you caught the edge of your thumbnail on the gunnel of the boat and the angle was just so that it pulled off half of the nail. And you swore and then realized that was going to hurt a lot and then you kept paddling because you needed to. If it was just that one thing perhaps you wouldn’t have wondered so much. But if that followed an incident over the weekend when you grabbed your razor wrong when you pulled it out of your suitcase and sliced through the pad of your fourth finger (and thank you concierge for the band aid and the sympathy) and last Tuesday when you grabbed a pan from the oven the wrong way and got second degree burns on three other fingers and just a few weeks ago you accidentally sliced off the tip of your middle finger…

If this is you, you might wonder why such things just keep happening to your fingers. And whether you ought to just preemptively bandage them all because you’re worried about what will happen next…