Category Archives: amputee

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.

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!

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

Denver, 1986

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).