Category Archives: amputee

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.  😉

going the distance…

I spent this morning in the ocean with some coaches, getting tips on my long-distance swimming.  I’m new at this, so I had a lot to learn, and it was incredibly generous of these folks to offer their time to help me.  It was arranged via the Challenged Athletes Foundation (CAF), for disabled athletes who are preparing for triathlons and need open-water swim skills.*  This is the first time that I’ve worked with CAF and it was an interesting experience.

First of all, I want to emphasize how appreciative I am of the experience and how responsive the coaches were with me, not knowing me beforehand or being confident of my swimming ability (and, I did choke a few times out there–I’ve never tried to swim for distance in the open water and it was tougher than I thought it would be).

What made me feel the best was when the coaches critiqued what I was doing and challenged me to do better, rather than when they took it easy on me.  For example, for the first 30 minutes or so I simply couldn’t get my head in the water–it was so cold that every time the water closed around my ears I couldn’t breathe.  It was probably partly from the temperature and partly from my own nervousness at ‘seeing’ what was underneath me with my goggles on (I never really want to know what’s down there) that I struggled with this.  And there was also an element of fear because I didn’t know how to swim straight with my head in the water–how was I supposed to see the turn buoys up ahead and aim for them?  But one of the coaches helped me to focus on bringing warm air into my sinuses before I rolled my face into the water, and blowing that out more actively which each stroke rather than holding my breath.  By doing that I was finally able to get my head in and make progress (it was also much less exhausting than trying to stroke with my head out of the water).  And, by the time two hours had passed, I’d put in some really good laps out on the water and had improved markedly.  By the end it was pretty easy to swim the length of the Newport jetty and back.

Perhaps the most important thing I learned from the experience: if I’m going to spend a lot of time in the water I’m going to need a wetsuit (despite my confidence that I already spend enough time in the ocean that I’m acclimated to the cold water temperature).  It took more than an hour after I returned home to get warmed up again after my time out there–my fingers and toes were still numb long after the rest of me was thawed out.  I’d also like to find a swimming buddy who wants to make a habit of early-morning ocean swims.  Once I have a wetsuit I could imagine that this would become an important part of my training regimen.

And finally:  as I was walking back through the waves to the beach (and struggling a bit to get my feet under me in the shifting sand), one of the coaches scolded me a bit:

“Never turn your back on the ocean,”  she explained.

I realized in that moment that I had no fear of the waves coming up behind me.  I laughed it off–telling her that if I fell in, there was hardly any damage done (I was already cold and wet).  And while I’m sure her advice was sound and I should keep it in mind for times that I’m alone, but I like the surprise (or anticipation) that comes from letting the ocean pummel me a bit.  I rarely feel more alive than when I’m being rocked to and fro by the rhythms of the water…

*I’m not necessarily prepping for a triathlon, but I am in the midst of setting some ambitious athletic goals and this morning’s swim was part of that process.

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  🙂

On powering down…

As I packed my suitcase for this trip, I remember pretty distinctly the moment that I packed all of my power cords–checking to make sure that I had phone charger, iPod charger, and laptop cord (all necessities for a technology conference). And it wasn’t until last night that I realized which power cord I forgot–the one that powers me (it charges the battery in my bionic knee). I don’t actually know how long my battery will last, never having pushed it past 48 hours before. But I’m a few hours over that now and still going strong so maybe I’ll be pleasantly surprised and have power until I get home in 2 days (but I doubt it).

About 15 minutes before the battery goes dead my leg will chirp a few times and vibrate (like a phone). After that, the knee will go analog–maybe something a bit similar to losing power steering in your car. The pneumatic will go stiff and it will be difficult to bend the knee at all.

I’ve never had to walk with my leg like that, much less traveled with a stiff knee. It’s sure to be an interesting experience–a good reminder not to take my bionics for granted. And I’m feeling really happy right now that I opted for a ‘more legroom’ seat for the flight in the way home…

UPDATE:  My battery died just shortly after take-off on the plane ride home (apparently not disrupting the navigational system of the plane as it buzzed and chirped to let me know that it was dying).  I still can’t believe that it lasted while I traveled for four days, but I’m so glad that it did!


Monday morning I found myself in Zurich, as an unexpected but pleasant detour on my Europe trip. It was the day that the full force of jet lag hit me, so I was walking around in more than a bit of a mental fog. Fortunately as I breakfasted with a local friend (@chanson), she showed me the sights without my having to think too deeply about where we were headed…

And for lunch I met with a friend that I hadn’t seen since I was 14–someone who knew me when I was diagnosed with cancer, lost my leg, and underwent chemotherapy. I asked him what he remembered about that time because my memories are so dim and fragmented. We talked a bit about what it was like as I lost my hair and became sicker and sicker.

“it was just so sad, we were all so sad,” he said.

Then he recalled a clear memory of seeing me in the hallway at school one day, when someone was carrying me because I was too weak to walk. He said that even though I had to be carried around the school, I was happy.

“You were always happy,” he affirmed. And then the conversation moved on to a different topic.

It wasn’t until later that evening, long after I’d moved on from Zurich and was on the next leg of my trip through the Alps, that I remembered that May 21st, that Monday that I met up with my friends, was the anniversary of my cancer diagnosis. 28 years ago. 1984.

Lots of tough things have happened since then…many long dark nights and many days filled with fear. But I’m still happy and expect that I always will be.

Echoes from the past…

I was re-reading some of my older writing recently in preparation for an art workshop at UCBerkeley this week and found this old recording of me reading my creative nonfiction story Pose [pdf download].

How odd it sounds to me to hear my voice.  Like it’s me, but not me.  As I listen I hear things in the story that are threads that I can pull out and see continuing into my life now.  But I also hear so many things that have changed.

Recently I was interviewed by a researcher who’s using my blog as part of her dissertation.  We talked a lot about why I blog and why I share what I do publicly.  One thing that struck me from that interview was how important it is to me to have mobility and how much I stress that in what I write about here.  That I can go and do so many things now, when there was a time that I couldn’t even take one step (a piece of that story is told in the recording that I link to above), is utterly remarkable to me.  I can remember not even being strong enough to take one step.  Not a one.  Even now, sometimes when I step out with my prosthetic leg I ‘feel’ what it was like not to be able to shift my weight onto the foot and propel myself forward.

I was just a bit younger than Catgirl is now when I re-learned to walk.  That wasn’t so long ago.

*Above: an old photo to illustrate a post about the past. Showing me and a toddler-Catgirl posing for the camera while on an adventure to the Marconi Museum (a funny story behind that: I thought we were going to a museum about the history of the telegraph. Turns out that the local Marconi museum is all about automobiles. We ended up enjoying the museum despite the shift in expectations…)

On being a Digital Human

This is a ‘classic’ post that seemed worth revisiting for the “Day of DH,” while I’m contemplating my own identity as a cyborg and the price I pay for that luxury.

Sometimes I make jokes about being a “bionic woman” or a “cyborg.” Having a prosthetic leg with a computer-controlled knee joint lends itself to such comparisons. Truth be told, the first thing I’d reach for if there was a house fire in the middle of the night and we needed to exit quickly, wouldn’t be the family photo albums. I’d reach for my robotic leg. It would make sense, given that the leg cost as much as a luxury car. And, of course, because it’s essential for my mobility.

I’ve been robotic for about three years. When I first heard that my insurance would pay for a computerized knee joint, I was thrilled to adopt the technology. I knew that it meant more stability, fewer falls, and a more natural gait. My prosthetist duly warned me not to get it wet, to charge the battery every night for at least three hours, and to notify him at the first sign of any malfunction.

My kids were thrilled with my leg and its robotic possibilities. We wondered what might happen if an evil genius reprogrammed my leg and forced me to rob banks or steal diamonds? We giggled long and hard about that scenario. The first time my battery started running low, I was standing in a grocery checkout line with my son and daughter. We heard the telltale beeps and I felt the vibrating sensation like a cellphone ringer, notifying me that I had 10 minutes to get my leg plugged in or I’d lose power altogether. We raced home and made it just in time. The adventure was more thrilling than a car chase scene in a spy movie.

Some days, however, I feel guilty about owning a leg that cost more than fifty thousand dollars. I think of my limbless sisters and brothers in other circumstances and I realize that dozens—if not hundreds—of low-tech limbs could be purchased for the price of my computerized leg. And I contemplate the thousands of new amputees returning home from Iraq, and those people throughout the world who live in daily fear of loss of life and limb.

Last year my leg malfunctioned while I was traveling in Asia, perhaps a result of using a faulty power adapter for charging my leg. Though there was no way to get the computer repaired during my trip, I was able to continue my travels with my knee stiff–walking as if wearing a cast. Despite the impairment, I carried on with typical tourist activities: scaling the Great Wall, strolling through the markets, touring gardens, and do forth. Nearly every place we visited there were beggars, many of them amputees. I knew I needed to avoid giving handouts or I would be besieged by dozens of people asking for the same. So I kept my hands in my pockets and looked into their eyes and felt heartsick and smug. Contemplating the price that bought my mobility. Feeling my own betrayal.