Category: amputee

  • So much to say….

    So much to say….

    I really really really want to write a long blogpost about my experiences from this past week and my meetings with scholars in NorCal.

    But….

    I am home. And I just need to be home for a few hours.

    And…

    I have so much work calling my name, it might be a few days before I get to share all that I’ve learned with you.

    In the meantime, let me share just one little thing. Last week while I was staying with my friend Barbara, we decided to go rock climbing at Mission Cliffs. It was sort of a spontaneous adventure and because I didn’t have my beach/sport leg on hand, I climbed as a uniped. And you know what? It felt so right. I clambered up the wall face faster than ever before–hopping from one “hold” to the next with my one foot, and using my arms to pull me up each time. I felt so free and strong hanging on that wall and now I can’t wait to go back and try it that way again. I didn’t get a picture of myself up on the wall last week, but here’s one of me climbing bipedally from a few months ago…

  • cumbersome

    Have you ever used crutches? If so, you know just how cumbersome they can be. If you’re not actually walking with them at the moment, they’re either underfoot tripping someone or they’re leaning against a wall and in an inconvenient space. They’re also pretty hard to stow in most compact cars.

    One of the things that makes travel a challenge for me is that I always bring crutches along. Because if I don’t have a set, I’m likely to be in a circumstance where I’ll lose my mobility. Like maybe I’m staying in a hostel and the bathroom is more than a few hops away from my bed. Or maybe I want to swim in a pool and there’s no dry safe space for me to stow my bionic leg within an easy skooch from the pool (and given that it costs $25K for the knee alone, it’s not worth risking some random splashing). Or maybe (just maybe) I want to spend some time at the beach and get my foot wet. In any of those circumstances I really need the crutches.

    But carrying crutches around along with luggage is such a pain.

    On my last speaking stint I arrived the night before and stayed in a hotel so I would be fresh for the next day’s talk. But because I was checking out of the hotel on my way to the talk, I had to bring my luggage with me. Which also meant bringing my crutches. It was more than a bit awkward to arrive at my speaking engagement with an overnite bag, crutches, and my presentation materials.

    And this next trip that I’m going on to the Bay Area, I’ll be moving from one sleeping place to another at least three different times in one week. And each time that’ll mean using public transport with crutches and bag(s), perhaps lugging everything along to conference events and campus visits. I keep trying to figure out some way to not have to carry those crutches along every time, and….I think there isn’t one. I feel so terribly whiny admitting my annoyance at those crutches.

  • If this is you….

    If today you found yourself curled up on the couch after lunchtime, indulging in novel-reading, and while reading, there was this tender conversation between two soldiers–one who’d only just barely had a finger amputated and one who had lost a leg long ago but was dying of consumption…

    And if when the younger, now-nine-fingered soldier handed the dying soldier his missing finger for it to be buried along with the dying soldier, you started bawling and had to put the book down.  Because if this is you, you realized that so rarely had you ever read a scene that captured the loss so well.  And when older soldier explained to younger one that he would still feel his finger there–even decades after it was gone–you wiggled your phantom toes a bit and remembered that you feel that way, too.

  • embodied


    self-po, originally uploaded by pilgrimgirl.
    In one of the more important Mormon temple rituals, your body is washed with water and anointed with oil. This washing and anointing is mostly symbolic–water and oil are only touched to a few points on your skin as sacred words are repeated by the officiants. However, what is most memorable about this ritual, is that the interaction happens after you remove all of your clothing.* The only item allowed to be worn is a wedding ring. For modesty’s sake, your body is draped in a white sheet throughout the washing and anointing process.

    When I received this ritual, it didn’t occur to me to remove my artificial limb. Most likely that was due to the fact that I wouldn’t have been ambulatory without it, and also because I was not sure exactly what the “rules” were about such things and no one clarified them for me (for the most part, these rituals are not explained beforehand, due to their sacred nature). Since then I’ve learned that women with breast prosthetics can choose to wear them during the ritual. I’ve never heard any definitive word on the wearing of artificial limbs, but I suspect that it is allowable.

    Because of the staging of this ritual, it was not evident to the recipients that I was wearing an artificial leg until it was nearly completed, when the officiant bent down in front of me to bless my legs (while I was seated on a throne-chair). After undergoing the washing and anointing a few times, I learned to catch the gaze of the officiant as she reached out to touch my not-real leg. There was often a pause. Usually a knowing glance was exchanged between us as she continued on with the script of the ritual (were she to speak words other than those prescribed, the ritual would be deemed ineffective and would have to be repeated according the prescribed pattern).

    In the moments after the ritual, as we waited for me to be escorted by an officiant to the next step in the process, there was often a moment for some whispered conversation. Usually the officiant would mention something about my leg, asking how did I lose it, or commenting that my prosthesis looked very lifelike (which was back in the day before I chose to let my robotic innards hang out).

    Those ritual moments, are, for me, emblematic of how I view my relationship to my prosthetic leg. It seems as much a part of me as my tongue, or my eyes, or my liver. That I take it off at night and lay it next to my bed, doesn’t make it any less “me.” That it is a thing of metal and plastic and vinyl, doesn’t make it any less familiar than my other leg and foot. That it sometimes makes an audible whirring adjustment sound when I walk through quiet spaces, is no different than the familiar creaks of my organic joints. That its parts are fabricated from components that come from all over the globe, and are assembled by workers in Germany and are fitted to my body by men in Orange County, doesn’t make it any less me. Perhaps what makes it feel the most ‘foreign’ is the attention that my leg garners as I move through public space. It is the reaction of others that reminds me that I am different.

    I suppose that being a cyborg comes “naturally” to me. I couldn’t live my life normally without the microprocessor in my knee, or the metal crutches that I use when I’m not wearing my prosthetic. These tools are so much a part of my life that they are my life. They are familiar in the same way that my hands are on my keyboard. I don’t think each time I type that I am sending letters from my fingertips to the screen and out to you. I just do it. Like that, I just walk. And stand. And move. The way that I do.

    *Note: recently there were some changes to this ritual that include less physical interaction between officiant and recipient, and also how much clothing is removed beforehand. I am discussing how it worked back in 1992, when I first participated.

  • on pain…and memory

    A conversation with a friend about surgical pain prompted me to resurrect this older post that never made it out of my drafts folder.  It’s a rather stream-of-consciousness piece, a musing on my own relationship to pain.

    “It’s kind of freaky the way you smile when you tell me these things,” he said, stopping me mid-sentence.  I was telling the story of my leg infection and had just launched into the part where I was explaining the surgery.  I had lifted up my left pantleg to show the scar and was explaining the debriding of the wound.

    I was silent for a moment, rehearsing the last few moments in an attempt to find that spot in my story where I’d left off.  I dropped my pantleg.

    I’d chosen him as my therapist purposefully.  A Jew (not a Mormon or a Christian).  A musician.  One of the few people whose library could rival mine, books stacked in piles on cinderblock shelves.  Older than my father and nothing at all like him, with curly hair going every which direction.  So I sat on his couch with my legs crossed, not even sure why I was there except that it seemed I had work to do.  A black fog inside my head.  Fragility.  Fatigue.  A desire to put some things behind me.  And to figure some things out.  He had a swimming pool in his front courtyard and yet he confessed to me during our first visit that he didn’t even know how to swim.

    I felt my smile widen on my face again and wondered when it would be appropriate to continue my tale.  I wasn’t sure if I was supposed to continue, though.  Maybe we were supposed to stop here and talk about something else.  Something deep.  I waited for him to signal me, to tell me what was supposed to happen now.

    “Why are you still smiliing?” he asked.  I didn’t know.  The smile went with the story.  Hand-in-hand.

    *

    I curled my body into a tight ball, fitted into the hollow of John’s body as we lay next to each other in bed, the layers of comforters over my head.  It was one of those cold nights.  When no amount of clothing would keep me warm.  He took my icy fist in his and tried to spread out the fingers to alternate with his own.  But my instinct to ball my fingers made me resist.  As I shivered he pulled at my various layers of clothing and uncovered the stump of my right leg, knowing it would be the coldest part.  He clasped the soft tissue in his warm hands and held firmly, passing heat from his body to mine, so I could sleep.

    *

    “Jana’s complaining of pain again,” I read at the top of the next page as I turned the microfilm knob. I recognized my nurse Penny’s handwriting.  Larger and loopier than most of the other writing on the records in the medical files that I was perusing in the microforms room of the Children’s Hospital.   After reading page after page I realized how much I liked when the nurses used my name:  Jana slept all afternoon, Jana seems in good spirits today,  Jana took a bath. Jana’s friends from church came to visit. Jana’s in pain again. So much better than The patient slept all afternoon, The patient took a wheelchair ride outside. The patient says she wants more demerol.

    There was one common refrain in nearly every entry:  Jana’s in pain.  Jana’s in pain again. The patient is complaining of pain.

    I recalled the various landmark events of that time: the surgeries, the emergencies, the bloodcell counts, the benchmarks, the dirty scans, the clean scans.  And that horrid wallpaper.  The ridiculous pastel pattern of abstract llama-creatures with knees slightly bent, marching in static rows across the walls. I remember grabbing the cold metal railings of the bed and staring at that wallpaper.  Screaming, as the needles go in.

  • perspective

    I’ve been thinking a lot lately about the impact of “perspective” on the way we view our lives. For example, if viewed through a particular point of view, my life would look like this:

    -i had cancer and lost my leg. i’ll never run again, and walking is often painful. people stare and say rude things to me, especially if i’m not wearing my prosthesis. the simplest of things can be hard. i fall sometimes, which is embarrassing. it’s not easy to get health insurance. it’s also quite difficult to be employed with a visible disability. everything is harder for me than for most people. the chance of me getting cancer again is high, due to the types of treatment that i had. i feel unattractive because my body is scarred and assymetrical.

    Or through a different lens, I could view it this way:

    -Having cancer and losing my leg hasn’t held me back in any significant way. I’m still healthy because I can exercise and eat well. I have medical insurance that allows me to buy hi-tech prosthetics to increase my safety and agility. Having a disability helps me to meet more people than I would otherwise, and has enriched my life as a result of a wider-ranging social circle and new opportunities. There’s rarely anything I can’t do if I put my mind to it and try hard. I have a good parking space nearly everywhere I go & strangers tend to help me if/when anything goes awry with my leg.

    My days tend to be a mix of both ways of viewing my life. Sometimes I get stuck in feeling sorry for myself, and other times I feel as though I could conquer the world. I think I tend to the latter perspective–life feels very fragile and brief, so I don’t want to fritter it away feeling bad about the ways things have turned out for me.

  • rappin’

    This video is so chock-full of great amp-humor, I hate to even write much to accompany it. Those who know me well will really “get it.”

  • water-therapy

    This post is one of a series to support my 39th Birthday Wish. 

    After my amputation, the surgeon put a cast on the stump of my right leg to protect the wound as it healed for the first few weeks.  He replaced the cast occasionally as the swelling decreased.  The day I got the cast off for the final time, the first thing I did was head to physical therapy in the hospital’s swimming pool.  What an amazing feeling that was to float in the water after weeks of being confined to hospital beds and wheelchairs…

    I still feel more at home in water than on land.  Here’s a picture of me taking a leap into Walden Pond last fall:

    backfloat

    Having lost my leg at such a young age, there have been some times I’ve felt the loss very keenly. It’s hard to explain what it feels like to have such a significant part of oneself gone, but there’s an ache that’s similar to what I’ve experienced when a loved one dies. Last fall when I was in Denver for an academic conference, I did something rather unusual–I visited the hospital where I had my cancer treatment, and asked to view my medical files. I learned many things from going through those files, but the most profound moment was when I received the pathology images that included pictures of my leg after the amputation surgery. The images showed the extent of the tumor, via cross-section of bone and tissue.

    To work through the complicated emotions that I felt about those pictures, I went to the pool for a long swim, taking the laps slow and hard while my mind chewed on what I’d seen. As the light cast dappled patterns in the water around me I felt past and present collide: I was a little girl with two legs, I was a young teen swimming for the first time after her surgery, I was a grown woman who was still making sense of her loss. I was swimming, stretching, remembering, and moving on.

  • On Turning 39…

    This post is one of a series to support my 39th Birthday Wish. 

    Turning 39 feels awfully old.  And I know most people, especially women, feel wearied by this number–with 40 looming just around the corner.

    But here’s the thing: For a few years I doubted whether I would even make it to see my 15th birthday.  That I’m still kickin’ at 39 is nothing short of a miracle to me.

    Picture at left is of me during chemo.  I’m wearing a wig and a favorite purple sweatshirt that a friend personalized for me. 

  • The Ocean & Me



    This post is about my experiences with the ocean, and is one of a series to support my 39th Birthday Wish. 

    My maternal ancestors come from the Isle of Man, a peculiar piece of land that’s situated in the Irish Sea. My ggggrandfather and his kin were ship captains, and were certainly smugglers like most who hailed from Manx ports.  A few years ago when we visited the Isle we saw his warehouse in the main port city.  We also saw the ancestral farmlands and the parish cemetery where nearly every headstone had a familiar name.

    I didn’t see the ocean myself until I was 14 years old, having grown up in Oklahoma and Colorado.  I’d just completed a year of chemotherapy treatments and my family planned a HUGE trip to California.  My first glimpse of the ocean was from PCH, driving towards San Diego from LAX.  By that time I’d already lost my leg and was ambulating rather precariously using crutches and an ill-fitting prosthetic limb.  I don’t recall actually dipping my toes into the Pacific during that trip, though it’s possible that I did.  Much of my memory of that era is long gone–which may be a blessing given how tough a time it was for me.

    Shortly after that trip to California my family relocated from Denver to Bakersfield, which meant that we lived close enough to visit the beach a few times every year.  However, because none of my prosthetic limbs were water-proof (or even water-resistant), I had to use crutches when I wanted to be on the beach.  And the logistics of trying to “crutch” in the waves was so frustrating, I never went more than shin-deep in the ocean until about two years ago.  Isn’t that crazy?  My first swim in the ocean was at age 36!  That summer John & the kids helped me do so by fetching my crutches back and forth as I needed them to enter & exit the ocean.  And I had the opportunity to swim in both the Pacific and the Atlantic ocean that year because of our family vacation to the outer banks of North Carolina.

    me

    When I decided to take up the sport of outrigger canoeing, I met with my prosthetist and discussed the possibility of crafting a waterproof leg that I could wear in and out of the canoes.  He’d never made a leg like the one that I wanted, but was willing to see what he could come up with!  He ended up cobbling together a “pirate” pegleg with an ankle joint at the knee (the only waterproof joint he could find that could be locked into both straight and bent positions).  There’s a little knob that I turn at my knee when I transfer from walking to sitting in the boat, that locks the knee in either position.  Perhaps the most questionable part of this leg was whether it would stay on when I fell out of the boat or needed to jump into the ocean (such as in 9-man season when we change seats for the long races).  The first time I tried was on a “huli drill” where I had tip our 6-man canoe to practice the recovery process.  I was in charge of tipping the boat because I was the steersman.  I can’t tell you how scared I was about that–not even knowing if my leg would stay on once I fell into the water, much less knowing how it would work to swim in the ocean with it attached to my body!

    But what I learned from my huli drill & from the other times that I wore it in the ocean, was that leg does stay on and that it’s quite a gift to be able to walk autonomously from beach to water.  Each time that I’ve jumped out into the waves and started swimming is a miracle to me.  I don’t take it for granted even for a second!  It took me 36 years to swim in the ocean and when I did, it felt so “right.”

    I suspect that my love for the ocean runs gene-deep, coming from my island ancestors who sailed the seas. But whatever the reason, when I’m in the ocean I feel connected to the universe in a way that I’ve never felt in any other space.  With the water buoying me up, the rhythm of the waves rocking my body, the sun warming my skin, and the thrill of the unknown below…it’s there that I feel the complete perfection of my life and this world.

    C, Suz and me in the waves
    Picture of me in the Atlantic Ocean with GameBoy and my little sister.

  • The Ocean & Me



    This post is about my experiences with the ocean, and is one of a series to support my 39th Birthday Wish. 

    My maternal ancestors come from the Isle of Man, a peculiar piece of land that’s situated in the Irish Sea. My ggggrandfather and his kin were ship captains, and were certainly smugglers like most who hailed from Manx ports.  A few years ago when we visited the Isle we saw his warehouse in the main port city.  We also saw the ancestral farmlands and the parish cemetery where nearly every headstone had a familiar name.

    I didn’t see the ocean myself until I was 14 years old, having grown up in Oklahoma and Colorado.  I’d just completed a year of chemotherapy treatments and my family planned a HUGE trip to California.  My first glimpse of the ocean was from PCH, driving towards San Diego from LAX.  By that time I’d already lost my leg and was ambulating rather precariously using crutches and an ill-fitting prosthetic limb.  I don’t recall actually dipping my toes into the Pacific during that trip, though it’s possible that I did.  Much of my memory of that era is long gone–which may be a blessing given how tough a time it was for me.

    Shortly after that trip to California my family relocated from Denver to Bakersfield, which meant that we lived close enough to visit the beach a few times every year.  However, because none of my prosthetic limbs were water-proof (or even water-resistant), I had to use crutches when I wanted to be on the beach.  And the logistics of trying to “crutch” in the waves was so frustrating, I never went more than shin-deep in the ocean until about two years ago.  Isn’t that crazy?  My first swim in the ocean was at age 36!  That summer John & the kids helped me do so by fetching my crutches back and forth as I needed them to enter & exit the ocean.  And I had the opportunity to swim in both the Pacific and the Atlantic ocean that year because of our family vacation to the outer banks of North Carolina.

    me

    When I decided to take up the sport of outrigger canoeing, I met with my prosthetist and discussed the possibility of crafting a waterproof leg that I could wear in and out of the canoes.  He’d never made a leg like the one that I wanted, but was willing to see what he could come up with!  He ended up cobbling together a “pirate” pegleg with an ankle joint at the knee (the only waterproof joint he could find that could be locked into both straight and bent positions).  There’s a little knob that I turn at my knee when I transfer from walking to sitting in the boat, that locks the knee in either position.  Perhaps the most questionable part of this leg was whether it would stay on when I fell out of the boat or needed to jump into the ocean (such as in 9-man season when we change seats for the long races).  The first time I tried was on a “huli drill” where I had tip our 6-man canoe to practice the recovery process.  I was in charge of tipping the boat because I was the steersman.  I can’t tell you how scared I was about that–not even knowing if my leg would stay on once I fell into the water, much less knowing how it would work to swim in the ocean with it attached to my body!

    But what I learned from my huli drill & from the other times that I wore it in the ocean, was that leg does stay on and that it’s quite a gift to be able to walk autonomously from beach to water.  Each time that I’ve jumped out into the waves and started swimming is a miracle to me.  I don’t take it for granted even for a second!  It took me 36 years to swim in the ocean and when I did, it felt so “right.”

    I suspect that my love for the ocean runs gene-deep, coming from my island ancestors who sailed the seas. But whatever the reason, when I’m in the ocean I feel connected to the universe in a way that I’ve never felt in any other space.  With the water buoying me up, the rhythm of the waves rocking my body, the sun warming my skin, and the thrill of the unknown below…it’s there that I feel the complete perfection of my life and this world.

    C, Suz and me in the waves
    Picture of me in the Atlantic Ocean with GameBoy and my little sister.

  • My 39th Birthday Wish

    Many of you probably remember my birthday wish last year, where we raised over a thousand dollars for HandReach to purchase prosthetic limbs for Huang Meihua, a survivor of the Sichuan earthquake.  What a wonderful experience that was, particularly because I was marking the 25th anniversary of my cancer diagnosis with that event.

    I wanted to do something similar this year, and have thought a lot about what might be an appropriate organization to support with birthday donations.  Because here’s the thing:  I have everything I need and want.  And my birthday would be so much more meaningful if we could “gift” something together.  So I’ve got a plan…

    But first, a story:  Nearly two years ago when I was just starting to recover from my leg infection and wanted to “get healthy” again by exercising, I was chatting with my neighbor.  I was telling her how frustrated I was with nearly every athletic activity that I’d tried, because I always had to ‘adapt’ the activity to me–to do different poses than the rest of the yoga class, to ride a heavy 3-wheeler instead of regular bicycle, and so forth.  I told her that I wanted to find a sport that I could do without having to alter it for my different body.  She then told me about some of her friends who had lower-limb issues (from  amputation to blown out knees to nerve damage) who were outrigger or dragon boat paddlers.  She then suggested that I try it out and told me about her team (IMUA Outrigger Canoe Club).

    Well, most of you have already heard what happened after that…and you have been all-too-kind in indulging my paddling passion in the meantime…

    So here’s how this is relevant to my birthday:

    First and most importantly, I want each of you to think about someone you know that should know about paddling, and share my story with them.  Tell them about the one-legged 39 year-old blogger that you discovered through the magic of the internet and let them know that paddling is the perfect sport for someone who has lower limb issues (or for anyone who loves the water and wants to move their body!).  Send them the link to my website.  Spread the good word of the paddle far and wide.  Really, truly, this is what I most want for my birthday.  I want to reach the folks out there who need to know that outrigger canoeing just might be the perfect sport for them.  Here are some relevant links that you could send them:

    My first race–when our boat tipped over just after the starting line

    Learning to steer the canoe 

    On Cancer, Canoes, & Connectedness

    My thoughts after racing from Newport Beach to Catalina Island

    So share this with your friends and drop a comment below to let me know how it went.  I can’t wait to hear about it!  To know that others might find paddling as satisfying as I have, would be the perfect gift.

    Second:  As I’ve become more involved in the outrigger community, I’ve learned that there are some “Adaptive” racing opportunities out there for those of us with disabilities.  For example, you might remember that originally I’d planned on spending birthday #39 in New Caledonia, paddling for an Adaptive team at the World Va’a Champs.  But our racing division was canceled because there weren’t enough Adaptive teams signed up for the event.  What I’ve learned from this is that I don’t really need to paddle for an Adaptive team. Outrigger is a sport the ‘levels the playing field’ and I can compete with bipeds just fine.  And this is where the second part of my wish comes in…

    My Team, IMUA, has three lower-limb amputee paddlers.  When I showed up on the beach for practice for the first time, no one suggested that I wasn’t “able” enough to compete with the team.  Though team members were more than willing to make sure that I could get in & out of the boat okay (which, before I got my waterproof prosthesis, meant stowing my crutches on the beach above the tideline as we launched), there was never a moment where anyone suggested that I needed to be on a different team because of my disability.  And the fact that IMUA has three amputee paddlers when I don’t know of any others in our league says a lot about our team’s openness.  Not only do we have amputee paddlers, but we have paddlers with bodies of all shapes and of all ages (from 7 years-old to 70 years-old!).  Some of us are elite athletes and some of us are just keeping fit.  The diversity of the team is its biggest strength!

    So if you’d like to give a donation to celebrate my birthday, I’m asking that you donate to IMUA in my name, to carry on the good work of the team that has embraced me this past year.  Our team is doing so much good in the world of paddling–from sending a Senior Masters Team to race in Hawaii this week, to developing a full-fledged Children’s program that includes 3 groups at different age levels (my kids’ teams), to being the most enthusiastic group at the local races.  To sweeten the deal, for everyone who donates $39, I’ll take you out on the water for your own personal outrigger lesson!  We’ll go out for a few hours in the Newport harbor on 1 or 2-man outrigger canoes.  If you’re not local, we’ll take a raincheck for the next time you’re in SoCal (because everyone tends to get down here for one reason or another!).  My birthday goal is to find 10 friends who’d like to donate $39 for a personal paddling lesson.  (Note: If you want to donate, send me the funds via PayPal to janaremyATgmailDOTcom.  I’ll have a button up on my site in a day or two where you can make direct donations to the team, but until then, just send the money to me and I’ll pass it along to the team).

    So it’s really simple, friends.  Don’t bother with birthday cards or cake or anything like that.  Just tell my story to someone that you know and pass along the link to this post and/or some of my other outrigger posts.  And if you’re ready to join in the fun, pledge some money and we’ll get you all set up for your very own lesson.  By doing this, you’ll give me a super gift.  Because if we can share this sport with just a few friends and friends-of-friends who really need to hear that there’s the perfect mode of exercise out there for their particular body, then I’ll be thrilled!  That will make my day and my year just perfect!