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Sara...

  • ...is a happy, ordinary, middle-aged, suburban woman who paints odd pictures, gardens in a straw hat, lives with the love of her life, is owned by one cat and the ghosts of several others, and walks a little funny 'cause she has a fake leg. She started this website because there's more to life than what we lose, and we need to let each other know what's possible, even if it's only a happy, ordinary life.

November 2011

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    sara at saraarts dot com

    Make sure the subject line of your correspondence is clear and specific. I do not open e-mails from strangers unless I can tell in advance that I want to read them.

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Melissa

You have articulated this so well. I think it's a universal statement that all of us need to hear over and over again.

Diva

Midwestern friend is highly amused!
yeah, let ME tell you stories about walking with Sara! ha!

Sara

Thanks, ladies.

Melissa (who is also Midwestern), yes, I know you know what I'm talking about.

Diva, dear, I'm glad you're highly amused. :) And I can only imagine what stories you would tell, given half a chance.

I just want to add that, when I say people should think before they ask about my amputation, I don't mean people who know me and I don't mean here. I mean strangers encountering me out in the world. I set this blog up just about a year ago with the intention of creating a resource for amputees, a place where there would be detailed, honest discussion of the experience and a compilation of solutions to various challenges, even stupid little challenges like socket farts. Questions addressed within this context about my and other people's experiences as amputees are always welcome.

Jodie

It's funny because I don't even notice people looking at me any more. My friends and boyfriend do though. I've been lucky because most people don't ask questions, and when they do, they are very polite. I can't say that I've ever had someone try to bless me on the street or insist on helping me after I've refused. I do threaten me friends by telling them I will take my leg off and beat them with it. That will always get an interesting reaction.

Stephanie A.

I am so glad that you put this into words. I was born with club feet and have blonde hair and a large chest, so basically I get you on all counts here.

While I can walk now, when I am tired (or lazy) I limp badly. People are always invading my space asking about it and then feel betrayed when I tell them the real reason. It is as though they should have known all along, because, you know, I should have bared all to them.

I am a first time reader, but wanted to share that your words made a difference to me.

Thanks and work that strength!

Lisa B

I bet you really do throw people off kilter -- when they can't decide whether to look at your boobs or your legs! That was funny. This is a great post. Your message and writing is very strong and true. I'm glad Sugared Harpy linked this to her site.

Sara

Thanks, ladies.

Jodie, I don't actually care if people stare at me (though sometimes it's fun to mess with them when they do; I'll explain further down.) Truth is, like you I mostly only notice when they also do something to interfere with me, like talk to me in a condescending manner or impede my progress. And that's just unacceptable.

Stephanie, glad to be of service. Meanwhile, limp shmimp! Isn't it great to be able to walk at all, tired or not? :) Too bad it makes other people think they have a license to get in your face.

To salve your frustration over having to explain it constantly, I recommend checking out Bonnie's shop, http://www.cafepress.com/amputeehee. She has a shirt there that reads "Leg Story: $10." She'll happily customize. Maybe you can have her make you one that says "Why I Limp: $10." Or maybe "How's my walking? Call 1-800-BUZZ-OFF." heh heh

Just a thought.

Lisa, yes, I do throw people off kilter, in all sorts of ways, but mostly by the things I say. The problem with where to look is, of course, worst in the summer when I tend to wear things that make all my most visually compelling attributes quite obvious. Admittedly, though, some of this problem has thankfully reduced as I've gotten more -ahem- matronly looking with age. People get super confused, though, when I wear things like miniskirts and diminutive tops -- nothing inappropriate for my age or weight, just your basic hot weather clothes. I see them, especially teenaged girls, look at me and each other with this expression which telegraphs, "Uh...does she somehow not know what she looks like?" It's hilarious. I always smile at them quite brightly and sometimes even say "hi" as I pass. Freaks 'em out, totally.

Andrew Turley

This post is great. I broke my arm a lot when I was young, and the two things that most annoyed me were, "What happened to your arm?" and "Let me help you with that."

I have a scar from the last time I broke my arm. For a while it was pretty obvious. Once, someone told me that maybe I should wear long-sleeved shirts. If I had been a little faster on my feet, I would have told her that maybe she should wear a bag over her head. Probably best that I didn't.

Anyway, keep on rocking.

Sara

Oh, poor Andrew! But good for you for knowing the problem was that stupid woman, not your arm.

Only people who take no risks have no scars -- or people who somehow, with all the people who need food in the world, still find they have enough money for plastic surgery. I've always been proud of my scars and wrinkles. They are badges of survivorship, proof that I've really lived.

You earned that scar on your arm. You earned it by not sitting on your butt doing nothing for fear you might break something. Good for you.

Oh, and once someone said something like that to me about my first cancer-related surgical scar, which was a big dramatic hole covering about a third of the calf I'm now missing. "Have you thought of covering that up?" she said.

"Have you thought of not looking at it?" I replied.

She was insulted. Her problem, not mine.

Iain Dughlais

Hello,
This is a brilliant post; witty, well argued, some nice references to illustrate your points, and a very fine flair. As I read it I began to feel blessed, not in a religious sense--I gave that up for lent--but in a thank god (or gods???) that I don't get the same treatment for my disability. Albeit, having MS can't always be seen by other people but it very debilitating on some days. But even when I'm walking with a cane, or not walking at all, I never get the disrespect that you experiance day to day (especially with those two mutants at work). Maybe its becuase I'm male. Ya, you know what, probably. If I needed help I wonder if anybody'd come at all. lol Well there you go. Thank you for writing that.

Sara

Thanks, Iain. Glad to give you a chuckle. Now about your own problem...

If they don't find a cure for MS or a good treatment that will prevent your becoming wheelchair bound, the form of objectification you are likely to experience, if you have not already done so, is the kind I have referred to above as the Subject of Great Sensitivity variety. In other words, people will become so afraid of being caught staring, which is rude, that they will make a conscious effort not to notice you at all, which can be just as bad, if not worse. They will make you invisible because of their own insecurities. It's like being denied out of existence because other people are afraid of failing at the niceties. The good news is it won't be because you're a man.

"Well, what am I supposed to do then?" asks the person raised without training in manners. This is a tricky question to answer only because of all our various cultural differences. In California, my state of origin, for example, it is commonplace for perfect strangers to begin speaking to other perfect strangers out of the blue, sometimes getting quite intimate as to subject matter, sometimes even revealing personal tidbits the listener might not want to hear. (I have been guilty of this from time to time myself, and one day nearly 20 years ago even first encountered one of my best friends for life while detailing some very personal misadventures one morning at a bus stop for lack of anything better to do. But I digress.) In some parts of Asia, on the other hand, I am told that it is considered rude to look into the faces of strangers, esp. your elders. And in Massachusetts, where I live now, one perfect stranger smiling and saying "hi" to another perfect stranger in passing is often considered just cause for suspicion.

Now, I don't know anything more about life in Asia than I know about life in a Chicago housing project. I live here, in a Massachusetts suburb, and here I think it's rude not to smile and greet strangers in passing -- especially if I smile and greet every stranger except the one in the wheelchair. So my answer to the befuddled masses who don't know how to act around us "different" folk is simple: Act normally. Treat us as you would treat other people. If you would normally be rude, well, maybe you should rethink that policy, but if you would normally be rude even after that, then be rude to us. If you would normally be effusive and phony to perfect strangers, again, rethinking such a modus operandi might pay off for you, but if you decide you want to stay that way, then don't change for us. If, on the other hand, you would normally look a stranger right in the eye, smile and nod or say "hi" and then continue on your merry way, well I am here to tell you that that's exactly how you should treat us.

Don't let Iain go unnoticed, world at large, whether he's walking, rolling, or falling down. Go ahead and see him -- just see him first, not his MS. It's okay. If he's falling or dropping stuff, you can offer to help him, just like you would offer to help anyone. Don't insist if he says "no." Don't ask him stupid questions like, "What's wrong with you?" But also, don't pretend you don't see him, and don't train yourself not to see him. Just be your normal self, whoever that is, and with whomever you interact.

What do you think, Iain -- or anybody else? Got any corrections or anything to add?

In any case, best wishes. Your road is likely to be tougher than mine, because I can just strap that replacement leg on and keep going, whereas you've got something more complicated and unpredictable to grapple. I wish you strength and, of course, good medicine, the kind that will allow you, too, to just get on with your life.

Iain Dughlais

Thanks Sara,
Never short of words huh? :)

People here in Canada, at least the part of it I live in (it's too big a place to generalize), are very warm and friendly. Thos small town communities where everyone knows everything about anyone and nothing can stay secret. As nice as all that is, there are still those who won't open doors even if they are standing in it--it'salready open and all they have to do is let you pass. But that's all part of living in the world isn't it? We could tell people how to behave but how many really listen or stop to consider? The few that do love us surely. And now, today, because I can, I am going for a WALK. :)

Ciao

Amorette

My own condition is constantly varying in its degrees of obviousness. Sometimes I'm in a wheelchair, sometimes not; sometimes I have a big, ugly brace on, sometimes not. During one particularly awful preteen winter, I had a halo brace bolted to my skull.

It's probably the closest I've ever come to the situations you've described. People stared. People were overly solicitous, and you just KNEW they were standing outside themselves, watching themselves try to assist me and beaming with pride over their own goodness. I got very cynical very fast.

When you've got something strapped onto your torso and bolted at four points into your skull, you end up moving like Frankenstein and bearing more than a passing resemblance. A few times, I tried to venture out into public places. I was a normal person like any other, right?

Little kids took one look at me and started screaming. Parents hustled them away before I could do anything...smile, wave...to prove that I was indeed human. That's what hurt...if I had the chance to turn that fear around and try to teach them, as you teach children about your leg, that would have made all the difference in the world. The kid would have grown up with the knowledge that some people hurt their necks so badly that the doctors have to make extra-sure everything is held still until it heals. And it would have been no big deal, other than maybe a cursory glance to take in the information.

Instead, the parent (fearful as well...what if whatever that girl has is contagious?) acts embarrassed by the child's fear and spirits them away before any learning can take place. I was friggin' twelve years old...what harm, seriously, could I have done?

After several incidents, I was removed from the sixth grade and spent the remainder of the year as a homebound student. No one learned a damn thing, unless you count my learning that people who looked like me deserved to be hidden away.

I was sorry to go. I'd won the school spelling bee and had gone all the way to the big regional, against high-schoolers, at Queen-of-all-Saints. I had also been on Kindergarten Patrol, getting the kindergarten kids ready for their buses. When I left and was tutored at home by the student teacher, my existence at the school was more or less erased. To this day, I'm resentful that the school yearbook used the runner-up's picture and labeled it "Spelling Bee Winner".

Tray

You talk as if God bless you is a bad thing. God bless you isn't meant to bring you down but to encourage. I am a bilateral amputee and it isn't God's fault because I am. If anything God has saved my life. If anything my life is better that I am a bilateral amputee. I can walk on broken glass barefoot. I can walk in high snow and not freeze my feet. why do you put the Creator of everything down, when he gives you a blessing. Part of you is in the after life. That
makes you closer to the spiritual world. Maybe everyone should put a little more thought into God, then just blowing him off.

Sara

Tray, I don't believe in god(s) of any kind, or any kind of afterlife, but I am happy for everyone who does because it obviously comforts you. None of this was the point of this post, however. This is the point:

What I would like for people to consider, especially strangers, most especially strangers in passing, is that my amputation is not about them in any way. Therefore it does not fall to them to remark it, talk about it, bless me aloud for having endured it, or indeed mention it in any way. They can just smile and say "hi" -- and keep walking. Really. In fact, I'd prefer that. Because that's how polite humans treat other polite humans.

I would like people to consider the possibility that the most important thing about me is my humanity.

I would also like people to learn the difference between "blessing" someone (or praying for them) and actually helping someone, the difference between impulsively throwing out a few sentimental words that make them feel good in the instant they say them vs. actually loving someone as a fellow human, you know, personally, from inside your own heart, which means seeing the person first, not the physical condition, and which also means interacting with the person in front of you not asking god(s) to handle that for you.

Here's a reading assignment for you. Go read my Christian friend Elizabeth McClung's excellent blog post about praying for people:

Thoughts about "praying for me" and "hoping for a miracle"

I think you may find it instructive. Regardless, please don't come back here to preach. It's irrelevant here, and it shows you haven't really been listening.

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