Hook me up to your laptop computer and fix my broken cyborg knee so it bends when I walk.
And I’ll take those first few hesitant steps…
Then I’ll realize that all is right in the world again because my technology is doing what it’s supposed to.
And I’ll smile (head to toe).
:)
Today has been a sucky day. The suckiness was compunded by the fact that the “loaner knee” [think ‘loaner car’–it’s a beat up old knee sent out to anyone whose knee is in the shop] that my prosthetist installed on my leg yesterday is confused.
For whatever reason this knee has a few wires crossed. It thinks that when I step down on my toe I’m really stepping down on my heel. So everytime I take a step it hesitates and locks. It doesn’t make me fall, but it’s an odd sensation that makes me feel like me knee is about the bend the wrong direction.
So added to the fact that I was up almost the whole night last night writing papers, and I’m still jetlagged, and my kids are stressed about school, and John has had to compensate for my lack of mobility this week, etc…Everytime I take a step it literally feels like a step backward rather than forward. Also, my leg is sans skin right now and there’s a big sticker running down the front of my metallic blue shin that says SERVICE. As if I don’t know that this is the ‘service’ knee. As if I need to announce this to every passersby. Like it isn’t hard anough having to teach a class to 60 undergrads when I can’t even take a confident step and I’ve got such a bizarre sticker on my leg. As if I really needed that today.
I think I came the closest yet to throwing in the towel. To saying that grad school isn’t worth it. To saying that I want to curl up with my favorite sweater and a trashy novel and STOP TRYING SO HARD.
A part of me wanted to go up to my teachers and tell them how today really sucked and I can’t walk and I’m tired and don’t we all just have days like these and do they mind if I’m not at my best today and can I turn in my assignments late or can I just take today off? But then that other part of me that listens to excuses from my students and rolls my eyes at their ‘illnesses’ or their computer snafus, or whatever, that part of my realized that I couldn’t go to my profs with an excuse. I just can’t tell them about what it’s like to have a broken knee, to hardly be able to walk, to feel frustrated and ashamed by this dorky loaner.
I can’t tell them that it’s just not my fault that today sucks.
BTW, just now I peeled off the SERVICE sticker. It almost made me feel better.
Howdy friends!
China was _fabulous_. It was scary and dirty and beautiful all at the same time. I loved the smalller towns (Hanzhou and Suzhou)the best. Beijing was military and sparse. Shanghai too modern and New York-like.
I came home with a resolve to live in Asia. I’m no longer afraid of funky toilets, weird food, and seas of different-looking faces.
Perhaps my biggest news from the trip was that I broke my leg on the flight over. (My right leg, not my left). As a result, I got to revel in attention from lots of older men who took pity on my incapacity. And everything turned out just fine.
[Note: getting off the plane I headed straight into a dingy LAX bathroom and sang the praises of paper seatcovers, and TP, and soap, and beautiful white poreclain toilets….]
PS: Kudos to John and Amy and Brooke and all of the other helpers while I was gone!
boathouse
Originally uploaded by pilgrimgirl.
On Saturday Caroline and I got up at 6:30 to go canoeing. That was 6:30 a.m. CT time, which meant 3:30 CA time (yawn!). When we got down to the lake we realized that the canoes were not conveniently located by our cabins, but were across the lake from us.
After a few hesitant moments, we headed off at a trot around the lake. What made it all more interesting was that I had forgotten my coat (left it on the floor of my bedroom back home) and it was COLD! I also hadn’t worn my leg (didn’t want to get the computerized knee wet), so I was on crutches. To my surprise the 1/2 mi hike around the lake goes pretty fast when you are freezing and it is 3 a.m. and you haven’t eaten and you are wearing a coat that you kifed from your still-sleeping bunkmate.
The paddling turned out to be delightful. All the more so because we were accompanied by one of the well-known founding mothers of ExII. What fun to get to know her better!
By the time I had crutched to the boathouse and back and paddled for half an hour, my arms were about ready to fall off. After a hasty breakfast I headed back to bed for an hour…
It’s a hot white sheen that shimmers across the top of my right shin. It burns there, deep and slow. And every once in awhile flares hot and close to the bone. I see it in my mind’s eye. It is the vision that hurts.
On a night like last night I lie awake. Hoping the pain will cease so I can sleep. I twist the feather comforter into a tight wad . I wrap my legs around it. I bury my face and hands into it. I bear down.
Sometimes the pain is a comfort. A connection to what is lost. Sometimes it makes me wonder why it still hurts so bad. To lose a limb. After 21 years.
My prosthetist Tom was himself an above-knee amputee. I met him on Christmas Eve when my knee broke. I was at home with my two children—the youngest just one-month old. I was despondent. How could I care for two children with a broken knee and I wouldn’t be able to get it fixed until after the holiday? I began calling all the prosthetists in the Yellow Pages. Tom answered his phone and agreed to make a housecall. He came by and quickly ascertained the problem. He made a quick run back to his office for parts and made the repair. When I asked him how much money I owed him, he said “Merry Christmas” and winked at my children as he headed out the door.
Years later when I wanted a leg that I could wear kayaking and to the beach, Tom made me a pylon with a plunger-like rubber stopper on the bottom instead of a foot. I loved wearing that leg. It had no knee, no technology. It cost only a few dollars.
Garry, my current prosthetist, was assigned to me by my HMO. He works for a growing chain of prosthetic offices. My latest leg cost $64,000—which the HMO paid for. It has a computerized knee joint and it has a battery that needs to be ‘charged’ every 24 hours. It imitates an almost-natural knee motion. I can walk down hills and stairs and on even surfaces without fear of falling. It has a lifelike cosmetic cover. I can bounce on my toe three times to change the ‘mode’ of the knee for sports activity.
But it can’t get wet. And it makes me nervous to go barefoot because the points for the electrical charger are on the side of my ankle. I haven’t gone to the beach in two years.
No one leaves comments on my blog, but I have had some nice emails and comments from friends who seem to enjoy reading it. Perhaps the post that’s generated the most comments is walking (about a friend who was critiquing the way I walk).
It’s interesting that being disabled means that your body is a public object–most everywhere I go I am stared at or asked questions about my leg. I’m pretty used to it. I expect that when I’m walking through a mall there will be numerous people staring (maybe that’s why I don’t care for malls?).
When I was in France I noticed that everyone stared at everyone. It was a socially accepted and expected activity. Here in the US people are more subtle–they try to stare without me knowing that they are staring. This is particularly obvious when my back is turned to people and I quickly turn around and see them averting their eyes. It’s funny, too, when I’m at the gym and people forget that the walls are mirrored and I can see them staring.
When I was younger I used to wish that just for a day I could go in public wearing shorts and not being noticed. Now I think I’m so used to it that I don’t even care any more.
Though the stares don’t bother me, sometimes the comments or well-intentioned adults do. The most common is, perhaps, the question about why I don’t run marathons or participate in a paralympic sport “like so many other amputees” that this person has seen on TV. Well, duh. My cynical response is to ask them how many olympic medals they’ve won recently [And then there was that one day that someone at church insisted that I had dated her brother, simply because I was an amputee and she knew he had dated an amputee. As if I was the only female amputee in the western hemisphere. Sheesh].
Though the adult comments sometimes sting, kids’ questions rarely do. For the past 4 years I’ve encountered hordes of kindergarteners each day as I picked up my kids from school (the kindergarten classrooms are near the school entrace so I always pass them). When I don’t wear my “skin” (when my pylon leg is showing), the kids are so fascinated!! They meake me feel famous as they gather around me with awe and ask to touch my leg. I love it. We have such fun conversations. It’s the well-intentioned adults that try to shush them that leave me feeling disabled.
Reading this post today on dooce.com made me think of my own fears about the ways my kids would interpret my physical difference. In the last paragraph of her post, Heather talks about her daughter noticing the mole in the center of her forehead and how this mole–what Heather had perceived as a flaw–has become secret sign between her and her daughter.
When I first realized I was pregnant I wondered how my children would perceive me–would they see a mother who was “less than whole?” Would the resent the fact that I wouldn’t be able to run and jump and play with them in the same way as other mothers do? Some days, when I wanted to teach them to skip rope, or to ride a bike, I agonized. I felt so awful that I couldn’t do such things.
One day when my son was about 5 years old I asked him why he thought it was that we sometimes parked in handicapped parking spots–did he think think that someone in our family was disabled? He thought for a moment and then replied:
“Well, Mom, I suppose it’s because you wear glasses.”
After I giggled a bit at his response and questioned him further, I realized that he thought that all Moms had legs that could “come off,” that all Moms were amputees. Though it was only a little while later that he figured out that I was unique, neither he nor his sister have ever whined or complained about my limitations. Sometimes they even “mother” me–worrying if I”ve been walking too far or if my stump is irritated. When I get pressure sores, my daughter is often the first to comfort me.
I feel so lucky to have such wonderful kids, and while I would love to be able to do all things “normally,” I suspect that because of some of my limitations, many interactions with my children are all that much more precious. For example, when we went swimming together on Saturday it was pure joy to race with them, to be able to swim fast, jump high, dive deep, etc. When we pulled ourselves out of the pool and I retrieved my crutches from a nearby beach chair, I think that I savored the thrill of swimming so much more because it was an unusual gift of freedom.
Last week a friend told me that I should try to hide my disability better because otherwise I will embarrass my kids. She suggested that I needed to learn to walk better–without any limp. She encouraged me to wear clothes that would hide my prosthesis.
I really didn’t know how to respond. Then I thought for a minute. These comments were from a woman who is overweight. She wears high-heeled shoes despite some serious back problems that are exacerbated by her choice of footwear. I have never seen her exercise.
OTOH, I go to the gym often and lift weights or swim. I eat healthily. I walk several blocks/day. I wear athletic shoes and clothing that makes me comfortable.
I may walk differently, but I can still get where I need to go. And my kids don’t seem embarrassed.