I'll never forget a party I went to about ten years ago, just after I stopped answering all those questions from the kids at the park. It was an evening party in late June and the weather was beautiful. I knew the beginning of the party would be warm, sitting on the west-facing deck, but that the air would cool down after the sun set.
But the weather wasn't the reason I chose to wear pants to the party. I was finally sick of my prosthetic leg defining me. I knew that other people looked at my prosthesis and couldn't help but immediately have a bunch of assumptions about me. Anything from "She must have been through hell. What a survivor" to "Oh, gross. Decent face, but I'd never date her." I know what it's like to see a piece of someone and assume that it's a huge part of their identity.
Trouble was, with me, I used that to my advantage. I didn't purposely flaunt my leg, but if it came up in normal conversation, I didn't hide it, either. I wore the shorts instead of the pants. I assumed that people would think more highly of me if they knew I was an amputee. If they didn't know about my leg, I didn't trust that they would like me, that I would be enough. Ironically, I felt more whole in other people's eyes if they knew a part of me was missing.
Once I stopped answering questions about my leg from strangers and realized I didn't have to be the Amputee Role Model of the Universe, I could see that there was probably more to who I was than just being an amputee. Fortunately for me, I had a fallback identity. I was a new mom, a stay-at-home mom, and I was relishing in this role.
Motherhood is an equalizer. I could easily keep up with the other moms at play groups, singing groups or just comparing notes about poop and teeth and first steps. That I was an amputee in those groups was a non-issue. We were all just being moms together. For the first time in my life I had acquaintances that didn't even know I was an amputee. At first this was very uncomfortable for me, so afraid was I that I wouldn't be accepted or liked. But I was. I was learning not only how to be myself with people, but who that self was.
Motherhood was a perfect segue for me to leave my Amputee identity behind. Now I am expanding, perhaps realizing for the first time, how much more there is to me than just an amputee or just a mom. I've even realized the past few months (I love being 50!) that I can be full of contradictions and paradox and even that's okay. Uncomfortable? Absolutely. But it's all good.
Now when I go to a party, I wear what I want and bring my whole self to the party, not just the piece of me that's missing.
Thursday, June 17, 2010
Monday, June 14, 2010
A full head and a grateful heart
Last Thursday I met Tim Shride who recently visited Sierra Leone with the Prosthetics Outreach Foundation. He is a prothetist who was there to provide service to the Sierra Leonians. I was amazed that in a town with hardly any running water or electricity they are able to do this work. He showed me pictures of the clinic and the accommodations they use to ensure that amputees in this country are able to become mobile again. I was amazed.
Then on Friday I visited Ray Pye, the Director of Programs at the Prosthetics Outreach Foundation. As an industrial designer, he explained his role in the production of the Seattle Foot which come onto the market in 1986. The Seattle Foot was revolutionary in its design in that a keel in embedded into the core of the rubber foot made of material that is able to store energy. This stored energy is then used as a spring when one walks off the toe of the prosthetic foot.
His experience working on the Seattle Foot laid a foundation for his work with the POF. Ray painted many visual pictures for me as he explained how the Vietnamese manufacture every piece of the prosthetic legs they make. I learned how rubber is made, how a mold is formed, what "vulcanized" means. He explained all the steps the POF has taken with the Vietnamese to ensure that every part of the legs made in Vietnam are made in Vietnam - down to the small hardware. I left with a full head.
I was barraged with the myriad of luxuries we have in America when I thought about all the basic needs that are so hard to access in developing countries. This lack requires dedication, ingenuity and tenacity by all the folks who produce prosthetic limbs these countries.
Each country is so different in its needs and cultures, but one fact seems to thread its way through each one: amputees are undervalued members of society unless they are mobile and able to contribute to the basic day to day functioning. All it takes is $300.
Then on Friday I visited Ray Pye, the Director of Programs at the Prosthetics Outreach Foundation. As an industrial designer, he explained his role in the production of the Seattle Foot which come onto the market in 1986. The Seattle Foot was revolutionary in its design in that a keel in embedded into the core of the rubber foot made of material that is able to store energy. This stored energy is then used as a spring when one walks off the toe of the prosthetic foot.
His experience working on the Seattle Foot laid a foundation for his work with the POF. Ray painted many visual pictures for me as he explained how the Vietnamese manufacture every piece of the prosthetic legs they make. I learned how rubber is made, how a mold is formed, what "vulcanized" means. He explained all the steps the POF has taken with the Vietnamese to ensure that every part of the legs made in Vietnam are made in Vietnam - down to the small hardware. I left with a full head.
I was barraged with the myriad of luxuries we have in America when I thought about all the basic needs that are so hard to access in developing countries. This lack requires dedication, ingenuity and tenacity by all the folks who produce prosthetic limbs these countries.
Each country is so different in its needs and cultures, but one fact seems to thread its way through each one: amputees are undervalued members of society unless they are mobile and able to contribute to the basic day to day functioning. All it takes is $300.
Thursday, June 10, 2010
A New Leg
In my lifetime it feels like I've had more legs than a Broadway chorus line. Every four or five years I have a new leg made. People are often surprised that prosthetic legs are replaced this often, but our bodies change constantly, plastic and wood wear out and technology advances.
I don't like getting new legs made. The process is always challenging for me. Most prosthetic legs are made in about a month or two, but not mine. Making a leg for me takes about four to six months. I don't know why, but I've always been hard to fit - which requires that I keep going back to the prosthetist, usually weekly, to adjust the socket or the alignment to get it just right. I grow to dread these appointments and get sick of taking my leg on and off. Toward the end of the process I avoid them like the plague, so tired do I get of "wasting my time."
It's surprising how different each leg is. Everything is different, especially the small things from getting in and out of the car to sitting on the toilet to how my clothes fit. No two legs are alike and it takes time for my brain to make all the new pathways a new leg requires.
Each time I get a new leg, letting go of the previous one is hard. Even though it's time to retire the old leg, usually because it doesn't fit well anymore, saying goodbye is reminiscent of losing my real leg. Grief bubbles to the surface in its myriad of ways: sadness, anger, and finally acceptance.
After a particularly adventurous five years in my late twenties, before I tucked a retiring leg that carried me through those adventures into the back of my closet, I got out my markers and my calendar. I reviewed all the fun times I had with that leg and drew pictures all over it: kayak trips, backpacking trips, skiing, and all the other landmarks that punctuated my steps with that leg. The pictures eventually wore off, but the memories remained.
Getting my current leg made took two years because Tom, my prosthetist at Cornerstone Prosthetics, was sure that my hip and lower back pain would be alleviated if I changed to the new style of socket. In his attempt to make it fit correctly, Tom made two or three different sockets to fit my residual limb. He was so accommodating to my needs, always making adjustments, twice a week if he had to. Fitting a socket is an art, and for my residual limb any socket is a masterpiece. He waited for me to give up on the new socket before he made me a yet another(the fourth!)in the style of socket I am used to.
I went in for another adjustment today because my residual limb has changed even more because of my daily mile walks. As I rode the elevator up to his office, I thought of the folks in developing countries and how grateful they likely are to be fitted for a leg. A prosthetic limb makes the difference between going to school or not, having a job or not, being an active, contributing member of one's community or not. Today, when I went to see Tom, I didn't do filled with dread at the process; I went in grateful that he's there, he's present, and so incredibly accommodating.
Sometimes I just need perspective. Then I quit whining.
I don't like getting new legs made. The process is always challenging for me. Most prosthetic legs are made in about a month or two, but not mine. Making a leg for me takes about four to six months. I don't know why, but I've always been hard to fit - which requires that I keep going back to the prosthetist, usually weekly, to adjust the socket or the alignment to get it just right. I grow to dread these appointments and get sick of taking my leg on and off. Toward the end of the process I avoid them like the plague, so tired do I get of "wasting my time."
It's surprising how different each leg is. Everything is different, especially the small things from getting in and out of the car to sitting on the toilet to how my clothes fit. No two legs are alike and it takes time for my brain to make all the new pathways a new leg requires.
Each time I get a new leg, letting go of the previous one is hard. Even though it's time to retire the old leg, usually because it doesn't fit well anymore, saying goodbye is reminiscent of losing my real leg. Grief bubbles to the surface in its myriad of ways: sadness, anger, and finally acceptance.
After a particularly adventurous five years in my late twenties, before I tucked a retiring leg that carried me through those adventures into the back of my closet, I got out my markers and my calendar. I reviewed all the fun times I had with that leg and drew pictures all over it: kayak trips, backpacking trips, skiing, and all the other landmarks that punctuated my steps with that leg. The pictures eventually wore off, but the memories remained.
Getting my current leg made took two years because Tom, my prosthetist at Cornerstone Prosthetics, was sure that my hip and lower back pain would be alleviated if I changed to the new style of socket. In his attempt to make it fit correctly, Tom made two or three different sockets to fit my residual limb. He was so accommodating to my needs, always making adjustments, twice a week if he had to. Fitting a socket is an art, and for my residual limb any socket is a masterpiece. He waited for me to give up on the new socket before he made me a yet another(the fourth!)in the style of socket I am used to.
I went in for another adjustment today because my residual limb has changed even more because of my daily mile walks. As I rode the elevator up to his office, I thought of the folks in developing countries and how grateful they likely are to be fitted for a leg. A prosthetic limb makes the difference between going to school or not, having a job or not, being an active, contributing member of one's community or not. Today, when I went to see Tom, I didn't do filled with dread at the process; I went in grateful that he's there, he's present, and so incredibly accommodating.
Sometimes I just need perspective. Then I quit whining.
Sunday, June 6, 2010
Boundaries
When my firstborn Luke was a toddler I took him to the various wading pools in the Seattle area. I'd put on my bathing suit and peg leg (the leg I use in the water), pack a lunch and look forward to a day at the park with my son.
Inevitably we'd be swarmed by other young children. I was like a flower full of pollen and they were the bees. Questions galore were thrown at me: "What happened to your leg?" "Hey, what is that thing?" "Did it hurt?"
I felt compelled to answer their questions. I already felt like a freak to them. If I took the time to be a nice-kind-mommy lady, then I'd help break down any stereotypes of disabled people. I knew kids may not have developed those stereotypes yet, but if I ignored them or didn't answer their questions, then I was afraid that I, perhaps the first disabled person they had ever encountered, would lodge that stereotype deep into their psyche forever. Yea, I took on a lot of responsibility.
It didn't take me long to recognize that I was putting the needs of the children unknown to me ahead of the needs of my own child. This is how my son found out about how I lost my leg. Not a sweet mom-to-son chat, but by me telling strangers my story.
I also took on this duty with adults. At least children are naive, usually sweet and simply curious. With adults I knew I had a stereotype to break down, but the strangers I encountered were appalling. I didn't understand how it helped them to hear a 30 second sound bite of my story. And when they asked THE question, "Did it come off right away?", I was always too shocked to do anything but whisper "yes". My day shifted after these encounters. It was hard to go on after re-telling, yet again, the worst day of my life.
During the second summer of this, Luke said, "Mommy, will you stop talking to those kids at the park?" I had felt caught in a merry-go-round of responsibility and he gave me the out I needed. I spoke my therapist and asked her how to stop. "Why do you answer their questions?" she asked?
"Because they asked!" I said, feeling like I was stating the obvious.
"They have parents, you know, who are perfectly capable of telling their child what happened to you."
Clearly she wasn't getting it. "But those parents don't know what happened to me."
She gave a little laugh. "All the parents need to tell their child is that you lost your leg and wear a prosthetic leg to get around. End of story."
Huh. Really? Wow.
For the next week I practiced my answers to the children. Armed with an arsenal of responses, I packed another lunch for Luke and I and drove to the park. I was so excited to use my new skill, to set my new boundary. I got out of the car, took Luke from his car seat and grabbed our picnic basket. Come on, World, give it to me, I can take it, I thought.
Do you know what happened? Nothing. Barely a stare. Nary a question. Seriously. I have to admit, I was disappointed. And then it dawned on me. I got what I wanted. A peaceful day at the park with Luke.
It's still rare that total strangers ask me what happened, children or adults. I'm fine if acquaintances or friends ask me about it, that feels appropriate. But a stranger at the grocery store line? No. Once I became clear about where my boundaries were, that's what I sent out to the world and it's what I received back.
It's a good thing for me to realize in all parts of my life - Know my boundaries and kindly let other people know what they are. People won't hate me if I honor myself.
Inevitably we'd be swarmed by other young children. I was like a flower full of pollen and they were the bees. Questions galore were thrown at me: "What happened to your leg?" "Hey, what is that thing?" "Did it hurt?"
I felt compelled to answer their questions. I already felt like a freak to them. If I took the time to be a nice-kind-mommy lady, then I'd help break down any stereotypes of disabled people. I knew kids may not have developed those stereotypes yet, but if I ignored them or didn't answer their questions, then I was afraid that I, perhaps the first disabled person they had ever encountered, would lodge that stereotype deep into their psyche forever. Yea, I took on a lot of responsibility.
It didn't take me long to recognize that I was putting the needs of the children unknown to me ahead of the needs of my own child. This is how my son found out about how I lost my leg. Not a sweet mom-to-son chat, but by me telling strangers my story.
I also took on this duty with adults. At least children are naive, usually sweet and simply curious. With adults I knew I had a stereotype to break down, but the strangers I encountered were appalling. I didn't understand how it helped them to hear a 30 second sound bite of my story. And when they asked THE question, "Did it come off right away?", I was always too shocked to do anything but whisper "yes". My day shifted after these encounters. It was hard to go on after re-telling, yet again, the worst day of my life.
During the second summer of this, Luke said, "Mommy, will you stop talking to those kids at the park?" I had felt caught in a merry-go-round of responsibility and he gave me the out I needed. I spoke my therapist and asked her how to stop. "Why do you answer their questions?" she asked?
"Because they asked!" I said, feeling like I was stating the obvious.
"They have parents, you know, who are perfectly capable of telling their child what happened to you."
Clearly she wasn't getting it. "But those parents don't know what happened to me."
She gave a little laugh. "All the parents need to tell their child is that you lost your leg and wear a prosthetic leg to get around. End of story."
Huh. Really? Wow.
For the next week I practiced my answers to the children. Armed with an arsenal of responses, I packed another lunch for Luke and I and drove to the park. I was so excited to use my new skill, to set my new boundary. I got out of the car, took Luke from his car seat and grabbed our picnic basket. Come on, World, give it to me, I can take it, I thought.
Do you know what happened? Nothing. Barely a stare. Nary a question. Seriously. I have to admit, I was disappointed. And then it dawned on me. I got what I wanted. A peaceful day at the park with Luke.
It's still rare that total strangers ask me what happened, children or adults. I'm fine if acquaintances or friends ask me about it, that feels appropriate. But a stranger at the grocery store line? No. Once I became clear about where my boundaries were, that's what I sent out to the world and it's what I received back.
It's a good thing for me to realize in all parts of my life - Know my boundaries and kindly let other people know what they are. People won't hate me if I honor myself.
Wednesday, June 2, 2010
I'm on TV!
A few days ago KOMO 4 News did a story on my walking campaign. They aired the story on three or four different news programs. Lots of people have talked to me about seeing me on TV. Truth be told, being on TV is terrifying to me because my voice sounds three levels too low and, worst of all, I see myself limp. I'm embarrassed when I think of everyone seeing me limp until I realize that people see me limp all the time. It's me that doesn't see my limp. It's always a shock to see it. When I walk, I don't feel my limp; walking this way has become normal. More than once I've seen myself on film and wondered, "Who is that gal with the limp?" It's quite sobering to realize that it's me.
I don't mind showing people my C-Leg and, in the context of a news story, I don't mind talking about my leg or my amputation. Just like when the article came out in the Bellingham Herald, I'm clear that I am doing this for other amputees around the world.
So take a look, if you haven't already seen it, and hear more about my story and why I'm walking 100 miles.
Oh, and look for the ducks.
I don't mind showing people my C-Leg and, in the context of a news story, I don't mind talking about my leg or my amputation. Just like when the article came out in the Bellingham Herald, I'm clear that I am doing this for other amputees around the world.
So take a look, if you haven't already seen it, and hear more about my story and why I'm walking 100 miles.
Oh, and look for the ducks.
Sunday, May 30, 2010
Honoring our Veterans
Memorial day is a day to recognize and honor those who have died while serving in the military. I want to expand that recognition and honor those who have lost a limb while serving our country.
My first prosthetist informed me that many Vietnam vets lost their legs during their time in the service. Because of them, prosthetic technology had come a long way. When I was getting a leg in the mid eighties, the Seattle Foot, the newest prosthetic foot, made its debut, boasting its ability to help amputees run. By having a newly designed spring action foot made from carbon fiber, the technology offered amputees an alternative to the previous clunky foot.
I've written previously about how far that technology has come; I now have the newest technology with the "C-Leg" that I wear and plug in every night. The microchip in this leg reads what my foot and ankle are doing - about 50 times a second - and adjusts the knee accordingly. It's really kind of amazing.
From what I can tell on Google, nearly 1,000 people have lost a limb in the Irag war. Many of them have defied limitations and have gone on to continue in the service. I know a lot of advances have been made because so many people have made the sacrifice and paid a price to serve our country.
I give thanks to the many amputee vets, past and present, who have given not only to their country but have helped the advances in prosthetic technology.
My first prosthetist informed me that many Vietnam vets lost their legs during their time in the service. Because of them, prosthetic technology had come a long way. When I was getting a leg in the mid eighties, the Seattle Foot, the newest prosthetic foot, made its debut, boasting its ability to help amputees run. By having a newly designed spring action foot made from carbon fiber, the technology offered amputees an alternative to the previous clunky foot.
I've written previously about how far that technology has come; I now have the newest technology with the "C-Leg" that I wear and plug in every night. The microchip in this leg reads what my foot and ankle are doing - about 50 times a second - and adjusts the knee accordingly. It's really kind of amazing.
From what I can tell on Google, nearly 1,000 people have lost a limb in the Irag war. Many of them have defied limitations and have gone on to continue in the service. I know a lot of advances have been made because so many people have made the sacrifice and paid a price to serve our country.
I give thanks to the many amputee vets, past and present, who have given not only to their country but have helped the advances in prosthetic technology.
Wednesday, May 26, 2010
Trusting it's Good for Me
A number of people have asked me lately if I can feel a physical difference now that I've been walking everyday for a number of months.
After my first month of walking, at the beginning of the year, the muscles in my body felt looser and I had a spring to my step. Taking two stairs at a time was much easier. But after a few months, I plateaued. I've grown accustomed to my new normal and now I don't feel any physical benefits from my daily walk.
If I were able to walk a longer distance each day I would likely find the benefits increase, but a mile is about as far as I can comfortably walk on a daily basis. On those days when I walk further than a mile, I usually pay for it the next day with a blister on my residual limb.
Just because I don't feel any positive side effects from my daily walk doesn't mean I will give it up. I walk becuase I am committed to my cause: the Prosthetics Outreach Foundation. I walk because I said I would. And, most important, I walk because I trust that my body needs it.
Since I lost my leg, I've never been one to "honor" my body, in fact I've had a love/hate relationship with my body. I love that it kept me alive and I've often hated what it looks like and feels like. The natural aging process has given me pause, though, and as I feel aches and pains that weren't there three years ago and see wrinkles emerge, I realize how finite this body is. I escaped death once, but there will come a day when it's my turn and this body will cease to breathe.
So I remember that walking is good for my heart, my lungs, and my muscles. I'm counting on my daily walk to be a source of stability and strength. But mostly, I just trust that it's good for me.
After my first month of walking, at the beginning of the year, the muscles in my body felt looser and I had a spring to my step. Taking two stairs at a time was much easier. But after a few months, I plateaued. I've grown accustomed to my new normal and now I don't feel any physical benefits from my daily walk.
If I were able to walk a longer distance each day I would likely find the benefits increase, but a mile is about as far as I can comfortably walk on a daily basis. On those days when I walk further than a mile, I usually pay for it the next day with a blister on my residual limb.
Just because I don't feel any positive side effects from my daily walk doesn't mean I will give it up. I walk becuase I am committed to my cause: the Prosthetics Outreach Foundation. I walk because I said I would. And, most important, I walk because I trust that my body needs it.
Since I lost my leg, I've never been one to "honor" my body, in fact I've had a love/hate relationship with my body. I love that it kept me alive and I've often hated what it looks like and feels like. The natural aging process has given me pause, though, and as I feel aches and pains that weren't there three years ago and see wrinkles emerge, I realize how finite this body is. I escaped death once, but there will come a day when it's my turn and this body will cease to breathe.
So I remember that walking is good for my heart, my lungs, and my muscles. I'm counting on my daily walk to be a source of stability and strength. But mostly, I just trust that it's good for me.
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