An Update and It Ain't Great

Some readers of Sublime Mercies have expressed concern about me since I haven't posted anything new lately. 

I won't lie. Things have been tough.

People who read my blog tell me I'm "strong" and "amazing" and "brave." Not so much lately.

I love how Milo likes to reach out with his little paw and touch me and Beau.

My pain levels have been high, so most of my life has been about this view: my own knees propped up in bed, a television, a cat or two, maybe some discarded clothes I can neither wear, nor find the energy to put away.

That's been bad enough, but bad went to worse.

About a week ago, the pain killers I was taking started to make me sick. About the same time, I started having body memories and flashbacks to some of the most severe sexual abuse, which only made the nausea worse. Remembering disgusting things that had been done to me, I found it hard to eat. I always do when I'm upset.

Panic attacks followed. I normally have about one panic attack every several months. I had three or four in a week.

Meanwhile, poor Beau got more and more worried about me so his own anxiety levels have been high. There's been some bickering, it's true. He worries about me, I worry about him, we just worry worry worry. Stress grows.

Good things have happened around me but it's been hard to notice. Our rose bush/tree bloomed its first bloom and has since burst forth with probably 100 roses.

Whatever.

I had my head in a bucket.

And I was getting sicker. My stomach got so bad, it became distended and extremely painful. My doctor sent me to the Emergency Room late on Friday night, where I was poked and prodded and pushed and pummelled, and left with yet another set of livid track marks on my arm. The worst part was the CT scan. 

It was all very triggering. I've been poked and prodded and pushed and pummelled far too much in my life.

It didn't help that this particular ER was full of drug addicts either having a bad trip or trying to trick the doctors into giving them drugs. Some of the tales I could tell from that night are amusing -- but not right now, not yet.

At least all the tests came back saying what I had already suspected: I was just really sick but not with anything like appendicitis. 

So: back home to bed again.

My cat, Bobby, has been a great comfort. Cats like ill people. Ill people lie down a lot, and have heating pads, and that's cuddle heaven for a cat. He's been my constant "lie down" companion since Wednesday, when I got barfy. 

But I think it's more than that. The day after I'd been in the hospital, he followed me everywhere, not wanting me out of site or even out of touching range. I think he loves me.

Sunglasses and gold chain: Vintage; Pendant: from a Catholic tchotchkes store; Shirt and jeans: Reitmans. Shoes: Ecco

Needless to say, fashion and style have been out the door. It's been about what little comfort I can achieve.

Yes, sometimes this has included sunglasses -- because I've been crying, or in case I cry again.

Shirt: Reitman's; Earrings: Jessica

This is the most fashion-forward thing I've done in about two weeks: a little faux bob. It was cute, I guess. 

Whatever.

My hummingbird has been visiting a lot. That's been nice. She comes right to the feeder on my study window, with her tiny little heart beat and her funny little tongue. I do love her.

I'm not sure why I like birds so much, but I do. I guess they feel like a visitation from the realm of what the Romantic poets called the Sublime, and what others might call God. Birds, especially hummingbirds, are Sublime Mercies: a little bit of the divine getting through to this world, providing just a little relief in my suffering.

You know when I wear my little dove necklace a lot, that I'm really feeling weak and frightened and low. It's a way to remind myself that God is with me. I've needed that a lot lately. 

That's it: an update. It's been bad. I'm not always strong. 

I think I'm improving but it's still rough, physically and emotionally.

Here's hoping for better soon, if only enough of a reduction in pain that I can take myself for little walks of a few blocks again, like I could in ancient history -- a month and a half ago.

Red Roses and Pain Poses

Okay, so I called this post Red Roses and Pain Poses and there are no roses here -- not in the dress or in the trees. But it sounds good, right? Allow me some poetic licence, okay?

My city is particularly known for its early plum and and cherry blossoms lining street after street.

It's really spectacular but I find the plenitude and abundance of blossoms hard to truly capture on camera. 

Dress: Gigi ; Sweater: Reitmans; Boots: Ecco; Raincoat: London Fog; Cane: Life; Bangle, brooch on coat, and Sherman brooch: vintage; Earrings: boutique

They extend for block after block and, when the petals begin to fall, the streets look like they're covered in snow drifts but those are pink petals, not flakes.

So I thought I'd dress to match the day. I got this pretty, flowery, slightly retro dress on sale for $20 at a long-standing shop that was finally closing. It generally catered to old women; whenever I went there, I was the youngest person in the room. That's fine by me. In some ways, I've been an old lady all my life. Ask anyone. Now, with the cane... Well, now I get the bad parts of being an old lady too, well before my time.

I thought I'd go all out and pair the dress with pink earrings, a pink sweater, and a red bangle. I don't think the red and pink actually clash. Do you?

And don't forget the pink Sherman brooch, which I adore. The dress is cut too low so I pulled it in a bit for modesty and used the brooch to hold it in place.

The day was a bit cool, so I dug out my London Fog raincoat as well which I think always adds a touch of classy, figure-flattering tailoring to any outfit.

Plus it gave me a nice excuse for another brooch, which matches the Sherman one.

With boots, I didn't have to wear tights to keep warm. When my back is bad, the pinch of tights at my waist and lower back really hurts. 

And the pain has been really really bad lately. If you were to spend any time with me, even on good days, you'd see this look on my face often. You'd see it even more often lately.

I do sometimes still "fake it" but, mostly, I don't try to hide my pain anymore. For whom would I be doing it? Certainly not for myself. It's no crime or social faux pas to be in pain, and hiding it hurts me even more. If it makes others uncomfortable, well, it's really not my problem. Besides, their emotional discomfort can't match my own physical discomfort, I'm sure.

I've been using my canes a lot lately, even in the house, and always when I go out. Normally, I can go for months without using it except on public transit or when I know I'm going to have to stand still for a long time (like at a party). 

But, these days, it's with me all the time.

Do notice that it's coordinated with my outfit. I have a brown cane to go with warm-toned outfits and a black one to go with cool-toned outfits. I would own more if I could afford them and/or if I used canes more than I do. There are lot of really pretty canes out there, which is more than I can say for most disability aids. 

When it comes to the world of disability aids, there is very little range for self-expression. It's as if it doesn't occur to the makers that some disabled people enjoy beauty, just like anyone else.

Soon, I'll be getting a mobility scooter, thank God, but it doesn't leave much room for self-expression either. It comes in a huge range of fun shades: black, blue, red, and beige. Bleah. I may bedazzle it, or airbrush a dragon on it, or something to make it look better. We'll see. Suggestions are more welcome.

As you can imagine, I'm not smiling much lately. Like I say, faking it is just one more effort when remaining upright is effort enough. 

But, if anyone's going to get me to smile (see below), it's Beau. He'll do practically anything to make me laugh when I'm down, including a little dance with the cutest little bum wiggle. He has a very nice bum.

Not that I can join him dancing. Upright time, let alone dancing, often leads to one of my "pain poses" and, lately, it does so even more and even faster than usual.

Most of them involve trying to curve my pelvis forward to relieve the terrible pressure on my lumbar region which is where I'm most badly injured and where my pain rests most brutally.

Have you ever tried taking off a coat with a cane ...

... or buttoning a button ...

... correctly ...

... or taking off a sweater with any decorum?

Even if you succeed, now you have no free hands. And what do you do with your purse or bag? Beau's holding mine.

Try an experiment some time: get dressed while holding a cup in your hand. Fun? Nope. Easy? Nope? Now try going out and holding that cup in your hand all day. 

Better yet, make it a round ball, so every time you try to set it down for a second, it rolls to the ground. Remember, every time you let go of it, not only is it likely to fall down, but you will be in more pain. Don't let go of the cane unless you have a counter-top, or a wall, or a tree to lean on to reduce pain.

Are you having fun yet? Me neither.

But I do sometimes still have cause for a genuine smile. Here, a very tough looking motorcyclist slowed down to watch the photo shoot and said I looked lovely and it was a very pretty spot for photos. That was nice.

I tried to do a little twirl. 

It hurt.

I do my best. It's just going to have to be enough.

But it's my life, and I don't have to smile if I don't want to. 

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

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.)