Category Archives: amputee

The $15,000 question…

A little advice here folks…
So if you had these choices, what would you choose?*
1) Get a short-term fix of your knee that would be warranteed for 90 days. Pricetag: $4000
2) Get a longer-term fix of your knee. Almost everything replaced. Warranteed for one year. Price: $10-12,000
3) Get a new knee with all the fancy new bells & whistles. Including a remote control device (I am so not kidding on that). With a 3-year warranty. Cost: $15,000

Allright, so I think option #2 is the dumb one. Which makes it #1 or #3. A few more details: I hate the thought of using a mostly-broken down knee, as my leg is only as good as my knee. Last time I had a bad fall (my robot knee doing what it wasn’t supposed to), I was off of my feet for nearly 6 months and I had to undergo several months of physical therapy after that. I still can’t kneel well because of the chronic bursitis that resulted from the fall.

So I feel like a functional, trustworthy leg is a pretty high priority. But at such a price!!

And let me add a brief whine to this post: I’ve been wearing a “loaner” knee for two months now, while mine’s been in the shop (yah, they’re way behind in repairs because of the influx of Iraq war amputees). Can I just say how anxious I am to get this resolved and get back on my own two feet again???

*Note to my new readers (hiya folks!). My leg was amputated 20 years ago after a bout with bone cancer. Just FYI. 🙂

photo tribute: a well-traveled limb

Bidding farewell to most of my leg today as I upgrade the socket, cosmesis, stockings, and so forth. A pilgrimgirl first: a photo essay tribute to a well-traveled limb.

As I put this together I asked myself why I wanted to take pictures of my leg, why this was important to me. And I realized how much I wish I had similar photos of my real leg before it was amputated. To help me remember.

without a foot to stand on

Can I just say that I really dislike quotes like this one:
“I complained because I had no shoes until I saw a man who had no feet.”

Ahem, but what is that saying about men (and women) with no feet??? That they exist as morality lessons for all those shoeless joes out there? Or as objects of pity for all those folks whose closets are so full of shoes that they don’t have enough space to keep them in???

Casting Faith

On Thursday during my casting appointment there was a group of four people involved in the process—two prosthetists and two interns—each taking a different role in wrapping my residual limb in a flexible fiberglass shell, then shaping that shell into a form that will both conform to my anatomy and will also best contain the tissue, muscle and bone as I walk. This is an intimate process, as the socket of my prosthetic leg interfaces with the major bones of the pelvic girdle—holding in the ischium and pressing against the ramus.

It is an odd feeling to have two male prosthetists shaping the casting material between my legs and around my hip. Realizing that they are interacting with the most personal spaces of my body. Knowing that it is their job and this is a necessary process for getting a good fitting socket. Me, trying to remain a bit aloof and distanced from the process, yet at the same time having such high hopes that they will get a good fit—that the socket will work well and not cause pain and the suppurating sores that I’ve suffered with for the past few years.

On Thursday evening I experienced a different form of intimacy. I gathered around the kitchen table of a Friend, holding hands with three Quaker women who agreed to serve on my Clearness Committee. We sat in silence, in prayer, until I felt moved to speak, to tell them of the turmoil in my heart in the process of leaving Mormonism. I spoke hesitantly, nervously. Their role was only to ask open-ended questions. Not to judge. Not to guide. After 90 minutes of speaking and silence, they mirrored what I had spoken back to me. They told me what they had heard me say. They discussed how my body language revealed the truths of my heart. Most of all, they shared their concern for the burdens that I am carrying.

Perhaps ironically, the Clearness Committee experience was far more discomfiting and intimate than the casting for my prosthesis. For I don’t readily share the thoughts of my heart. Yes, I do this daily blogging, but I speak primarily of mundanity here. I’ve only very hesitantly shared the steps of my spiritual journey with anyone. I suspect that most just can’t understand. Within the Mormon community I feel censure and distrust. I have few friends who can empathize with the loss of faith. Who can grieve with me through this process?

Outside of Mormonism, I am flummoxed by trying to explain what leaving the church means. That it is a complete change of worldview. Is it, perhaps, like having to relearn to walk?

There is a popular LDS song called “I Walk By Faith” that I sang often during my teen years. I identified with this song as a young Mormon who was developing faith in Christ and as an amputee, because each step involved trusting my prosthesis in hopes that it would support my weight. So now on my spiritual journey away from the LDS Church I am learning what it means to walk by uncertainty, to walk by doubt, to walk into completely unknown territory as my heart leads me onwards. Ironically, this seems the biggest leap of faith thus far.

Birthday

Today was my daughter’s birthday.

I am amazed what this last year has done to her pre-teen body. She’s grown tall and lean, though she’s filling out in places, not nearly as boyishly thin as before. I am amazed at how she is maturing right before my eyes. I want to pick her up and hold her on my lap and bury my face into her hair. To smother her with kisses like I did when she was a baby. To have her wrap her arms around my neck and not want to let go.

But instead she is this confident young woman. With opinions. About clothes and hairstyles and colors and books and snacks and flavors of ice cream & birthday cakes.

Her father took her ice skating with her Girl Scout troop this afternoon. They do this together every year on her birthday (it just so happens to be an annual activity—this GS Veteran’s Day skating party…and it’s a right handy way of celebrating her special day with her friends). After they leave I always get a bit weepy because I can’t join them on the ice (damn disability). And I think about the ways that my ‘limitations’ have affected my relationship with her through the years.

She was born in November while we were living in Salt Lake City. It was a hard thing, having a baby as winter neared. I was paranoid about taking her out, such a wee thing, and feared that I couldn’t keep her warm enough in the bitter winds coming down the canyon towards our humble university apartment. I was also fearful of the snow and ice. So afraid of slipping and dropping her. After a snow and freeze I sometimes had to navigate through the parking lot on my hands and knees because I couldn’t keep myself upright on ice, much less carry my baby. I would nudge her carseat in front of me as I crawled. We made it through that long winter and I was so relieved to know that though I’d fallen a few times on the ice but never when I was carrying her.

Many times I have told my daughter her birth story. The visit to my Kaysville cousin. The contractions that were getting stronger. The stop at the McDonald’s drive-thru for the super-size fries. My driving back to Salt Lake, eating fries and feeling my belly grow tight every few minutes. The rush home to get the suitcase and my reluctance to leave my 2 year-old son (despite the good care of my sister) as John corralled me out the door and to the hospital. Walking the medical center’s bland hallways with John and sneaking to the cafeteria for more French fries. An easy labor. And the thrill of seeing this perfect girl. I had kept the sex of the baby a secret from John (at his request) and what a treat to see her father’s eyes when he discovered a girl-child. Disbelief and then complete joy. Seeing him fall in love all over again.

But I haven’t told my daughter the story behind the birth story. I have saved this one for when she was older, for when she might understand how hard it is to make decisions, to see clearly which way to go. John and I were confronting some big choices in our young marriage. He was at a crossroads in his academic career and we were weighing a move to Japan for his fieldwork. We couldn’t come to a decision about when and where and how to make the move. The options weren’t falling into place as they should have. We had vaguely discussed another baby, but we had dropped the discussion for several months. There was confusion and no clear direction.

Then this one night something clicked like the feel of a combination lock when the numbers are aligned and you can sense the ease with which it will open if you will just reach out and pull. There was an unspoken clarity between John and I that hadn’t been there before. As if all the other options were dissolving and there was only this clear choice ahead. And then this overwhelming knowing that we were bringing another baby to our family and this was the right choice.

It was a gift to know that it was my daughter’s time. That she was coming to clear the confusion and to set our family on a path that would lead to some short-term frustration—some financial pressures, an abandoned graduate program, a return to California—but that was the right design for our family in the long-term. And how the surety of that knowing has made her place on our family so right, such a joy.

So how can I tell this dear girl of how she was meant to be here, with us? How can I tell my daughter how much I love her, how right she has always been to me? How much love was invested in conceiving her and how much I agonize as I see her growing tall, as I wish I could hold her tight in the curve of my belly like I did when she was little? And how can I ease the pain of knowing that I can’t be everything to her—that I can’t run and skate with her, but that I hope she won’t hold that against me? That she’ll understand that I invested her body with all the nourishment and love that I could. That I prayed daily that I would never drop her or hurt her because of my physical weakness. And that my prayers were answered then, and I hope they will still continue to be answered as we move into this new phase of our relationship. The one where she is expressing her will and I am learning to respect and enjoy her choices and not mold her into a creature of my own desires.

we’re all cheering

Yep, we’re pretty jazzed around our house about the political victories yesterday. Wow.

Some good news on a completely different front: for about three years I have struggled with the socket on my leg–my last prosthetist just couldn’t get it ‘right.’ Even though it’s been livable, it’s never been comfortable. So I met with a new prosthetist about a month ago and just got approval from my insurance company for a new socket. I’ll go in for casting next week. Brighter, more comfortable, days lie ahead. Definitely worth cheering for, too!

why does god hate amputees?

Hmmm….as an amputee, I found this site rather provocative. I’ve long thought about the dilemma that once my leg was taken, no amount of prayer would ever bring it back, would ever heal me. I realized that I’d never heard of someone miraculously being healed from amputation. Never.

Unlike with my father’s cancer, where we felt that an exercise of faith could bring healing, there was never a mention of praying back my leg once it was cut off. Of course, many people prayed that my bone cancer (the reason for the amputation of my leg) would not spread. And it didn’t. And many people prayed that I would learn to walk skillfully with a prosthetic limb, and this has more or less happened, too.

I think there is a part of me that has always resented God for not healing me from cancer before my leg had to be amputated. After it was taken, there was little I could do except reconcile the amputation into my Mormon worldview. To understand why God wanted me to be one-legged. Even after years of pondering and praying on this subject, it’s not an easy thing for me to understand or to accept.

[Note added 10/17/06: I realize that the website I mention above is not really making a statement about amputees, but rather is trying show the fallibility and/or nonexistence of God. I take issue with the author of this website and they way that s/he casually uses the amputee body for his/her purposes and the way that this erases the agency of the amputee, casting him/her in a subject(ive) position. S/he could have used any number of other examples (e.g. why does God hate white people, because as much as they pray they can’t turn their skin green?; or why does God hate 23 year-olds because no matter how hard they pray, the can’t be 21 again?; and so forth. Though of course my examples sound ridiculous, they illustrate the way the ‘logical’ point the website makes about amputees is only logical because of the way our society devalues disability).]

pimpin’ my gimp?


Ok, so I’ve long contemplated doing something like this to my prosthetic leg. However, I’m not much of a flames and skulls gal. I haven’t come up with any other icons that seemed worth inscribing on my leg. I once read of a girl amputee who wore brightly-colored iridescent stockings on hers, as a way of thumbing her nose at the blandly tan look.

For awhile I wore my leg without ‘skin’–all of my computerized innards showing. This look wasn’t entirely comfortable for me, though. Not only were there many stares, but it was painful to cross my legs and the metal bits wore out my clothes on odd places (not to mention the fact that pants simply don’t hang right on a pylon leg).

Hmmm…it’s like the difficulty of picking a tattoo–how can one choose an image that represents onself, and be assured that this wouldn’t change over time? Even if I were to pick something pretty universal–a peace sign or such–I’m not sure that I’d want to advertise my beliefs/values this way. [Note: the one exception to this is that I’ve started ‘stickering’ my crutches–putting stickers on them from all the places that they’ve traveled with me. They’re sporting Chinese Airlines and Roanoke Island stickers these days]

So if you were me, would you ‘pimp your gimp’? If so, how?

how far is east from west?

This powerful post about peace and forgiveness from God Girl is a must-read (really, all of her posts are worth a gander, but do take a few minutes to contemplate this one)…

John initially showed me this post because the photo of double-amputee Gill Hicks caught his eye. That she has forgiven the London bombers whose acts resulted in her loss is a miracle.

Today I showed my students a video about the 1992 LA Uprising/Rodney King Riots. The movie, Sa-I-Gu, explores the tensions in central L.A. between African-Americans and the Korean shopkeepers whose businesses were looted and burned to the ground. Though there are interviewees in this documentary that speak kindly about their neighbors, I left class today with an overwhelming weariness. Feeling as if the world is way too complex. With a loss of hope that was exacerbated by a conversation with a student in the Navy following the film.

But I think I will prepare for Rosh Hashanah this year as God Girl has suggested, by finding hope through forgiveness. She quotes Rabbi Ephraim Buchwald as saying:

“We have this concept that God is in the fields….He’s not in his temple, he’s not in his abodes . . . he’s not transcendent. He’s very, very imminent. He comes out to the fields, to the people in the fields, begging them, ‘OK, come to me and just ask for forgiveness.’