Category: amputee

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.

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.

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.

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.

:)