Category Archives: amputee

not logical

I’d say that probably 3 or 4 times per year I get some type of parking citation for parking in a disabled parking stall–even with my properly displayed placard. It happened again this morning, only this time I was parked in the stall adjacent to the disabled parking stall because the stall was already taken by another car. Due to construction, there are only two disabled stalls for the entire Humanities area of UCI which has four mid-rise buildings of offices and dozens of classrooms. I got to campus at 8:55am and both spots were already taken. [I should note that there are 5 disabled stalls on the FAR end of this parking lot that are not close to ANY buildings (they are adjacent to an access road and a park). These stalls are so far away that they aren’t even visible from the pathway leading to the Humanities buildings. In the past when I’ve complained about the number of disabled stalls–suggesting that it may not be legal to have so few spaces, those out-of-the-way spaces have been pointed out to me. I don’t consider them accessible and I would suppose that no one else does either given that they are always empty.]

So I wrote a friendly email to the UCI Parking Office explaining the situation and asking that they stripe more stalls during the construction given that we are all struggling to use two stalls and many of us really _need_ the extra footprint of the larger stall to safely enter/exit our vehicles.

The only response I received was a terse email saying that I would have to go through the regular citation appeal process if I want to ‘contest’ my citation from this morning.

So I ask, is it logical that because I was mistakenly cited this morning that I have to go through the time and trouble to appeal this parking ticket? I mean, of course we all make mistakes and I try to have a good sense of humor about these types of inconveniences, but I’m just not feeling particularly patient today.
/whine

harrowing adventures

First, it must be said: There’s no place like home. I’ve smothered all the peoples here with hugs and kisses. And the kitties, too.

To the harrow:
~Within 48 hours of my arrival in Colorado, my leg infection returned (but, hey, before it got out of control I at least got to hang out at the Hot Springs with my hot sistas, so I feel I can’t complain too too much). I got acquainted with the fine healthcare system at Swedish Medical Center and can say that if one is in need of urgent care in Denver, that is surely the place to head. Yes, I’m doing better now–started yet another round of antibiotics and spent some time with my friend vicodin.

~Coming home I had my most traumatic experience with airport security yet. I politely explained to the guard before I walked thru the metal detector that I didn’t need to remove my shoes because of my disability and I would have to be hand-searched because of my prosthetic leg. However he decided that I was being a “belligerent passenger” and called out the red alert. I ended up removing my shoes while being surrounded by several security personnel and then penned in a plexiglass enclosure.

Moments later, as the head of security was profusely apologizing me for all that had happened–I still in my socks and walking on a slick linoleum floor, slipped and fell in front of a huge crowd of onlookers. I was just mortified–at the horror of being corralled by security, at being held and treated like a criminal simply for trying to explain my needs to one over-reactive employee, and then slipping. And just feeling so vulnerable everytime a TSA employee takes advantage of me (it’s not the first time).

And, why, oh why do I not feel one whit safer in the skies with these numbnuts policing our airlines?

pilgrim classic: I, robot

Originally posted on 3/1/2007:

Sometimes I make jokes about being a “bionic woman” or a “cyborg.” Having a prosthetic leg with a computer-controlled knee joint lends itself to such comparisons. Truth be told, the first thing I’d reach for if there was a house fire in the middle of the night and we needed to exit quickly, wouldn’t be the family photo albums. I’d reach for my robotic leg. It would make sense, given that the leg cost as much as a luxury car. And, of course, because it’s essential for my mobility.

I’ve been robotic for about three years. When I first heard that my insurance would pay for a computerized knee joint, I was thrilled to adopt the technology. I knew that it meant more stability, fewer falls, and a more natural gait. My prosthetist duly warned me not to get it wet, to charge the battery every night for at least three hours, and to notify him at the first sign of any malfunction.

My kids were thrilled with my leg and its robotic possibilities. We wondered what might happen if an evil genius reprogrammed my leg and forced me to rob banks or steal diamonds? We giggled long and hard about that scenario. The first time my battery started running low, I was standing in a grocery checkout line with my son and daughter. We heard the telltale beeps and I felt the vibrating sensation like a cellphone ringer, notifying me that I had 10 minutes to get my leg plugged in or I’d lose power altogether. We raced home and made it just in time. The adventure was more thrilling than a car chase scene in a spy movie.

Some days, however, I feel guilty about owning a leg that cost more than fifty thousand dollars. I think of my limbless sisters and brothers in other circumstances and I realize that dozens—if not hundreds—of low-tech limbs could be purchased for the price of my computerized leg. And I contemplate the thousands of new amputees returning home from Iraq, and those people throughout the world who live in daily fear of loss of life and limb.

Last year my leg malfunctioned while I was traveling in Asia, perhaps a result of using a faulty power adapter for charging my leg. Though there was no way to get the computer repaired during my trip, I was able to continue my travels with my knee stiff–walking as if wearing a cast. Despite the impairment, I carried on with typical tourist activities: scaling the Great Wall, strolling through the markets, touring gardens, and do forth. Nearly every place we visited there were beggars, many of them amputees. I knew I needed to avoid giving handouts or I would be besieged by dozens of people asking for the same. So I kept my hands in my pockets and looked into their eyes and felt heartsick and smug. Contemplating the price that bought my mobility. Feeling my own betrayal.

pilgrimclassic: Casting Faith

This post originally appeared on Nov 19, 2006:

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.

pilgrimclassic: a photo tribute to a well-traveled limb

Originally published on December 13, 2006:

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.

Update: here is a ‘key’ to the photos for those that are difficult to identify
1) both feet
2) my worn-out heel
3) a tear in the covering at my knee
4) the valve that seals my suction socket
5) my big toe w/a shredded nylon over it
6) looking down the back of the leg starting at the heel

pilgrimclassic: I, robot

Originally posted on 3/1/2007:

Sometimes I make jokes about being a “bionic woman” or a “cyborg.” Having a prosthetic leg with a computer-controlled knee joint lends itself to such comparisons. Truth be told, the first thing I’d reach for if there was a house fire in the middle of the night and we needed to exit quickly, wouldn’t be the family photo albums. I’d reach for my robotic leg. It would make sense, given that the leg cost as much as a luxury car. And, of course, because it’s essential for my mobility.

I’ve been robotic for about three years. When I first heard that my insurance would pay for a computerized knee joint, I was thrilled to adopt the technology. I knew that it meant more stability, fewer falls, and a more natural gait. My prosthetist duly warned me not to get it wet, to charge the battery every night for at least three hours, and to notify him at the first sign of any malfunction.

My kids were thrilled with my leg and its robotic possibilities. We wondered what might happen if an evil genius reprogrammed my leg and forced me to rob banks or steal diamonds? We giggled long and hard about that scenario. The first time my battery started running low, I was standing in a grocery checkout line with my son and daughter. We heard the telltale beeps and I felt the vibrating sensation like a cellphone ringer, notifying me that I had 10 minutes to get my leg plugged in or I’d lose power altogether. We raced home and made it just in time. The adventure was more thrilling than a car chase scene in a spy movie.

Some days, however, I feel guilty about owning a leg that cost more than fifty thousand dollars. I think of my limbless sisters and brothers in other circumstances and I realize that dozens—if not hundreds—of low-tech limbs could be purchased for the price of my computerized leg. And I contemplate the thousands of new amputees returning home from Iraq, and those people throughout the world who live in daily fear of loss of life and limb.

Last year my leg malfunctioned while I was traveling in Asia, perhaps a result of using a faulty power adapter for charging my leg. Though there was no way to get the computer repaired during my trip, I was able to continue my travels with my knee stiff–walking as if wearing a cast. Despite the impairment, I carried on with typical tourist activities: scaling the Great Wall, strolling through the markets, touring gardens, and do forth. Nearly every place we visited there were beggars, many of them amputees. I knew I needed to avoid giving handouts or I would be besieged by dozens of people asking for the same. So I kept my hands in my pockets and looked into their eyes and felt heartsick and smug. Contemplating the price that bought my mobility. Feeling my own betrayal.

my feet, they’re all wet…


gettin’ my feet wet, originally uploaded by pilgrimgirl.

I can’t get my right foot wholly wet because I don’t want it’s computer-y parts to malfunction. But I can get the prosthetic footshell and nylons a bit soggy, as I’m doing here. Chasing the waves and enjoying the cold sand between my toes.

When I load photos of my fake foot to flickr (even one as innocuous as this one), I get hundreds of views. There’s a large community of amputee fetishists (called devotees) who are fascinated by such pics. Sometimes I am wary of the attention that such photos garner. Sometimes I just don’t care. Sometimes I am curious about the people who are so interested in me simply because of my missing limb. I suspect that some of my regular readers on this blog may be devotees and I’m okay with that. If you are interested in the whole me (and not just the missing bits) then that seems far less disconcerting than those who simply compile links to images of amputees.

While I don’t completely understand the fascination that devotees have with amputee women, I can recognize that I have my own odd proclivities. Some folks are just more interesting or attractive to me for whatever reason–it’s a personal aesthetic that seems beyond explanation.

But a part of me still feels a bit uncomfortable with the fact that a photo of my feet is of more interest than one of my face.

on my feet again…

For most of the summer I had some sores on my right leg that made it painful to wear my prosthesis. I wore it anyways most days, but only for a few hours at a time. And the sores were awful and raw and oozy. And so painful to walk on–I’d say it was akin to hiking with 2″ ulcerated holes on both the heel and ball of your foot while you’re wearing sweat-drenched scratchy wool socks. And then add into that the discomfort from the toes I broke at the beginning of the summer and it was just a painful few months. Painful, I say.

So just yesterday I marveled at how easy it was to walk around my garden. The 30 ft walk from my gate to the hose had seemed pretty torturous for a few months there. And it was just effortless yesterday. No pain. And everything else has been so much easier, too. Cleaning house, walking to class, my daily routines.

I’d like to think that I don’t take walking for granted. And it’s sure nice to have the realization of how lovely it can be. I’m hoping for many more pain-free months ahead!

🙂

What if….

Photo: taken sometime during the latter half of my chemo treatments. At this time I weighed just over 70 lbs and had lost all my hair (including eyebrows and eyelashes). I’m wearing my wig in this pic. I was using crutches to get around much of the time, still unable to use a prosthetic limb comfortably following my amputation surgery a few months earlier.

Sometimes I wonder what my life would have been like if I’d never had cancer. It’s a big question, one that looms every morning as I get out of bed and put on my prosthetic leg.

I wonder how having had the cancer has held me back in so many ways. I deal daily with pain and sores. I have chronic issues related to the toxicity of the chemo. I limp. I am often tired and somewhat prone to depression. Every time I have an ache somewhere I wonder if it is the cancer again. Currently I am avoiding doctors and I haven’t had a physical exam in three years.

I just want to be me and not a cancer patient.

But I also wonder if I hadn’t had cancer, would I be a totally different person? Would I still be a gardener, a locavore, a mother, a lover of John? A Mormon? A Quaker? A teacher and writer of academic papers?

Would I love cats? Chocolate? Or meditating by candlelight? Would I have rowed the canals of Canterbury or clambered up The Great Wall? Would I be afraid of rodents? Would I relish simple living?

I suspect that I would be a wearer of high heels and a swimmer in oceans. And a cartwheeler in meadows of green grass. That I would be a hiker of the Narrows and walker of the Pilgrim’s Path.

But what if not?

And what if my cancer came back tomorrow? Or my kitties run away? Or I run away? Or what if my latest insurance claims are denied and my leg breaks and I lose my job and the Mormons excommunicate me and I make John miserable and I am unkind to my children and I am just so so so tired that I never get out of bed again?

What if?