Saturday, May 3, 2014

Cane for Pain vs. Stick for Style: The Reality of Disability


For the last two weeks, my back has been in a bad relapse. What does this mean? I am in more pain -- a LOT more pain and I cannot get my mind off the child abuse that caused it.

PAIN!

Able-bodied people think they know what chronic pain is but they don't. 

The epicentre of my pain is in my lower back but it radiates, hot and swollen, up the sides of my spine, across my ribs, under my shoulder blades, over my shoulders, into my neck and around my skull to my eyes.

PAIN!

It radiates through my buttocks like a stab deep on each side. It radiates down each thigh, and calf, and under each foot as sciatica, cold and shrill and buzzing, like electricity. Have you ever heard fingernails on a chalk board? That's what sciatica feels like.



What does this mean pragmatically? It means that every single physical act is an act of courage because every single physical act causes pain. It means it takes courage to even roll over in bed, let alone get out of it. It means it takes courage to feed myself, to go to the bathroom, to brush my teeth, to get dressed. 

It certainly takes God-like courage to leave the house, yet I had to go to physiotherapy. Physiotherapy takes courage because it too hurts. As much pain as I'm in in these photos on my way to physio, I was in far more pain later, after physio.

Pain at this level means asking Beau to help me wash my hair and get in and out of the tub. It means that carrying a glass of water or a mug of coffee hurts like hell. It means I have to make choices all day and night: "Do I really have to pee that badly or can I wait and not have to get up for a while? Am I really thirsty or can avoid carrying water? Do I really need to lie on ice packs now for the pain? But they're so heavy!"

Beau helps with a lot but he's not Superman. He has a job, a PhD to finish, and two children to raise. He has housework to do because, even at my best, I can do very little. At my worst, I can't even wipe down the counter tops. He already does far more for me than anyone should.

This too is what pain means: constant guilt as loved ones do for me what I wish I could do for them.

But I'm not the one who should feel guilty. I didn't do this to myself. My abusers did. In a way, Beau is now their victim too.


Shoes: Ecco; Cane: Life; Jeans and top: Reitman's; Clutch: thrift; Earrings, small ring, and watch: vintage; Large ring: Effy; Bangles: gift from Beau
So, yeah, this worsened pain is really getting me down, I mean really very down. My body hurts a lot and, therefore, so too does my heart.

As you can well imagine, then, comfort was my primary goal in getting dressed for my Big Trip out. Still I did want to look a little bit good, if I could.

 

The blouse, with its pouffed sleeves, transparency, and little tie, reminded me a bit of the 1930s, which is probably why I chose to tuck it in, something I don't usually do; high waists were the thing in the late 30s. I also usually refuse to wear anything with hearts on it as they seem too childish, but I thought the hearts on this shirt were understated enough to go mostly unnoticed.

I looked alright. I didn't look terrible. But they are stretch jeans and I have poor posture from the pain and I've gained weight from the disability and my face is all wan and tired ...

Jayne Mansfield
I mean, I sure as hell didn't look like some of the weird stereotypes of younger women with canes. 



Where the hell do those stereotypes come from? Heels? Hardly! Wasp waist? Not since I stopped being able to jog. A precarious perch on a stool with no back support? Are they trying to kill me?!



 As I had to give up my passion for high heels, I found a passion for jewelry taking its place. Jewelry doesn't hurt my back. It's not too heavy. It doesn't push on my lower back. It doesn't tilt my feet at a painful angle.



It's pretty and it gives me some poise (if only in my imagination) especially if it's real, as the rings, watch, and earrings all are here.

My summer freckles are making their annual come-back too. But for the freckles, I'll remain milk-white but I won't be quite translucent anymore and I won't tend toward a slightly bluish, bruised look under my eyes as I do in the winter. That's nice.



So, yeah, I can put on a happy face and strike a pose or two.



But make no mistake: I'm faking it.



Often, when I tell people that I have a back injury that causes a chronic pain disability, they reply with, "But you look so good." What do they mean by that? Do they mean I don't look like their stereotypes of the disabled? Do they mean I look "normal"? Do they mean I don't look like I'm in pain? I find this hard to believe.

Any astute observer, anyone who knows me or knows pain, can see that I'm suffering. Can't they?

Beau calls this face my "pain face" and he always expresses great delight when my pain face goes away and my smiles become genuine again.

This pose here is one of my classic pain poses, in which I try my darndest to push my hips forward to alleviate the pain in my over-arched lower back. 


I was born with Lordosis, which, simply put, is an exaggerated arch in my lower back. Many people, including practically everyone in my paternal family, go through their entire lives with Lordosis and experience no back problems at all.


But my case was different. I was severely sexually abused throughout my childhood. By about nine, I was being regularly sold to men who would rape me, often more than one at at time, sometimes extremely violently. 


On perhaps the worst of these occasions, when I was nine or ten, I was sold to three men who took me to a dank basement and raped me in every possible way for three days straight. They raped me on the cement floor, they raped me strung up on a kind of modified cross on the wall, they laughed and were delighted with their behaviour. The more dehumanizing their acts, the happier with themselves they were. 

Artist: Eric Ravelo
It hurt like hell. It hurt like crucifixion.

There I was, an unusually small nine year old with Lordosis. My back didn't stand a chance.

Whenever my back hurts now, I am reminded of how this pain was caused. 

My back always hurts.

When the pain is worse than normal, so are the memories. When I'm using my cane, I feel even further reduced and humiliated by those who saw fit to destroy my body for their own pleasures 34 years ago.



So you'll forgive me if I'm a little peeved by the stereotypes and poses of younger women with canes. 

The "sexy" back arch, the one that, when natural, is due to a spinal abnormality, the one that hurts me so very much? It's ubiquitous.



Everywhere.

 

Apparently, it's hot.


So hot that there was a time when fashionable women forced themselves into this position with the s-curve corset. Yes, it did cause spine, bone, and organ problems.



It hurts terribly just looking at it! 



What blows me away when I'm using my cane, is how many people, usually men, say with mischievous glee, "It's a great weapon. You could hit someone with that." They say this even when they know how I was injured!

I can barely hold up the weight of my own body, let alone lift my cane and give someone a powerful smack with it. And this is when I'm suddenly the living embodiment of some secret, SM vision in these men's heads?

Just when I'm weakest, men like this insist on seeing power, not pain, sexual autonomy, not the results of sexual subjugation.


 

They see something like Madonna at the Grammies, all sexy dominatrix and stuff.



When, in reality, I feel much more like this ...


Marlene Dietrich
... than this ...
I feel more like this ...



... than this.

Christ, I couldn't get into one of these poses and certainly couldn't get out of them! 


 This is my unsexy reality: huffing and puffing with pain as I push myself up with one arm on the back of the bench and support myself on my cane with the other.


Madonna
I can barely feed myself, let alone be someone's dominatrix fantasy.


And canes are damned unwieldy things too. Have you ever tried to accomplish anything, let alone everything, with just one hand? That's what you have to do with a cane. And if you think you'll just set it down for a moment, think again. Even if you do have something lean on other than the cane, the cane will fall to the floor, no matter how careful you are to lean it against some vertical surface. And then you'll have to bend down to pick it up. And that will hurt -- a lot.



Do I sound cranky? I am! I've been in constant pain for about seven years now. I've been in intermittent pain since I was nine. I've got about forty more years of pain to go.

Because of pedophiles.



Yes, I am indeed cranky and I'm not overly inclined to give this entry my usual, peppy, "light in the darkness" conclusion.

The only "light" I'll give you is this: The night after these photos were taken, despite my pain, Beau made me laugh so hard, I spit water across the table and even got it up my nose. I'm mad as hell about what happened to me, and sad as hell about what I've lost because of it, but my partner can still make me laugh. 

Take from that what you will.



That's all for now, folks.

(I'm linking this up at Visible Mondays on Not Dead Yet and to Shoe Shine over at Ephemera.)
qwerty

29 comments:

  1. So sorry for all the pain you experience on a daily basis. Strangely enough, right now I am listening to "Without love, where would you be now?" by the Doobie Brothers. Your partner's love is wonderful to read about. Thanks for sharing with Visible Monday.

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  2. Hi Charlotte. I haven't checked in with you for a long time but I often wonder how you are doing so I was very happy to see you at Patti's Visible Monday (I didn't make it this week) I, too, suffer from chronic pain but for very different reasons than yours. Your situation is very infuriating. I really don't have words. But I so admire your strength and - yeah - your beauty. I hope you're not sick of hearing that from people. I am by nature a very chatty jolly person so it is easy for people to think that I am just fine...when I am not. So frustrating....not being taken seriously. Augh! So on to fashion talk. I do love your blouse. So very sweet. It looks lovely with your pale skin. Take my word for it. Sunscreen!!! I am currently seeing a Feldenkreis practitioner. It seems to help a teeny tiny bit with the incessant pain. But I suppose you've tried that. Just thought I would mention it. Sending you a nice gently hug.

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    1. I don't get sick of people liking "my beauty"! I don't hear that a lot. A lot of people do tell me that I'm strong or brave and, honestly, I don't understand what they mean; I don't know how being weak would look different from what I am and what I do. Thanks for saying it though.

      My skin reacts really badly to sunscreen. Mostly, I just stay out of the sun. I have all my life because the sun makes me feel ill. It's a red-head thing, though my hair is more auburn than fire red.

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  3. Oh Yeah. Edward Hopper IS Great!!!!!

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  4. Charlotte, have you thought about a rolling walker with a built-in seat? I think it may give you more stability yet preserve some fluidity of motion. I know it helps me - just a thought.:-)

    Alicia
    spashionista.com

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    1. I have indeed, Spash, and I may get one. I should soon get my scooter (but who knows with the paperwork of being disabled in Canada) and I think that may be my solution, but the walker could be for "in-between" stuff. I found one once at Value Village and used it while I was there and it was wonderful for pain relief.

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    2. I think I have your cane Charlotte & I also use a scooter when I'm going somewhere there might be a lot of walking. My cane is forever hitting the ground too, and the other thing I've found is that I need to wear gloves since my cane hand or my scooter driving hand gets very chilly at times. Dress warmly when you get your scooter - it can be a cold ride (esp. if you're like me, and like to go fast!). On the plus side, it's given me the chance to make and wear many, many types of fingerless gloves that I crochet. I think you always seem to find at least one positive (and this speaks to your resiliency), so I guess my "positive" is that I get to match the gloves to my outfits! Keep smiling! Break through pain & flare ups are horrible, but you seem to handle it well.

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  5. I imagine now better the way you feel. Once I was crippled of back so much, I dont know the reason why. But I couldn't undress, move, anything. All my body was awfully hurting. Though I got the courage to undress because I had to, like you. I didn't think of that pain before, I thought it was less for you... you're really courageous. The pose where you fake smiling is so radiant, maybe that's way people don't understand your suffering...

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    1. My back doesn't always hurt as badly as it has these last few weeks, but it does always hurt enough that all daily tasks are difficult.

      I'm not always faking my smiles but I was when we took these photos because I was in so much pain. When I smiled brightly for real the other day, Beau said, "You're so full of joy, it leaks out even with all you've been through. I can't imagine how much joy you'd have if you weren't in pain all the time." He made me cry.

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  6. Wow! Just amazing! Thank you for speaking the truth!

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  7. I have written my comment as a poem:
    We hear you when, you cry in pain, your soul destroyed, again, again
    We hear you when, your body tried, you stand completely, crucified
    When all around, say "you look great!", we see your bloody, minded state
    We hear your body, screeching "foul", we see the courage, found and found
    We see your pretties, with a smile, when laughter ripples, for a while
    We are witness all, that I can say, hope it helps you through, another day.

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    1. Wow. This is the first poem I've had as a comment. Thanks. It does make me feel that I'm being heard. I like the bit about "courage found and found" because that's how it feels; I have to find it over and over again in the midst of fear. But I'm going to make one correction: they *tried* to destroy my soul but they did not succeed. To me, if there is one thing I am most proud of, it's that my soul remained intact -- bruised, but not destroyed.

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    2. Yes, sorry, I mucked that bit up! I wrote the poem because your post touched me so deeply that I had no words to respond. When I get like that, poetry is the only thing that works. I was a tad nervous writing to an English teacher!

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    3. Maybe we should change the line to "your soul abused, again, again"?

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    4. You didn't "muck up." It's just that people talk about "destroyed" lives and souls and I just want to take that power away from my abusers. They tried but they failed. I wonder if, "your soul misused, again and again" would work?

      English teacher or not, I was deeply touched by the poem and its sentiment.

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  8. Go ahead. Take all the cranky time you need ... no use adding the exhaustion of a false front, and I'm pretty sure you have a face you put on just to keep from freaking out well-meaning people. Your comparison of sciatica to fingernails on blackboards is completely apt. I had an extruded disc some years back that was agonizing for just a few weeks, and I know that's just a touch of the pain you suffer all the time. But it is just like that.
    I'm glad to see your take on the "cane" as accessory rather than necessity. I've never thought of it that way, but I see your perspective. Tails and a cane ... my first thought is Fred Astaire. I always loved it when he affected the gentleman's stick, implying the dignity of the society gent, then using it as a dance prop and dance partner, all dignity-free while flying around the dance floor. Eye opening to see another perspective of something more insidious in women's costume than just another antiquated menswear affectation of social class.
    I almost hesitate to tell you that you look pretty in spite of the pain you're in ... really, I'd take that in a heartbeat rather than hear that I look like crap when I'm not feeling well. The jewelry obsession is completely appropriate. Sure polishes up a casual look like nothing else!

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    1. Well, the cane is a necessity sometimes, though some think it's just an accessory. But, if I have to have one, I might as well make it match my outfit. I don't exactly mind when people say I look good despite my pain, but I do mind when some people then think that means I'm "faking it" or just a hypochondriac and I'm not disabled. That's the part I hate. Yes, tell me I'm pretty! It's hard to feel like I am sometimes.

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  9. Dear dear Charlotte, may I just give you a big hug? I imagine you free of pain and happy! You are a very beautiful woman with a very beautiful soul! Your partner is a treasure, and so is his love. Much joy to you both! xxx

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    1. You know, very early in our dating, maybe the second or third date, Beau said he looked into my eyes and saw my soul and knew it was good and beautiful, no matter what barriers I put up because of my brutal past. He doesn't usually talk that way, so it's kind of amazing to hear you say exactly the same thing.

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  10. So sorry. So very sorry for all that you've been through.

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    1. So am I. What else is there to say? So am I.

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  11. Charlotte thank you for sharing! I hate what you have endured!!!! And what you still live through both physically & mentally. You are in my thoughts and prayers.God Bless you for having the strength to share. You are a beautiful strong intelligent woman. !!adadmire you

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    1. Thanks. I hate it too but somehow I'm still here, soul intact. I don't know how sometimes, but here I am.

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  12. what a brave girl. so strong. I admire you and hate what they did. thank you for your honesty.

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  13. The chronic pain throws a wrench into even the simplest things in life. I feel as though it's robbing me by the minute, by the hour and by the year.

    Keep smiling and I will too.

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  14. I've enjoyed getting to know you through your blog, Charlotte you are a survivor and an inspiration!!!
    XO
    InMyJoi.blogspot.com

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  15. a random picture of Brooke Shields brought me to your other blog post and then from a link there it led me here. I felt a big pang in my chest in my heart and then a sickness in my stomach. I was molested too at 9 and raped years later. Anytime I hear things about children it grips me tightly. I just wanted to say as someone who understands, that I feel you. I am very sorry about your back and how it was made worse by your horrible attackers. It all just really makes me want to become a vigilante. Call me terrible, but i would like to just rid this earth of the people who can do that to children. A big sympathetic hug from one soul who understands to another. This triggered me... I am going to feel this pain all night and probably for a while. <3

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    1. I do hope you slept well afterall. Thanks for your empathy. First and foremost, I write these hard truths for others like myself, who have been there and who suffer because of it. So I'm glad you found me. I also write to try to raise awareness so that people are moved to DO something about child abuse. I too get a vigilante impulse, though I don't act on it. I write instead.

      But remember too that my blog is about style and beauty. We need to keep a balance. We need to allow the good things into our lives as well as the bad. We deserve them! And it keeps us from being destroyed by what was done to us.

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