This post is brought to you by the inspiration of my friend In My Eyes whose blog is all about bringing awareness to invisible illnesses. She is wonderful, refreshing and takes a very interesting, positive spin off to her struggles with invisible illness. She is an inspiration in perseverance and creating soulful art. The following post is my own account of invisible illness in my life, so read on, and then check out her fancy dandy blog to read more about her!!! 🙂
While it is the very end of June, this month is dedicated to Scoliosis awareness. Scoliosis is when there is lateral curvature and rotation of the spine. I don’t know much about the statistics for the condition, but it’s a brutal condition that can really run amuck with your self-esteem and body image.
Some people experience back pain or related pain because of their scoliosis, luckily though, I wasn’t one of them. I count my stars for that.
I was diagnosed early with scoliosis, at about the age of six, by my family physician. I was referred to Boston Children’s Hospital for a doctor in Orthopaedics. Up until three or four years ago, I was still seeing that same individual. I have to actually call up soon to make a new appointment.
I always felt that I was somewhat different as I grew up. Not in an excessive fashion, rather I could feel how my right leg was longer than my left. Even today, I leave more of an impression with my right foot than I do with my left.
I also grew up being born with a birth defect, called spondylolisthesis. This is when there’s a fracture in the vertebrae and one of them slips forwards.
I had an ‘S’ shape of scoliosis, but it was well controlled for the majority of my life.
That is, until, I got a spinal fusion surgery for my spondylolisthesis. This involved a posterior (back) surgery where the piece of bone they used to fuse my spine came from my hip (I felt it for a day or two after for sure), as they fused the L5-S1 area. I’ll include a picture here if you don’t know what that means:
I had that surgery when I was 14 years old on November 16 2007. I took some time out of …. eighth grade … in order to have the surgery. I was given a support brace afterwards to wear to help me support myself so I wasn’t using my back to do so. Keeping the junk in all the right places, essentially.
It was around this time of post-operation that my Mom started to notice the more classic signs of scoliosis. That my shoulders were shifting, one was getting higher than the other, and that my hips were doing the same too.
When we went back to the doctor’s, it turned out that an unforeseen consequence of the surgery meant that the scoliosis was getting worse. I felt crushed. I felt it was somehow my fault, when in truth, it wasn’t at all. I recall asking myself why I was someone to have to suffer from scoliosis. Why I couldn’t be ‘normal.’ Why I couldn’t have a straight spine, and feeling envious over those who did and weren’t even grateful for it.
They walk along
Their faces —
Are on fit and
My eyes follow
The way their
Aligns so well,
How their hips
Move from side to side
To be seen
It’s like they’re
Though I know
Showing off what
I can never possess
Uplifting the emotion
Inside of me that
I should have it,
That it’s what I’m
Supposed to be,
It’s a sticky,
That just desires
So desperately to
Consume me —
I wish I could
Shake it off,
To rip its grasp
But it always
Finds a way of
And each time it comes I feel myself shattering within,
Incapable of possessing something they don’t think
Twice about having…..
I didn’t like going to the beach or to pool parties because it was like being flaunted with everything I couldn’t have. I felt ashamed of having scoliosis and tried to hide the condition as best as I could. I was very private and very closed off about speaking about it. I didn’t want to talk about it at all. I felt too emotional about it, felt too vulnerable because of it and thought if I opened up about it people would mock me for it. So I stayed quiet. And quiet. And quiet.
I feared rejection from my peers so when the scoliosis got to the point where I was required to wear a Boston brace for some 16 hours of the day, every day, I refused to wear the thing to school. I tried proposing wearing it to be bed instead and whenever I was home and that worked for a while. I think I told people I wasn’t comfortable with it, but really it’s because I didn’t want to be bullied for being different (as this was right around the hell of middle school *shudders*).
To wear a brace is quite uncomfortable. The purpose of it is meant to keep your spine from moving in the directions it wants to go. It’s to keep it as close to okay and not bothersome for you as possible.
However, treatment for scoliosis still isn’t in its prime, not that I’m aware of. It turns out that sometimes you can do everything right and STILL have to wind up with a spinal fusion surgery because things weren’t enough. Braces aren’t even all that effective to keep people from having to have surgery.
When I was 15, in ninth grade of high school about a year and a half of wearing my brace when I could, my Mom got surgery herself, as she was my biggest pusher to wear my brace, and I seized that opportunity to refuse treatment.
I never out rightly said I was refusing treatment, but I knew that I was. I made the disillusioned decision into 2009’s new year, that I wouldn’t give up on anything I hadn’t already given up on. Unfortunately, I had already given up on myself.
My all or nothing/black and white thinking got me to believe that if I couldn’t have a straight spine, that I didn’t care and wouldn’t do anything to stop the progression of my illness. I used the strategy that if I didn’t think about it, about the scoliosis, then it wouldn’t exist and I wouldn’t have to care about it and I wouldn’t have to deal with my emotions about it. Essentially, I dealt with it by not dealing with it.
I also remember being told that if I were to wear my brace, I’d go on to live a happy and fulfilled life. Or at least, that’s how I took it.
However, growing up as a child, for no reason in particular, I felt very lonely. I felt alone. And seven years of feeling a devastating amount of loneliness and having no one know about my suffering had caused me to think that I deserved to be alone for all of my life. So, when at that crossroad of getting better, I chose the unbeaten path. I felt I deserved to be alone and unhappy, so I chose the route of lack of treatment that I thought would give that to me.
I created and chose a hell for myself that I was stuck in like a rut for 3 years of my life.
I hated being told that there were consequences to my actions, and would angrily snap at anyone who told me that. Did they not understand I knew that all too well? That I was living trapped inside of a body that I could not control?
Sure, I could of tried wearing the brace again, and some times I did, but what was the point? I was only going to stop wearing it again. There was no point. I was a failure. It was all my fault.
Day in and day out I would shun these thoughts and emotions from myself, trying desperately to pull free from my self-induced agony. Once a month I would be in the throes of guilt as I sobbed quietly in the night, knowing I had made a horrible choice and feeling helpless to do anything about it.
The worst part was when my Mom, having seen so much of my fake unconcerned attitude, truly believed I didn’t give a crap. I felt I had played on the act too far and too well.
By that point, I was sucked in so deep, I didn’t see a way out. I couldn’t let anyone in because it was too emotional for me to deal with. Every time I spoke about it to myself, I would sob, and I couldn’t, just couldn’t, communicate that pain effectively to anybody else without crying, too.
I hated being hugged, as I felt other people would be able to tell that I was different. I hated showering most of all, because I could feel every bone that was out of place, every vertebrae that was out of line. It was horrible. I didn’t know how to let go, even though I desperately needed to.
I can only be grateful that self-harm and suicide was so out of the question for me, I didn’t even know about self-harm and I didn’t ever consider suicide to escape my problem. I felt I had deserved to suffer, so suffer I did.
I would have moments and days where I would feel inspired to change, but the feeling would fade or I’d give up too soon, relying on myself with the negative self-talk, that I was just going to fail once again, so fail I did.
For three years, this went on. My first romantic relationship I found it difficult to be close to my boyfriend, because of all the shame I held about it. I did admit to him my issue, while crying, and he assured me that he wouldn’t judge me for it. I felt a bit better, but I knew that I was going through too much of my own hell to be there and available to another person, so our romantic relationship ended (we are still friends to this day though).
As the scoliosis got worse, I could begin to see more of the changes in my body. I’ve always been slim and so these changes were horrible to witness. I actively avoided mirrors because I didn’t want to be reminded of my mistakes.
When I joined deviantART in 2010, it gave me the opportunity to return to artwork. Artwork gave me the courage and strength to survive and cope through my scoliosis. Over time, I slowly began to open up about my struggles. I wrote indirectly about scoliosis and then directly about it. I shared my concerns and my despair, and I made friends with people who had my back, and one friend in particular, PoetsHand, who got me to realize that some of the grudges I was holding onto from 2008 weren’t necessary (and so I let them go). While this activity online occurred, I socially withdrew from those around me. I just wanted to be alone with my scoliosis. I began to identify completely as scoliosis, and lost who I was to the condition. It ruled my life. It was my shadow.
Thump. Thump. Thump.
It’s coming for me.
I know it is, but this time I don’t run, this time I don’t cry, I don’t look away, I don’t move. I stay there with a blank expression on my face. My hair doesn’t move, I barely even breathe, it’s like the air around me has suddenly died and everything is quiet. Except for the approaching noises.
Thump. Thump. Thump.
It’s gaining speed and my eyes narrow as I see part of the black, smoky figure curve around the corner of the wall. It’s turned so dark and evil over the years and I feel a dagger of emotion strike me hard, and the tears well up in my eyes, I just never seem to have any control over them.
Never have any control over anything….
The blackness is swirling closer, I can see things inside of it that represent myself.
The guilt, the pain, the desperation.
It’s so evil, so dark, and all I’ve done is allowed it to feed over me for so long.
I never picked up my life jacket, never strapped it on when it really mattered, never persevered when something could have changed.
Even now, it just feels like a hopeless cause, that it’s speeding through my body wreaking havoc and change that I just can’t get the life jacket on fast enough to stop it. I don’t know what to do and that in itself freaks me out the most.
Am I supposed to just continue on like I have before?
Am I even strong enough to do that?
Why did I make this stupid decision? Why did I let it take me? Why did I let it control me?
The black cloud gains more speed as it can see the effect its presence is having on me. And I sit there, yet again, watching it, letting it come, not bothering to do anything. Because that’s just how I am. I don’t do anything. I just let it come. Why stop now?
Within seconds, the cloud is around me and I look up at it slowly. I take in the look of it, the emotion I feel every time I stare at it….stare at myself… It grins its invisible smile and slides in all around me. It nips at my body, pulling down my right leg, pushing out my left hip. It goes up my spine and shapes it in that “S” that’s not supposed to be there, kicks at my rib cage, protruding it forward, brings down a shoulder and then it sits back and watches its masterpiece.
And I stay there, the guilt washing over me, as I look down at my battered body, unable to fix it.
Unable to do something anymore…. or at least that’s how it feels.
My decision, my own decision, allowed this to happen. Maybe I didn’t ask for it, but I didn’t stand up to fight either. I sat here, in this dark, cold room, and let it just come in through an unlocked door and let it take control of me however it pleased.
At first I hadn’t… but time lost itself and my willingness to fight disappeared.
And now, here I am.
In a room all by myself, alone with the feelings of guilt and sadness. My life jacket hidden in the corner with a blanket thrown over it…so I wouldn’t have to look at something so simple that could have helped me so much…if I just would have tried.
The black cloud still hangs over me, breathing its truths into my ear whenever I think about it…think about what I did or more correctly what I didn’t do.
It likes to run a finger down my cheek, and catch my tears in its hands, and maybe it even likes to laugh at my pathetic form.
Or maybe it’s not even real to begin with. That would be nice if it wasn’t but I know all too well that this is real.
This is who I am.
At least, who I am now.
I’ve let it take so much away from me, I don’t think I want it to keep taking…. I think I want to take something back, I want to at least get out of this room. To really seem like the person I am on the outside, because this darker self on the inside is just too much to bare. And time is still changing, despite how long I sit in this room.
How much will I miss if I just let it keep me here?
Maybe this black cloud can take away who I am, or who I was meant to be, can change my being into its own little creation…but can it change me for who I am emotionally? I suppose it can, it has in a lot of ways that I failed to realize myself, but maybe I can gain some of that back.
All it takes are some steps forward. Some steps out the door, out into the world.
Some steps into accepting that I can’t change the past, and no matter how much I dwell over it, I know I’m still doing the same thing…so maybe it’s time to just get the hell over it… and just live.
At least in ways, I can take something out of this, some sort of messed up life lesson.
That if, there’s ever anything you can do, do it. Don’t just give up, because it’s not worth it. A disease can take your body, but it doesn’t have to take your mind too, not if there’s something you can do to help.
It always bothered me when people would post or talk about those quotes:
“Never give up”
Because I could NEVER find a quote that addressed the issue if you HAD already given up. To me, I felt, well gee, that’s great but I already GAVE UP a while ago, so what now? Is there no hope for me?
The truth was, not at all.
In fact, in 2011 everything changed.
At the start of that year, I knew I’d be getting my second spinal fusion surgery to help with the scoliosis. It would happen on August 5 2011.
I found myself entering 2011 and saying, fuck it, why am I doing this, why am I letting my life go on like this? I was tired of hiding, I was tired of being ashamed, I wanted OUT of the rut. I wanted to CHANGE. I wanted to better–I no LONGER wanted to live a lonely, alone life. I wanted MORE for myself.
In the summer of 2011, I got that much more.
It grips me.
Grips me like an ever tightening rope
Around my head
It pulls at me,
Jerks me back and forth,
Laughing at me,
And that same emotion,
Grips me again,
And I’m struggling between
Inside and the ones
That stare back at me
Through the mirror
I am afraid,
So, so afraid
What will happen?
I’m afraid that I will lose…
That I will lose myself
That I will walk down the
Same dark path,
Because it was the same one
I walked down before
I’m afraid I don’t have
The strength or the power,
Or the right personality
To change things
Once and for all
And even if I did,
Will that cure me of my
Or will they still be there?
Staring at me?
Laughing at me?
Will they always be there?
Will I always be their slave?
I don’t want to,
But I don’t think I’m
To go down the other
If I did it once,
That means I can do it again,
No matter how much it will
If I did it once,
If I was weak once,
What makes now any different?
I’m so afraid.
Afraid of myself.
I made some self-discoveries:
I feel as though, emotionally I’m still thinking I’m 14 or 15 years old. And emotionally I still haven’t accepted or realized that I’m 17 now, and who I am today is NOT the same person I was back then. Who I am TODAY knows more now, has learned more and has changed. And maybe I haven’t changed massively but I do, personally, feel as though I have changed, in quite a few ways. And that’s what counts the most, I think.
Basically, I am emotionally afraid that I will make the same mistakes I made before. And I don’t want to, I can’t handle doing so. But I still don’t know if I have that internal strength to do the right thing, THIS time. I am afraid that I will fail again, or I will do that one thing you should never, ever do: Give up.
But I reminded myself something important in this pep talk of mine. I reminded myself that I am NOT the same person – or as much of the same person – as I was back then. That NOW and THEN are two different things. This time, I have more things to fight for, and I think last time I never had a set goal or idea of that.
But this time I’m fighting for someone or something very important: Myself.
I did some photography:
And then I got my surgery: T12 – L2.
I got some of the pre-op and post-op pictures:
And this photo shows the way my hip was off and therefore I was off into another realm:
Although it was just another support brace, I made sure that time around that I wore my buddy old pal, even to the point I was wearing it a little TOO much ^^;
The second surgery I got they went in anterior (by the side) and used a part of my rib for the fusion process (by the way: Ouch.) This is what it looked like post-op:
Here’s what my hip looked like after the surgery:
I had taken off a month of school from my senior year in 2012. I returned to school going half days for a week before I joined full time. I wore my brace, and although I was self-conscious of it, nobody noticed lmao. Here’s me in a photograph with it on:
This was early on in the healing process:
In February 2012, I did a photo shoot with an interesting concept. I didn’t believe it at the time, but this photo shoot paved the way for me to in the future.
In the spring of 2012, I experienced that wonderful day where I looked in the mirror and thought to myself “You know what, this’ll do.” I had come to accept myself and my body as it was. Finally, I could say confidently that I thought of myself as fantastic, snazzy and beautiful 😉
It’s been months
Since these words
This paperThings have
Changed so much
I am no longer
I am no longer
I did not
I gained a
Part of myself
Time and change
Can bring you
I am no longer
I am no longer
In the rut.
I am no longer
Stuck in the past.
And as ready
As my unsteady
Feet can be
To face my
Future brick walls
And crush them down
One by one
If I did it once,
It does not
Mean I will
Do it again.
My mistakes —
I am more
I have found
I am loved,
I am cared about,
I am helpful,
I am empathetic,
I am willing and
Wishing to do
More than I seem
To be able
To do now,
But that doesn’t
I cannot do them
In the future
I am me,
I am free.
And most importantly,
All my asymmetries
And better yet,
I am okay.
I went on to actually do some scoliosis inspired drawings throughout the years. See below!!
I also used more photography:
Description to this piece:
The golden apple is all about medicine. It represents the cure, the answer, the thing that will “fix” you, the drug that has no side effects, etc.
The rotten apple [this one like EXPLODED when I threw it, it was AWESOME] represents everything BUT the golden apple. The gloves actually worked out for what you’d normally think of [ doctors ] but also because the glittery paint on the other two apples [dark red and green] was sticky xD
But while this rotten apple isn’t QUITE focused [my fucking tripod was pissing me off SO much! And my camera too XD] I liked the gesture the most, quite ‘Just take it damn it!’ XD
But yes, the golden apple concept. I quite love this concept =] Been using it a few times lately… Oh how I wished to have the golden apple before…
[Concept born September 3.2012,
Apples painted October 6.2012 and photoshoot accomplished October 6.2012]
Concept is about: “The Golden Apple” an unachievable, idealistic dream of those who may be both incurable and unaccepted of themselves – and the line they may balance precariously on if they do not come to such an acceptance (and certainly the willingness to try something even if it won’t “fix” you. (Damn you all or nothing thinking!)) Also, major on the teenage angst, but likely also applicable to other scenarios and ages. =] Because this shot features a rotten apple – it’s more on the realistic side of the concept. The Golden Apple shoot was heavy on having “golden apples” in the person’s clutches, but then (as the photo linked above shows) showing you, the viewer, an extended rotten apple (the one shown here).
It’s about a sort of taunt, like “here’s what you COULD have (or be, etc) but here’s what you ACTUALLY have” You either can see or wish or hope for something that you can’t actually have because of the limitations of the concept itself. It’s not about getting the golden apple, it’s about finding acceptance and okay-ness and good enough-ness with the rotten apple. Using the rotten apple to grow and learn and be the best you that you can be even if you’re not in a position where things are as good as they had been before or have always been a little off.
And lastly, an old essay from my first year of college:
You cannot fix a Scolio. It does not matter how much tape, love, determination, glue, socks, screws, rods or surgical hours you have to spend. You can never fix a Scolio. Scoliosis is one of the many medical conditions that has no golden apple. A doctor cannot reach into the magical, fuzzy pink apple tree and hand you down that pleasant, ripe fruit. Instead, all they can reach for, all they can ever hold, is a bruised, bent, battered and helpless looking apple. It is important to remember that it is neither their fault nor yours. You simply just cannot fix a Scolio.
But, near the age of fifteen, I did not realize this truth. If anything, I wanted to hold on so desperately to it. I wanted there to be a golden apple, more than anything else. I wanted the golden apple to be within my reach, and I settled for the fact that if the bark of the tree, the Scolio brace, could not give me that gift, than I would not bother in trying to wear it. It seemed pointless at the time. Why bother with something if it won’t make any difference? Why not jump the steps to what will lie there waiting regardless?
And so, I did. I do not think I ever realized the weight of this decision. Not until it felt like it was too late, at least. And by then, even when I did realize, it no longer mattered. I was not worth the fight for any apple. It was my fault that I lay defeat for Scolio, that I raised a white flag too early. It was my consequence to get screwed up, and I ‘deserved’ it. I let Scolio take me, when I merely should have been someone who had Scolio.
And Scolio was no walk in the park, either. Scolio took me down to a rut I never thought imaginable when I first turned away from the bark. I don’t think I even knew such a world existed, and at the time, I wished I never had.
But I did not fight it. I still let it take me by the hand. I still allowed myself to sink ever deeper, watching as the light faded from the room and hope dragged its body out of the air. As the walls grew thicker, the psychological effects doubled. I went from one day being ‘normal’ to the next where my anatomy got all twisted and asymmetrical, in a manner I never thought possible.
My hip extended out to the Pacific Ocean – wanting to become an island, apparently – one shoulder became longer than the other, my dancing spine rotated ribs, and then of course, clothes just wouldn’t fit right anymore. Most people worry about how jeans fit their legs, I had to stare with a frown at how the waistband got lopsided. And it wasn’t like something you could hide either, I mean, you could try, I certainly did, but how well I pulled it off is another question. Granted, people aren’t that observant, but when you know it, good gosh, that’s all you need. You’ll find yourself staring at the mirror with your eyes overlaying every particle that’s misplaced. Oh, that’s off, and that too, you’ll think, watching the reflection you wish would just go away. But it doesn’t go away. Scolio never goes away.
“This isn’t you, scoliosis does not define you.” The words are sweet, true even, but they can’t twist through the smoke. They can be met with a tear and a nod, but nothing that can break through the walls that Scolio has surrounded you in. Because by that point, it does not feel like something to just get over. It doesn’t feel like you can so easily accept the person staring back at you. You want to keep pushing it away until it just disappears, but it never budges, never sways, only tightens its grip instead. It becomes so much more than what you are. You’re no longer a name in the crowd but a walking diagnosis. You’re a prisoner in a messed up body you never asked to have, but when it came down to your control, you shoved it away as if it meant nothing.
So every morning thereafter your decision, you have to wake up to see the trouble you have caused. What you could have prevented, had you only worn that annoying bark. And you still know, deep down, that you could still do something to change it, but because you have already predefined your fate, you know there isn’t a point. You know that you will fail, so again, why bother trying?
But to have these thoughts is a horrendous cycle. All you ever do is go around and around again, never leaving the forest, never taking a step forward, just spinning all day long. You get so wrapped up in having Scolio, of being Scolio, that all other connections to the outside world falter and fall to the ground. Then it’s as if Scolio is all you have, all you are, and there’s no way out.
And Scolio isn’t even a temporary problem, not that I believe, at least. You don’t just wake up one day with the blessed straight spine that other people do not even think twice for having. You do not just turn around and all of a sudden get better. It takes baby steps: to heal, to change, to forgive and to move on. But Scolio is always there, alongside you, tapping you on the shoulder. Scolio can be gagged, but never silenced. Scolio can be fused, but never straight. Scolio can be healed, but never forgotten. Scolio can be moved on from, but it will always be there, waiting, watching, and waving from the edge of the forest.
And while that may sound awful, it really isn’t. Because while Scolio may be attached to the forest, I no longer am. And because of this, I can now look at Scolio positively, lightly, hopefully and from a voice that has been through the darkness but now appreciates that darkness for what it was: experience.
Of course, such a drastic change didn’t occur all at once. But it arrived in baby steps. Part of it came when I had a spinal fusion at seventeen. Another came when I realized my fifteen year old self wasn’t the same self I was at present. Yet another came as I committed to a new brace, even if different, and instead had the opposite problem of wearing it a little too much. But I didn’t want to get myself back into the previous situation. And, in a way, minus the scratches I couldn’t itch, and the trouble of getting pants over it, and the uncomfortable factor, it wasn’t so bad. At the end of four months, I even found it hard to let go of, not just out of plastic, but out of the whole ordeal and experience. I wanted to hold on for as long as I could, but it had gotten time to say goodbye.
And on a larger scale, at a year after surgery, everything itself came to a close. I found myself packing away my things in the middle of the forest, of being ready to move on and to not have any attachment left to the abyss, other than a thin, thin slice of string.
But, you won’t ever hear me calling my experience a mistake. I mean, it wasn’t the smartest or the best decision by far, but it wasn’t a mistake. Some crooked, uneven lines, just aren’t mistakes. Scolio itself, is not a mistake. That special apple may still be out there, somewhere between the stars, waiting to be grasped. But you won’t ever find me searching for it. I don’t need that apple anymore. I’m wonderfully okay with my bruised apple and it’s the best apple as far as I’m concerned.
Scolio may be a challenge, Scolio may be a pain, but without it, I wouldn’t be me. So the universe can keep its golden apples and straight spines, because I’m no longer interested in either of those. Scolio may always be tapping me on the shoulder, but until I get annoyed by it, I won’t mind. And as far as I believe, the reason you cannot fix a Scolio is not because it cannot be fixed, but because there’s nothing there to fix.