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:



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.



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.


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!

just one of the reasons that I'm not blogging as much these days...

IMG_9577, originally uploaded by pilgrimgirl.

birthright

There are some things that I don't like about this video--such as the belaboring of the prep before surfing. But there are some things that I love about it. Like that moment where the first wave passes over him and all the sand is washed away...it's just perfect. And then, seeing him in the water moving so fluidly...I know that feeling so well.

How can I explain what it means to be in water? To be the only place where gravity doesn't pull and tug in ways that make movement difficult? In the water, on the water, under the water--I am a fish and my legs (or lack thereof) no longer matter.

The other thing I like about this video--how it shows the innovative things that Michael does to allow him to surf--such as balancing the end of the board on the fence near the car...So cool.

BIRTHRIGHT from Sean Mullens on Vimeo.

the phantoms

Alice's garden, originally uploaded by pilgrimgirl.

Let me just say first that I'm not writing this because I'm seeking sympathy, or pity. It's just one facet of life as an amputee, and since one of my primary aims of blogging here is to discuss the experiences of my different body, that's why I'm writing this post.

A few times a year, I get the phantoms. I've mentioned them occasionally on my blog before. There's not much of a pattern to when they happen, except that I've noticed they are more likely to occur when I'm dehydrated or sick. They were pretty bad when I was pregnant, too.

Generally, I don't think being an amputee is all that painful. As long as I've got a prosthesis that fits well, my pain level is probably not all that different from anyone else who's heading towards middle-age. Of course, when my leg isn't fitting well or when I've got pressure sores or rashes on my stump, that's a bit of a different story. But I'm lucky not to be experiencing any of those problems right now.

The past few days we've had a cold/flu bug going around our family. Yesterday I pressed on with my regular schedule despite feeling pretty cruddy. And then it hit me right around dinner time--the nerves in my right leg started spasming. The pain level is pretty close to what I felt when I had labor contractions before my babies were born. It starts in my leg and causes my entire body to shake for a few seconds. To be fairly descriptive of how it was feeling yesterday, it was as if someone had poked a metal wire up along the side of my femur bone and then ran a jolt of electricity through that wire every few minutes. Oddly, the pains are different each time it happens. It used to feel more like my toes were being twisted off one-by-one. Or that someone was ironing the bottom of my non-existent foot.

There are a few remedies that work--walking helps, as does some pressure on my stump or a warm shower. But really the only thing I've found that truly helps is a dose of a strong muscle relaxant. So that's what I took last night, and then slipped into sleep, only waking occasionally to note that the spasms were becoming weaker as the night wore on. When I awoke this morning I felt stiff and sore in my right hip, with just a very faint metallic-tingly feeling. As if my leg had "fallen asleep" and was just waking up.

I don't know how other amputees experience phantom pains. Those I know, I've never thought to ask. It's not something that I think about very often, or that impacts my life in any huge way. It just happens sometimes. And I don't think I'm particularly heroic for having endured phantom pains--we all have these little tricks that our bodies play on us once in awhile. Whether it's lower back pain, that stiff elbow, or the arthritis that gets to us when it rains. I figure we're all just doing the best we can and some days that means we have to take it easy for awhile.

on photos and synchronicity

This picture was just sent to me via Facebook by a cousin (she's standing in the center of the picture). I'm on the right wearing my favorite-at-the-time bright yellow Esprit shirt. I'll bet that I'm wearing it with my also-favorite bright green cropped pants. Judging from the length of my hair, this was the spring of my freshman year. Dad is on the left. He didn't smile very often, or at least he usually only smiled with his eyes, so this is a special photograph, indeed. It was probably taken on one of my trips back to Denver to have medical check-ups to confirm my cancer remission. Perhaps Dad's smile is reflective of his joy that all went well at the hospital.

Not to change the subject too dramatically (and you'll see where I'm going here in a minute)...but have I ever mentioned that I have the world's best postman? Not only is he always smiling and seems to just love his job, but he does so many little things to make sure that we get our mail. When I've been ill, he's even brought it to the door rather than leaving it at our box. He makes sure that everything delivered to our old place across the street makes it to our current home. And today, when I walked up to the door and saw a note on my door that I missed a package I was super-bummed. It's an important package that I've been waiting for for weeks--and I didn't want to wait another day. So you can only imagine how much I wanted to hug this man when I saw his truck pull up in front of our door and heard him calling out my name. He explained that he'd seen me drive around the corner as he was going the other way and came back because he knew that I'd want my package. If I'd had any money in my pocket, he would have received a very generous tip right then. But he's the kind of person who doesn't do that kind of thing for a tip and that's what makes him so very cool.

So the package...
It's a slim manila envelope bearing the return address of the Denver Children's Hospital. These are the pathology photographs that I requested weeks ago, but had to jump through many hurdles to procure. I unseal the envelope and pull out a small stack of color photos tucked into the three-fold crease of a xeroxed pathology report. The first photo is of my right leg. My eyes focus in the center of the image, on the biopsy incision on the side of my knee. And I realize that I'd forgotten about that, only remembering the smooth pink scar that ran down the front of my kneecap from a fall in second grade. The biopsy wound was just a few weeks old when my leg was amputated, which is surely why I forgot. And a memory surfaces of the icy walkway that led to the front door of my junior high school, and how I was terribly afraid of falling as I navigated it on crutches, my prosthetic leg more of a liability than an asset in the Denver winter.

But it's 90 degrees here today, the Santa Ana winds having finally hit Southern California. I'll bet that there are fires already burning somewhere. And my throat has been dry all day, so dry that it was difficult to carry on a conversation with my daughter after school. The weather widget on my web browser tells me that tomorrow it'll be cooler--in the 60s, even. It's hard to believe that, right now.

my thoughts on open-ness

orange rose, originally uploaded by pilgrimgirl.

This morning I found several new bright yellow roses had opened in my garden. It was my intention to share them with you via a few pictures, but when I turned on my camera I learned that my battery pack was dead. Oops! So here's a photo of an orange rose from a few weeks ago for you to enjoy.

Today I'm thinking about open-ness. It's a topic that I've discussed fairly often on my blog. For example, one of my primary aims in blogging was to discuss my disability in an open and honest way. There's a strong taboo in our culture about addressing physical differences, and it seemed that a blog was a great way to initiate the discourse.

Of course there are risks to being open. When I talk about my experience as an amputee, I'm vulnerable to cyber-stalking by folks who have acrotomophilia (a sexual fetish for amputee women). So at some point I had to decide that the benefits of blogging about my disability outweigh the risks of attracting the wrong crowd of visitors to my blog.

Similarly, my discussions about my spiritual journey have often touched on the taboo. I've been open about my frustrations with the LDS church and my experiences as a marginal member. My attraction to Quakerism has also been an significant thread in this journey and it's been important for me to share that with you, even though my Mormon readers might find it disconcerting. I know that some of my extended family members follow my blog and are saddened to hear that I'm not currently active in the LDS church. But the reality of that is that many of our family members have left activity--it's not just me. And I appreciate open dialogue with family members from both extremes of the faith spectrum. I love hearing about how your spiritual experiences have impacted your life choices. Truly. Now I am not going to tell anyone how to live their lives, but I would encourage those who have something to say to me about the church or any other aspect of my life to feel free to initiate that dialog. I will listen to and respect your thoughts, even if my beliefs are different than yours.

In this process of navigating my journey it's been my aim to be as sincere and honest as possible. I learned long ago that speaking my truth makes me vulnerable to hurt*, but it also helps me to live authentically. I am not one person in a church setting and another person at home. I am not different online than I am in person. I am not ashamed of anything I believe nor of any of my actions.

*and yes, it does pain me sometimes when anonymous folks leave rude comments. I am not made of steel (although approximately 1/4 of my body is a carbon-fiber composite that's pretty rugged stuff).

A FaceBook & Social Media Success Story

As my birthday neared last month I received an email from the Facebook "Causes" application, suggesting that I could put a Birthday Wish on my FB page to gather donations for a favorite charity in lieu of birthday gifts. At first I was reluctant to participate. I tend to dislike FB apps and I don't want to annoy my FB friends with frivolous emails or requests. However, I let the idea gel for a few days and then decided that it might be worth fundraising for HandReach, a non-profit that provides and education and medical care for children in China. When my friend Brecken (who works for HandReach) visited a few weeks ago I felt drawn to her stories of the children who were severely burned or disabled and were in need of prosthetics to replace missing limbs.

So I decided to jump in and do it, despite my initial hesitancy. As I logged onto the application it gave me many options for my "wish," including setting a suggested donation amount ($38 because I was turning 38 years old), sending out individual messages to each of my FB friends, letting the application take over my status messages for the duration of the fundraising, and setting a reasonable campaign goal (I chose $380 thinking that maybe 10 of my friends might want to contribute).

What ensued blew me away.

I met my $380 goal within a few hours, then upped it to $600 and met that quickly, too. I then set the seemingly unreachable goal of $1000 and met that long before my actual birthday. What an amazing experience it was to see the donations and well-wishes pouring in from friends near and far.

Words aren't enough to tell you how much joy it brought to be a part of this campaign and to experience the goodness and generosity of my friends. And I'd call this a tremendous success story for the potential of social media. While I think Facebook and Twitter can be huge time-wasters, they also have HUGE potential for connecting groups of likeminded people for doing good. We saw this with the impact of social media on the last election and I'm sure that we will continue to see its ripple effects in the months and years to come. It's invigorating (even seductive) to participate in these forms of media and to get a feel for their immediacy and power.

After the hoopla of my Birthday Wish was over, one of the developers of the Causes application contacted me about the success of my fundraising efforts. From her I learned that my Wish had earned more funding than most, and they wanted learn why I was so successful. In a nutshell, these were my thoughts:

I picked this particular organization because they give money for medical care to amputees in China--I am an amputee myself so this is a Cause that I'm passionate about and that most of my friends have sympathy for through my experiences. My advice to those who are considering a Birthday Wish is to choose an organization that reflects your own experiences and interests--so your friends will feel invested in supporting your Cause.

One reason I believe I received so many donations is that I not only had FB announcing my Cause, but I also did daily blogposts leading up to my birthday about my Wish, I tweeted the link daily, which was 're-tweeted' by some friends.

I found myself incredibly satisfied with the overall functionality of the Causes application and would encourage each of you to consider a Birthday Wish campaign. I look forward to seeing what Cause would motivate you to forgo birthday presents, and wish the developers of this application the best of luck in their efforts in using Facebook for such positive ends.

with a leg to stand on

Lazy afternoon in the chair, originally uploaded by pilgrimgirl.

The picture above shows Bobette and I hanging out in our favorite spots on the overstuffed purple chair in our living room. At this moment I had my laptop on my lap and I was typing away on a a dissertation-related project. Bobette was doing what she does best: relaxing.

In many ways, my life as an amputee is something I don't think about too often. I get up the morning and put my leg on just like anyone else gets up and gets dressed. It's just part of my daily routine and I'm fortunate to have a high-tech prosthesis that's very comfortable to wear. Lately, though, it's seemed a bit larger in my life because I've chosen not to have a cosmetic cover put on my leg. This means that I attract a lot more attention when I love through public spaces, which is a constant reminder that my body is "not like the others" out there. It's not something I typically mind, but there are some moments when I do feel a bit annoyed by the stares of passersby...

So the other day when I was biking home from the grocery store and my leg came off, it hit home to me just how vulnerable being an amputee can be sometimes. If my leg malfunctions (and there are any number of ways this can happen), I am reliant on the attention of anyone nearby to lend a hand. This happened once while I was traveling in China--my knee jammed while I was on an airplane. And the result was that it was "locked" straight. Now can you imagine trying to sit in an airline seat with a knee that was stuck at a 180 degree angle? Well, I couldn't do it (as you can well imagine), and a kind stewardess ended up offering me her seat in the plane entranceway so I could sit safely as we landed. It all worked out, but it was a quite awkward, to say the least(!).

When my leg came off while I was biking, it wasn't necessarily apparent to passersby because I was wearing long jeans. I suppose they might've noticed that one of my legs was _really_ long all of a sudden. They probably saw me stop pedaling and grab my thigh. They undoubtedly wondered why I stood there for a few moments indecisively clutching my handlebars and wondering what the hell I should do next.

Oftentimes I can just shift some weight onto my prosthetic leg, which will release a little whoosh of air and re-establish the suction seal that secures the artificial limb to my stump. But in this case the suction wouldn't hold for more than a few seconds, and the air was whooshing in and out of the socket with loud burpy/farty sounds as the seal tried to hold.

I ended up coming up with a strategy that got me home. I did a sort of limb dragging zombie-walk with my right leg (my jeans keeping the prosthetic from falling off altogether onto the sidewalk) and I balanced myself with my handlebars--sort of like a 'walker'. The awkwardness was magnified a bit as I attempted to go up a few small 'hills' and perhaps when I crossed a major intersection, but I'm guessing that few people even noticed, or they probably just thought that I'd hurt myself falling on my bike and was headed home. I thought about stopping someone who passed by to ask to use their cellphone to call for help, but after I'd walked about a block (I had about 3 to go), I decided that there wasn't a whole lot that anyone could do anyways--I just needed to get myself home no matter how slow or ungainly that process would be.

So why am I sharing this story with the internets? Primarily because I think it's helpful for folks to know how those of us with disabilities 'make do.' I think we are all more than a bit MacGyver-ish as we solve problems and get things done! Also, I'm sharing this because I'm thinking a lot about amputees right now because I'm raising money for HandReach for my birthday. I have a prosthesis that allows me a lot of mobility and I'd like to help other amputees have this same benefit. So I'm raising money for a 12 year-old girl, Huang Meihua, to get prosthetics for the legs she lost in the Sichuan earthquake. If you can, I hope you'll join in this effort along with me.

:)

signed by AFP

Amanda Palmer signs my foot at secret Los Angeles show, originally uploaded by pilgrimgirl.

Had a spontaneous meetup with rockstarAmanda Palmer this afternoon (at an intimate local venue after she twittered an invitation)...

The whole experience echoed my previous experience with Amanda, but this was far more relaxed and unscripted. We stood at her feet as she played and sang, we all sat around and chatted on some couches during and after her interview with the "After Ellen" show (the episode will air in 2 weeks, we were told).

In all, it was a successful social media experience. A rockstar throws out the invitation for a meetup and John & I decided it was worth the adventure so we went.

I had her sign my prosthetic foot, so she's officially the first artist to take up the call to decorate my leg. She hardly batted an eye when I suggested that she sign my foot and everyone around us thought it an uber-cool idea. The picture didn't turn out so well, but that's what happens with spontaneity, I suppose.

:)

PS: Amanda hugged everyone afterwards as if she were our best friend. I was a bit surprised by the familiarity at first and then just enjoyed it. It must be quite a skill to be able to treat your fans as if each one was someone that you care deeply about. Undoubtedly that is her gift--when she sings it's as if it is just you and her, and that carries through in her post-performance affability.

UPDATE: John's pic of my foot is so much better than my feeble effort...

sporty

Because unipeds can be athletes, too (even those of us who suspected our sporty days were long past). Just sayin'
:)
Pic by John

calling all artists!

Given that my new bionic leg is a blank canvas that needs some attention, I've decided to offer the opportunity for my artist friends to decorate my prosthesis. I'm planning temporary "installations" that will be changed 3 or 4 times per year. While I'm wearing your art I'll feature you on my blog and if you'd like I'll carry your business cards and be a walking advertisement for your work.

If you're interested, drop me a line and we can discuss the details--the medium and the type of art that would work best for the dimensions of the project. Do note that you'd have foot, leg, and thigh to decorate. (no need to be physically present in SoCal, either--I can apply the art myself if you send it to me).

I'm open to all types and forms of art--for example, I could imagine that poetry would work as well as visual art. So many of you, my readers, are incredibly creative and talented--I'd be thrilled to wear your work!

Looking forward to hearing from all of you artistic folks: phddillyATyahoodotCOM. Feel free to forward this link to anyone outside the PilgrimSteps circle that might be interested.

Pic by Gus Greeper from flickr

because there is no recession for a sick kid...

I'm sure you've all heard of St. Jude's Hospital, the world-class medical facility that never turns away a child because they can't pay for healthcare. My biochemist brother David is a researcher at St. Jude's--his lab has a robot that tests thousands of chemical samples for possible therapeutic properties.

Recently he called my attention to this video clip of a teen with osteosarcoma (scroll down and click on the link from the Nov 25 show), the same type of bone cancer that I had at age 12. I know it's a busy season and the economy is awful this year, but if you're blessed with any surplus to share, St. Jude's is a worthy cause. Though I wasn't treated at their facility, they are one of the sponsors of a long-term cancer survivor study that has been invaluable in giving me information about the health issues that I will continue to face because of my high-dose chemotherapy treatments (with their life-altering side-effects).

Pic above is of me back in 1984 when I was undergoing my cancer treatments.

Adaptive exercise: uniped-style

As an amputee I've found that finding ways to do cardio exercise is not easy. I'm not able to run or play sports like tennis or basketball. I can bike, but not for very long distances (due to socket discomfort), and any activity where I get very hot is bound to cause my leg to sweat in the socket and start slipping off, which is painful and can result in injury. Most water sports are out because I have a C-leg that can't get wet--swimming is the exception because I do it sans prosthesis, but I find that it's not convenient on a daily basis because of the time entailed in getting to the pool, showering, and then getting back into my leg.

So with this in mind, when I decided I wanted to "get fit" and healthy after I had sufficiently healed from my recent surgery, I had to figure out a way to adapt an appropriate exercise regimen. I wanted to be able to workout at home for convenience's sake, which added a level of difficulty to finding a good way to exercise. Oh, and also added to the challenge was the fact that I had neither money nor space for any large equipment like a recumbent bicycle or a rowing machine.

I decided on a two-prong approach to cardio fitness. First, I bought an inexpensive mini-trampoline because I had heard from another amputee that she jumped on a trampoline and that it was a good workout. Second, I remembered from years ago a physical therapist recommended stretching using a fitball so I could strengthen my hips and abs (very important walking muscles for an amputee). I realized that I could "jog" while sitting on a fitball by recreating a jogging hip/arm motion. I don't wear my prosthesis for either exercise. I have added amazon links to both of these items (above) in case you want to purchase something similar, but you should know that both these items are often available via freecycle and craigslist for free.

My typical daily cardio workout is now a 5-10 min jump on the trampoline and a jog on the ball for 20-60 min. A word of warning to any amputee attempting to jump on a trampoline: I do so while having the tramp near a wall or doorway so I can easily reach out and stabilize myself if I start to fall over (which happens quite often). My trampoline doesn't have a stability bar (like the one on the link above does), but I do highly recommend the bar for anyone who is just starting out with this type of exercise. While jumping or jogging I put on headphones with some good tunes and I also hold dumbbells (varying from 3-12 lbs) for a bit of added strength training. When I first began my workouts on the fitball I fell off a lot, and I still do sometimes. Make sure that you are close enough to a wall or chair that you can catch yourself if you start to tip over. And whatever you do, don't fall over into a bookcase where a large bag of catfood is likely to be dislodged and fall on your head (just saying...). Also, when you first start this type of exercise, just try for 5 min and then work up to longer workouts. It's deceptively hard work to hold yourself in balance on a ball while jogging and holding dumbbells. You will feel it in your back and abs, trust me. :)

Since I've started my tramp/ball workouts I've noticed that I have far greater strength and endurance for walking. These exercises are not only good for my heart, but they seem to target the same muscles that I need for stability in ambulation. I've also lost fat and a few pounds along the way. As a result, I feel better, look better, and I have a lot of fun with my morning workouts.

In addition to cardio exercise, I also do dumbbell weight training exercises and about 20 min of yoga stretching daily. In future posts I will discuss how I've adapted both weight training and yoga to suit my unique body.

Much of my motivation in writing this post is to suggest various ways that those with bodies like mine might also get ideas about how to achieve cardio fitness. But I'm also writing this because of my many years of frustration at trying to exercise like bipeds and feeling painful and discouraged. Yes, most cardio work depends on being able to bounce, jump, and run confidently on two legs and that's great for those people who can do that. But for those of us who can't, it's quite difficult to figure out how to get our bodies moving in ways that will be safe, fun, and effective. My methods aren't based on any specific advice from a physician, trainer, or a physical therapist, even though I've asked plenty of them for ideas over the years. Instead, I've figured this out on my own, as someone who is well aware of my own abilities and limitations. I finally hit a point where I realized that no one else could really tell me how I could best get exercise--I was just going to have to figure it out myself, as I am sure many of you have. Thus, I would really like to hear from those of my readers who have also developed your own adaptive fitness techniques--what do you do and how do you do it?

Caveat: I'm no physical therapist, I am only saying here what's worked for me in the hopes that it might be helpful to others who are looking for adaptive exercise techniques. Do run these ideas past your doctor or therapist before you try them, ok?

Pic above was taken by John while I was jogging on my fitball.