Tag: scoliosis

  • Sometimes I Remember What Bending My Spine Feels Like

    My body is falling apart.  It was happening slowly, then I had a hysterectomy and now it’s happening not so slowly. When I lie on my left side, now my right leg longer than my left, above the knee. 

    Which is interesting, because my legs were measured over a year and a half ago from the hips and that’s not the longer leg.

    My spine is collapsing in on itself. My hips are contorting, my spine is corksrewing like a single helix, and sometimes when I lie in the bed just right depending on the angle, I can feel the rods in my spine as the only barrier between further collapse.

    There was a time when I couldn’t feel the rods at all. And I still can’t, except in very specific positions. Positions that used to be comfortable to lie in at night.

    And sometimes I try new positions. I’ve tried lying on my back to sleep. Occasionally I do sleep on my back. And when I do, I wake up feeling like my right shoulder is attempting to cave in toward my left hip. Which, it is.  The left side of my body is the weak side of my body. It is the side that is collapsing. And my right shoulder is caving forward. And I lean back when I am not paying attention to my posture. 

    My posture is much better since we got rid of the reclining couch, now that I am sitting in my rocking chair full-time when sitting in the living room. 

    I try to resist lying on my left side at night.

    I remember after the scoliosis surgery in 1993. I was so young, and the surgery involved an incision that spanned the entirety of my left side. I remember the first time I could lie on that side again after the surgery, for brief periods. 

    That curve that was around 91 degrees or so the week of the surgery, that got corrected to the 45-degree range ultimately, with a corresponding curve now….and those Harrington-Luque system rods that line my spine from my shoulder blades, drilled deep into my hips. And all those little twist ties, as I call them, still there to this day. 

    Sometimes, when I feel the force of those rods in whatever position I’m lying in bed at night, I think about those twist ties wrapped around my spine. And I wonder what happens if one gives— whether the tie gives, or whether the bone of my spine gives first. 

    I remember being in the bathtub in the days before the surgery. At 13 years od, I remember bending my spine in that tub, and I remember knowing that I needed to remember that feeling, that I would never feel it again in a couple of days— maybe the next day; I don’t know. 

    If I try really, really hard, to remember, I can remember that feeling even now. It’s been 33 years and a few days, and even now, I do remember that one specific moment. I remember telling myself, willing myself, to remember that feeling.

    Sometimes I can’t remember. Tonight, I can. 

    My left side is most comfortable to lie on to this day. The primary curve bends the opposite direction. 

    But my left side has its own curve now, up above my ribs and into my neck. I know it is not a great idea to lie on it regularly.

    And yet, I find myself caving to my most basic comfort positions when I am exhausted. And when I am exhausted, that involves lying on my left side, holding a bolster to sleep. Comfort wins. 

    Bipolar disorder and PTSD is pretty much the worst combination the universe could have sent me for severe, progressive scoliosis. 

    I have spent literal years in the bed depressed. Not a great recipe when activity and strength is required to maintain my internal scaffolding. 

    And queue days like today. Good days make me want to try.

    My Daddy and Jared installed a Swedish ladder system in our bathroom several weeks ago. Some days I touch it, some days I don’t.

    This morning, I hung for a couple of minutes before we went to Dawsonville.

    Tonight, I sat on my stool by the ladder, and just sat there leaning forward, with my arms pulling on the highest bar I could reach. Then I climbed up the ladder and hung, and breathed for a minute. The muscles under my left arm are pretty darn weak. Just hanging on, even while sitting there, stretched them in ways that were strenuous. 

    So, I came out and worked on my balance exercises I learned in physical therapy over a year and a half ago. I stand on one of my favorite stools to do those exercises. Then I laid on the floor and did some reps with a 2 pound weight. And I tried my breathing exercises while I did my arm reps on the floor. 

    Schroth breathing exercises involve visualizing inflating the parts of your spine and torso that are deflating. And doing that involves getting in touch with the fact that my body is indeed, contorting in 3D. Which is tougher than it sounds. I can look in the mirror and see that my left side is collapsing with no shirt on.

    I can look and see the dip in my shoulder. I can look and see that on the corrsponding side, my hip is higher than the right. But in my brain, my spine feels straight. It fights my brain to get in touch with the reality of the geometry of my spine. 

    And the amount of concentration required to do those breathing exercises that inflate the bottom back left of my rib cage and lungs and spinal column…..It’s effort. We’ll say that. 

    And when I am doing those breathing exercises correctly, the intensity of the activation required of my lower right abdominal muscles…..it’s pretty darn strenuous and it requires no small amount of concentration. 

    And all that is well and good and promising for the Schroth method, except it requires just the right conditions.

    And, I’m working really hard on stability. Life is good these days. We have a household routine, Jared and I are luckier than we deserve both with the boys’ health and their determination and ambition and accomplishments and how they carry themselves. 

    And, the breathing exercises are hard. But with each session, I become more aware of my body’s unique geometry, my own place in space. At 46 years old, I may be late to the game, but everyone starts somewhere, right? 

    And tonight, doing those breathing exercises on the floor for 20 long reps while I lifted those weights straight ahead and over my body……

    Tonight those breathing exercises reminded me that I do indeed remember what it felt like to bend my spine, before that forever fusion that solidified most of my spine. 

    Fediverse reactions

  • bet my back is more messed up than yours

    I referred to it a little on the 12th but last week, on the 12th, I had a check-up with my orthopedic PA.

    I’m not really sure why I even go. It’s not like there’s more surgery I will ever let them do to me, even if my neck discs are seriously degenerating.

    The photo above is my back as it looked on x-ray on Wednesday, November 12. 

    It’s pretty crazy. 

    And that whole top curve wasn’t there when I was a teenager or young adult. I assume that is what 4 pregnancies (yes, there were 4 even though there are only 3 boys) and years upon years of laying-in-the-bed-depressed depression will do to me with my brand of scoliosis.

    The only real comment the orthopedic PA made was that indeed, there is significant degeneration in the discs in my neck. Such that actually, there was a blank space where there should have been a disc at the base of my neck in front, actually. 

    That’s probably why my neck hurts when I transition from standing or sitting to lying down in the bed. 

    And maybe I should feign terror at the utter basic breakdown that is my spine, that is my body.

    But to be honest, it’s just my normal. I’ve dealt with this since I was 6 years old, way back in the back brace days.

    At least I’ve spent the vast majority of my life without the large lumbar hump that was on the left side of my back as a kid.

    My orthopedic PA says she doesn’t measure degrees. She says she’ll know when she should refer me to her surgeon, and he’ll measure degrees then. She knows– rightly– that people obsess over degrees of curvature when– also rightly– degrees don’t necessarily mean a damn thing, especially when there’s rotation or some other such craziness going on.

    She didn’t say this time, though, that she’d never see me needing surgery again.

    Not sure I would do it though. I’d have to be in an awful– a very awful– amount of pain to agree to give up the mobility I have in my upper back and neck, and that’s what would happen with more fusions.

    I’ve had probably 2% of progression in the last two years. She says that’s pretty stable for my particular situation. So much so, that she won’t worry about x-rays when I come back next year.

    I did get another referral for physical therapy. I still know a lot of the exercises I was taught last year but I haven’t been super reliable about it since I got depressed and had very bad mental health in the Spring and summer. And of course, I did have a whole hysterectomy in May.

    All you people with normal bodies, it must be nice.

    When I look at this photo of my x-ray though, it makes complete sense as to why I have mental health issues AND why I have been the object of not-nice men.

    Easy to prey on the already weakened.

    As my oldest would say, “It is what it is.”

  • a different kind of selfie — atlanta, ga photographer

    a different kind of selfie — atlanta, ga photographer

    A Different Kind of Selfie — Three days ago, I photographed my back. It was compulsory; I had to do it. And yesterday morning when I got home from taking the boys to school, I sat down and wrote the majority this blog post in an equally compulsory way. I stared in bits and pieces of seconds at the photo in question as I wrote the post.

    I got home from an errand before the plumber arrived to fix our toilet three days ago. In a mad rush to finish and get dressed before the plumber got here, I stripped right in the studio. I got out the camera and tripod and light and just took photo after photo until where I stood, with my back to the camera, and got the whole thing I wanted centered correctly.

    For those of you who may not know, I had/ have severe scoliosis— the curve was 87 degrees when they operated in 1993. I grew a full inch and a half in that 10-hour surgery that saved my life. I found out in college that the curve would have eventually crushed my heart, uncorrected. Last I knew 20 years or so ago, the curve had settled at around 45-47 degrees when all was said and done after the surgery.

    I’ve never really taken a photo of my back, a different kind of selfie, before. I’ve seen the scars, etc. in the mirror, but I’ve never taken the time to really look at it, beyond in passing in the mirror.

    So, thirty years and nearly six months later, here we are and I photographed my back. And I sat here, for a few seconds at the time, staring at it. I can’t look at it for more than a few seconds at the time,

    I am not self-conscious about the scars themselves. As a teenager, I’d pull up my shirt and show the front and back scars (It was a 2-part surgery and I have a scar that winds down my side and around front in addition to the one that spans the entirety of my back), I’d show them off just for fun. When I was younger I’d wear dresses and shirts that would show the top bits of my back scar. It was a sort of “see how tough I am” sort of mentality thing. One of my last psychiatrists said the showing off was trauma response.

    With the photo, a different kind of selfie, what I wasn’t prepared for (though I knew it was there and wanted to see) was the visual evidence that the scoliosis did indeed keep progressing as I have gotten older, as I have gotten more sedentary. It’s unknown but doubtful that the sedentary lifestyle is the sole-cause of the progression. My scar makes a sort of ellipsis shape now, with a mini-S in about the spot where I had a ginormous hump in the lumbar portion of my back as a kid. My bottom end continues the curve, where things should otherwise be straight.

    I wasn’t quite prepared to see the bunched up fat sitting on top of the scar that wraps around my side and up the left side of my back, nearly to my shoulder blade. I’ve known it was there because it makes nearly all bras uncomfortable now. But seeing it there was another thing entirely, not just my reflection in the mirror. As I sit here looking at it now, I see a sort of stretch mark has formed above the fat pocket, and that fat pocket is indeed sitting right above the scar line. It looks like my recent weight loss has left a tad bit of loose skin, even, at the top of the crease in my back. A solid mark of middle age.

    For the photo, a different kind of selfie, I purposefully stood in my most natural, comfortable state, letting my left shoulder droop purposefully. Most people don’t know this, I assume, but when I walk around I consciously hold my left shoulder up much higher than is natural. I got so good at it as a young adult when I was in good shape that I could walk around without it mostly drooping at all. What surprised me about the photo is I expected to see a more pronounced droop than is actually there— in my mind it is more pronounced than it actually is.

    I wasn’t prepared to see the little indentation of the chest tube spot, which would mostly only look like a fat roll indentation in the photo to anybody who didn’t know what they were looking at.

    I wasn’t prepared to see the mottled skin of solid middle age, all along my back, where it used to be creamy smooth.

    I had two different edits worked up, both in black and white. I called Jared over Tuesday night and we agreed on which one was the better edit. The one we settled on has more contrast, more definition to my shapes, shows the scar more completely. The sun was coming in bright through the double doors on the sitting room side of the studio. Eventually I’ll need to get shades to cover those double doors or I am going to have trouble controlling light in the studio; the sun is shining on my right side and on the right side of my hair in the photo, despite having the Lume Cube on full power on the opposite side of the room. (And no, our only neighbors on that side cannot see in those double doors even without shades.)

    This photo, a different kind of selfie, is more than navel-gazing. It allows me to face head-on in a tangible way, beside the ever-increasing presence of pain, particularly in my upper back at night just after I lie down— it allows me to face that there was a force completely beyond my control that has shaped my life in more ways than I can count.

    This photo, a different kind of selfie, probably equally as well represents my humanity, just as much as that little inch-and-a-half piece of the metal rod I have from the top of the rod that had to be cut out in December of 1994, because that silly little twist-tie had popped and the rod had made a nice sized-callous under my skin where it was poking out, leaving me breathless from the pain occasionally.

    And, this photo, a different kind of selfie, helps me come to terms with my age, too. I am painfully, painfully aware that as a teenager, that scar was straight as a line, with no curves in it at all. It is visual evidence of the reason I am now closer to 5 foot 8 inches tall, than the 5 foot 10 inches I used to be. It is visual evidence of fairly severe deformity inside my body. For a perfectionist, that is a hard image to see in oneself.

    On March 1, 2023, about 5 AM in the morning, I felt a sort of “pop” behind my heart area, is the best way I can describe it. It wasn’t painful, but I was awake at the time anyway and it was a sensation pronounced enough that it sort of made me lose my breath as I sat on the edge of the bed. Jared thinks it was a muscle spasm or something like that and maybe it was.

    I’ve had an x-ray of my back since that time and so I know it wasn’t anything that is going to cause issues, at any rate.

    But, I sort of look at that event as a marker reminder that I am living on borrowed time. I don’t know how long I would have lived without that scoliosis surgery when I was 13. I know that having children would have been much more difficult and more painful and more dangerous. I know that I probably wouldn’t have lived to be 44 years old.

    There is a sort of grief, too, that bubbles up to the surface, knowing that while everyone has their trials in life to carry, this particular one has been mine, and mine alone. It makes me tremendously sad that I have been so very hard on myself my whole life, for various extremely trivial, superficial reasons that never really mattered all that much.

    Looking at this photo, a different kind of selfie, brings into crystal clarity the fact that I am grateful that Jared came along when he did, and that I am with the sort of man I was meant to be with all along, despite the fact that prior to Jared there were a few men of questionable character— it’s no wonder at all I was so desperate to be accepted that I lowered my standards, allowing men who had no business in my life to be there, for way longer than they should have been there. I am grateful that Jared came along and taught me what respect from a man really looks like.

    I will never be one for proper boudoir photography. Seeing myself like that isn’t interesting to me. But this exercise has been a big lesson in learning to be kind to myself, and reminding myself that there is more strength in me than I give myself credit for.

    This epitomized my empowerment session. I doubt it will ever live anywhere besides my external hard drive. But the photo exists, for me to see, when I need a few minutes to just remember exactly why my hips hurt late at night, and why my upper back hurts when I lie down first thing in the bed at night, and mostly it’s there for me to remember exactly how strong I really am and have been my whole life long.