Invisible Illness: Scoliosis Awareness

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.

every_day_is_a_battle_ - Scoliosis post

“Every day is a battle” from March 2011

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:

05-4_Overall_Spine

Image from Google.

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
     The shoreline,
      Laughing and
          Cheering, with
             Smiles on
               Their faces —
                   Their bikinis
                    Are on fit and
                    Snug
                    My eyes follow
                  The way their
               Body moves,
           How each
        Vertebrae
       Aligns so well,
    How their hips
  Move from side to side
Skin flawless,
No scratches
Or scars
To be seen
Just perfect
It’s like they’re
Taunting me,
  Though I know
    They aren’t,
      Showing off what
        I can never possess
          Uplifting the emotion
             Inside of me that
                 Grumbles how
                   I should have it,
                    That it’s what I’m
                      Supposed to be,
                      It’s a sticky,
                     Black liquid
                   That just desires
                  So desperately to
               Consume me —
             I wish I could
           Shake it off,
           To rip its grasp
           From me,
           But it always
           Finds a way of
            Coming back…
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.

Change 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,
Pointing…
Mocking

And that same emotion,
Grips me again,
And I’m struggling between
The monster,
The demons,
Inside and the ones
That stare back at me
Through the mirror

I am afraid,
So, so afraid

What will happen?
Friday?
Next week?
Next month?
After that?

I’m afraid that I will lose…
…again

That I will lose myself
To…me

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
Past demons?

Or will they still be there?
Staring at me?
Laughing at me?
Mocking me?

Will they always be there?
Will I always be their slave?

I don’t want to,
I can’t

But I don’t think I’m
Strong enough,
Smart enough,
Willing enough
To go down the other
Path

If I did it once,
That means I can do it again,
No matter how much it will
Break me,
Shatter me,
Kick me

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:

 

slip__fall__get_up_again_by_h_everybody_lies__md-d45gr0h

And then I got my surgery: T12 – L2.

I got some of the pre-op and post-op pictures:

pre_op_scolio_by_h_everybody_lies__md-d499l8eAnd this photo shows the way my hip was off and therefore I was off into another realm:

before_by_h_everybody_lies__md-d4rt7l6

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 ^^;

my_old_pal_by_h_everybody_lies__md-d4a5pyr

bandaged_by_h_everybody_lies__md-d4a5num

Bandage art! Woot!

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:

february___scolio___2012_by_h_everybody_lies__md-d4x0itk

Here’s what my hip looked like after the surgery:

after_by_h_everybody_lies__md-d4x0g1t

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:

fuck_yeah__i_m_pre_med_by_h_everybody_lies__md-d5m42as

This was early on in the healing process:

battle_scar_by_h_everybody_lies__md-d4ko6ob

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.

i_am_by_h_everybody_lies__md-d4o1s4t

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
Splayed across
This paperThings have
Changed so much
Since then,
That now
They can
Be addressed

I am no longer
A monster.

I am no longer
Hiding.

I am
Not afraid.

I did not
Lose myself,
If anything
I gained a
Part of myself
That only
Time and change
Can bring you

I’ve learned
A lot.

I am no longer
Ashamed.

I am no longer
In the rut.

I am no longer
Stuck in the past.

I am
Strong enough,
Determined enough,
Proud enough,
Willing enough,
Hopeful enough,
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 past,
My Scolio,
My mistakes —
Do not
Define me.

I am more
Than them.

I have found
Acceptance,
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
Mean
I cannot do them
In the future

I am me,
I am free.

And most importantly,
I  am
Beautiful in
All my asymmetries

And better yet,

I am okay.

=)

I went on to actually do some scoliosis inspired drawings throughout the years. See below!!

vulnerable_by_h_everybody_lies__md-d54z8nwspinal_love_by_h_everybody_lies__md-d54xl5mhealed_by_h_everybody_lies__md-d56voab

what_can_never_be____________by_h_everybody_lies__md-d571q7fthrough_the_wreckage_by_h_everybody_lies__md-d56vsxc

progression_by_h_everybody_lies__md-d5qoy1b

I also used more photography:

you_re_still_beautiful_by_h_everybody_lies__md-d6psqhg

“Still Beautiful”

underneath_it_all__by_h_everybody_lies__md-d5r2uun

 

this_is_medicine_by_h_everybody_lies__md-d5hchg2

Concept of the “Golden Apple”

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 [:cough: doctors :cough:] 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]

a_life_that_s_awfully_rotten_by_h_everybody_lies__md-d75maie

“A Life that’s Awfully Rotten”

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.

______i_n_s_i_d_e_______by_h_everybody_lies__md-d5z1nvz

 

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.

PHEW! So, uh, that’s my story! Maybe the golden apple concept explains why I don’t search for a fix all cure all for Recovery from mental health issues today. I don’t know. But I like being OPEN about my stuff nowadays. I’m SO over those scolio days. I’ve shut the book on that, and have moved on! WOOT! 🙂
I hope you enjoyed this read and all the PRETTY PICTURES! 🙂
Stay safe, peeps!!!

 

Living with Severe OCD | Book Review

Living with Severe Obsessive Compulsive Disorder by Marie Gius


PLOT LINE / ABOUT THE BOOK:

Taken from my notes in my blogging journal:

In this book, Marie Gius tells her whole life story. In a way, I can see how this rounds her out as a person–someone beyond a mental health issue, however I also feel it’s rather unnecessary and had me questioning its significance multiple times. I think it lays out the foundation of how she struggles before she attempted suicide, yet I feel it was rushed after that revealing truth.

Granted, she does have a lot of ground to cover, from her teenage years to her early fifties. I also would recommend this book to an OCD sufferer who is a teacher, however I’d advise not to read beyond the point where Marie tries to kill herself. There are distorted thoughts after that point that I don’t believe are conducive to anyone’s Recovery process and I think Marie would have a different perspective of it now, a decade later than she did when writing the book. I found those parts to be particularly triggering myself (which is a good exposure) but so much so that I’m muddled in my recommendation score.

She doesn’t focus much on the Recovery process, however this is how she defines her own Recovery journey. She doesn’t believe she can recover or be cured from her OCD and so if you’re looking for a book to inspire you to motivate yourself in Recovery, this is not the book for you.

Her aim is merely to tell her story, in all of its mistakes and truths. At least in that, she did a fine job. I do congratulate her on that courage, especially since she struggled with being open about her condition for many years. I still find it difficult to respect her definitions of Recovery, but maybe it is a work in progress for me to do that, as well.


RECOMMENDATION SCORE:

3/5 obsessive compulsives.

If you’re an OCD sufferer and also a teacher, I’d recommend reading her story in this book, but don’t be looking for much inspiration, rather just learning about another’s experience and how they managed through it. So, if you’d like to learn about OCD and don’t have it, or have OCD and want to learn about another’s journey with it, then I do recommend this book. 🙂


QUOTES & MY THOUGHTS:

  1. “I was shocked she knew about my illness, but again, I think many people found out after I tried to ‘commit’ suicide in June 2000” – p. viii

There’s no actual quotes around ‘commit’ in the book, but that’s just my insertion into it :3 It makes me cringe whenever I hear the term ‘crazy’ ‘insane’ and other stigmatizing comments like that just flung around carelessly by people, apparently in books and in real life and any other source. It just leaves a bad taste in my mouth. Same with someone who mistakenly says a “successful” suicide, it’s like, “Ouch, no, you mean completed suicide” or “died by suicide” or “lost their life to suicide”. There’s an interesting TED talk about these word choices and suicidality here:

In addition, when I read this part of the prologue, I was surprised and unfortunately I found that it made her story, as little had been mentioned thus far, more … serious or impactful for me. 😦 In the sense that I’m sad it got so horrible to deal with for her and that it also just packs more of a punch when it gets ‘that bad’ too. 😦 Hope that makes sense!

2. “For decades, I have wanted to share my story. I feel such relief now releasing what I have had to hold inside” – p. ix

This is just to show how her main objective in this book (published in 2006) was to tell her story, in all of its intricacies and complexities. As I said above, it’s not much of an inspirational Recovery centered book, but rather what treatment she had over the course of her lifetime and how her condition worsened as she grew older.

3. “Great Spirit, grant that I may not criticize my neighbor until I have walked a mile in his moccasins” – p. xiii

She refers to this anonymous quote before the start of Chapter 1. It is a nice quote, hence why I’ve included it within this list, and I think it’s also especially good for me to keep in mind as I often struggle with this when it comes to learning about others’ OCD stories and Recovery journeys and attempting to RESPECT them in their uniqueness and vulnerability. *sigh* I am still my own work in progress.

It also reminds me of that post I deleted about one person’s OCD journey that caused a roaring reaction within my soul. I can understand now more of her journey from what I’ve read and learned from this book. That’s a solace, at least!

4. “My behavior is compulsive and irrational because I don’t have control over how I react to situations that bother me. At least, I don’t feel as if I am in control of my actions” – p. 1

This first sentence had really spiked me on the wrong foot, but I relaxed again once I read the following statement.

FEELING like you don’t have control over your actions and NOT having control over your actions are two VERY different things. I’m not just being nit picky. That difference MATTERS. I’m sure there are exceptions to this concept, ones you may be able to point out to me better than I can try and think of them off the top of my head, however, if there are few things we do control in our world, it’s OUR ACTIONS.

We ALWAYS have a choice. That choice may be minuscule or on a microscopic level, yet it is STILL a choice. Lying to yourself that you don’t have a choice can be damaging and put you backwards further in your Recovery, to the point of regression or relapse.

I think it’s very critical to realize, recognize and be aware of the power we have of our choices and actions. To believe I don’t have a choice for instance, means I’d just go off acting on the OCD thoughts without any regard to my Recovery process. And that is NOT how my Recovery works at all. I may still have the OCD thoughts about harming myself, however it is my CHOICE whether I stay on the road to Recovery or if I veer off course. That doesn’t mean I’m ALWAYS choosing Recovery, sometimes I don’t, and that’s just life and how shit goes sometimes. And really, that’s okay. Unless I’m dead, than it’s not. ^^;

I just feel this is a very important issue. It reminds me of idranktheseawater’s video about her revised edition of Lady Injury where she recognizes that she did have a choice in regards to her previous history of self-injury:

5. “No one really understood what was going on inside me. There was no one I could talk to who could help me” – p. 18

I’m including this quote because I think there are people who have struggled with any mental health issue or non-mental health issue who have felt alone and that they didn’t have someone in their life to help them through it or that could understandably wrap their minds around what was going on with them. So, this is for any of you out there, to remind you that you are not alone. And, if you ever need someone to chat with, my blog is always open. ❤ ❤ ❤

Sometimes just being heard means the world.

6. “At last I had a name to describe my problem… I was determined to learn everything I could about this mental illness” – p. 20-21

The neat thing about this bit is that she was also diagnosed by her university’s counseling center! Also, I hope it’s obvious that her treatment went back into the 1980’s, so some of the discrepancies in her book make sense.

I do want to point out here, as well in a few other places, that researching or learning all you can about OCD in particular, can actually be a form of reassurance seeking. When I was first diagnosed, I read a TON about OCD and self-harm/suicide obsessions and the differences between them and suicidal thoughts, and I continued this behavior into the new year when I was researching suicide prevention tips and everything. For me, it was a part of my compulsive behavior because I was fixating on the issue, giving it more importance than necessary, and finding out if I was dealing with OCD vs actual suicidal thoughts gave me some reassurance that it was OCD…only for me to doubt it again, research it, and so on and so forth. I also had some crisis appointments I made in the fall semester where I was also reassurance seeking as well.

So, just be careful (god that sounds so OCD lol) what your MOTIVATIONS are behind the action. Reassurance seeking has always been the slimiest behavior for me to understand and specifically determine.

7. “Keep telling yourself that the toilet is clean and it doesn’t need  any paper on it” – p. 25

This is a questionable response to dealing with OCD that she was told to introduce into her life. I think it’d be more accurate instead of reassuring herself that it’s clean, to admit that there’s the POSSIBILITY that it IS NOT clean and that that discomfort is something she has to grow more accustomed to.

8. “When I would drink beer my OCD wouldn’t bother me. I could act in a way I considered normal and have a good time. But it was really hard for me to deal with my OCD when I was sober again” – p. 32

I think this is important to highlight because it shows how substance abuse and OCD can play a role together, hand-in-hand. Also, whenever going to treatment programs, at least here in MA, one is often told they have to be sober from any drugs/alcohol, to be able to receive treatment. I know this is especially the case at the OCD Institute, at it can run amuck with the treatment you’re receiving to handle your OCD. Probably one of the main reasons I’m going to stay away from alcohol in my life. No, thank you, let’s move it along now, shall we? 😉

9. “You’ve progressed more than you think. To be able to talk about your OCD and be willing to go through steps to help yourself takes a lot of effort and courage” – p. 36

This quote is what I’d like to refer to as a #TMtruth (TM = treatment, my shorthand). This was something the psychologist had told Marie early on in her treatment at college, and I felt that it’s important and true and good to mention on here as well. ❤ This is also true for other mental health issues, too. 🙂

10. “Different situations and people started bothering me more and more; I could hardly function. I would avoid walking up and down the aisles of students because I didn’t want to become contaminated  by someone who wasn’t wearing clean clothes” – p. 59

This shows the depth of Marie’s OCD and how it was affecting her deeply and troublesomely.

11. “…Knowing that I never would be cured or completely free of my problem. I asked myself a question that had been haunting me for years. Did I really want to get better? OCD provided a perfect excuse for me not to do anything I didn’t want to do” – p. 63

#TMtruth. Recovery is a hard road to go on, even if it’s the most rewarding. Not having to be so hunkered down by the OCD or other mental health issue, having hard days but more often having better days, shedding yourself from the gunk that is mental health issues… that’s what Recovery can offer us, one moment at a time.

Recovery is not a cure all dream. At least, I don’t define it as such, which gives me the hope and inspiration to want myself to get better, not to be rid or “cured” from the OCD, but to just manage living with it in a positive and effective manner. That’s my goal. Anything higher than that might be idealistic and delusional.

I think because Marie had trouble defining her Recovery process in such a way, feeling it was an all or nothing task, she wasn’t able to get enough out of her treatment process with such a dim light ahead of her.

Also, it’s so common and a unity moment that we all wonder if we can recover, if we want to and if it’s something we can truly manage. My answer? YES! Listen to your true self, what your values are and head in line with them! You may not believe you can recover, however there are people in your life (or who will be in your life) who will encourage you and believe in you until you’re ready to start believing in you, too. ❤ ❤ ❤

12. “If you’re going to get better, you’ll have to force yourself to do activities you want to avoid” – p. 67

#TMtruth for our other OCD fighters out there!!! Remember Robert Frost: “The best way out is always through”

13. “‘Here in this world. I wish I were dead so I wouldn’t have to deal with any of this anymore. I’m so tired of living with OCD day after day'” – p. 69

Living with OCD, or any other condition, IS tiring day by day. However, I think if someone had further addressed this confession of Marie’s early on, she may not have gone on years later to act on these thoughts, in her blinding desperation to feel heard, understood, and to communicate the pain she was going through.

If someone you know is expressing suicidal ideation, please ask them more about it. Don’t shy away from the topic. Learn what to ask and how you can best respond to help them, and get them the help they need. ❤ It can make all the difference.

14. “After lunch, I took a nap. Sleep was the only time I could get away from OCD” – p. 71

I can understand this behavior, I sometimes engage in it myself to this day. However, it’s important to note that behavior like this to get away from the OCD can be avoidance and in that, is a compulsion. So again, tread lightly.

15. “But you’ve got to force yourself to go through these steps if you want to get better. How are you supposed to cope with situations if you don’t expose yourself to them?” – p. 76

#TMtruth!

16. “Those 2 weeks in the hospital seemed hardly to have helped me in coping in the real world. Just as I had told Dr. Montgomery, I went back to my old ways once I was home” – p. 77

*Insert facepalm here. Insert facepalm here*

17. “I was very emotional and needed the support of my family as there was no special person in my life to help me with my OCD. If my principal had fired me I think I would have ‘committed’ suicide as teaching was my life” – p. 80

I quote this part because I recall in a Philosophy class once we spoke about how, as humans, we tend to have the inability to imagine ourselves going through and SURVIVING terrible situations. We either underestimate our strength or overestimate the pain, however, when put through the situation, we wind up keeping it together better than we thought we would. That’s what this reminded me of.

18. “I was told to practice my tension reducing techniques, but I wasn’t diligent with my efforts” – p. 80

I get that Recovery and treatment are no easy endeavors, but this part made me a little annoyed because I just felt like, well, what would you expect? If you’re not an active member of your own treatment, it’s likely that doing nothing isn’t going to help you.

Yes, we all slip up and make mistakes. But if it’s an ongoing problem, then it’s our decision when to start looking for solutions to it rather than continuing with the problematic behavior.

19. “Normal? I don’t think so, but they keep reassuring me that there is no such thing as normal and I only have a disorder” – p. 82

I think this concept could be borderline reassurance seeking. See my comments from above for more. (We’ve got nearly 18 more to go… O_O DX GAH)

20. “Killing myself seemed like a good idea” – p. 84

It always does, and it never is. -_-

21. “The last statement about hiding my OCD is very accurate. I have learned many ways to cover up when something is bothering me” – p. 89

This reminds me of the idea of hiding your mental illness from Fuck Feelings by Michael and Sarah Bennett, and how that’s often not helpful for either you (the sufferer) or the people around you because they will often become upset and angry at themselves and feel at a loss for how to help you if you don’t open up to them about it. So, in fact, trying to hide it can be more damaging. At least, that’s what I recall from the book, check out the book review about it for more of my thoughts on it! 😉 Shameless self-promotion 😀

22. “I would remind myself that anger, like any other emotion, is something a person cannot control. What humans can control is how they react to anger or any other emotion” – p. 91

#TMtruth

23. “‘The way I stop worrying is to do my best and accept what comes and know it will all work out in the end. Your thoughts on depression are very real and a lot of people experience it. It’s hard to overcome sometimes. We all need meaning and a purpose to survive. There is meaning and purpose to your life. You are part of the web of life. We are all interconnected and all are needed and useful. The difficulty is in recognizing how needed you are…So keep going; you can conquer anything if you want to‘” – p. 95

Some powerful words Marie was given from a friend. I thought they were too good to not include, as they can reach out to many from her story. ❤

24. “Just like living with Leslie, being around others was good for support, but the group also reinforced each other with more negative habits and ideas” – p. 110

I’ve heard this concept before from someone, that people who suffer with OCD can pick up the obsessions or compulsions of each other. I don’t know how much truth is involved or if there are studies about it, but I thought I’d include it as it’s interesting.

Phew, we’re getting there, peeps, we’re getting there.

25. “This whole process was extremely stressful, not just to my body but also to my mind. I would continuously replay what quantity of food I ate, and it made me nervous to monitor my food intake. It is very common for people with OCD to control their bodies because they feel they cannot control their minds. I had power because I could decide what I would and would not eat” – p. 121

This is the part where I can now better understand how some people with OCD develop secondary eating disorders. It reminds me of a few stories that I know of where this has happened, and it clears up some discrepancies I once had.

I also feel the power play reminds me of myself whenever I talk about that ‘negative power’. That’s interesting.

God, my laptop is ON FIRE. D:

26. “People with OCD need constant reassurance from loved ones that events in their lives are acceptable to live with” – p. 141

NO. That is another form of reassurance seeking, which is a compulsion which means one is engaging family members in the act of enabling the OCD and only making it stronger and worse for the sufferer in the long term.

This Youtuber is pretty great who talks about his experience and journey in Recovery from Harm OCD:

Mark Freeman

27. “…Suggested I use a nasal CPAP to control my breathing, but I did not want to use anything unless I had no choice. I still have problems sleeping, but I am able to continue functioning” – p. 143

Some of us peeps out there are rigid in what we allow or don’t allow ourselves to use or have. Just like some people think that going on medications is unnecessary or “bad”, some people will see the aid for what it is: an aid. Even so, I just included this bit as it shows how treatment resistant (for better or worse) Marie was in all aspects of her life, not just with the OCD. Maybe continuing to function even if it’s with some impairment is how she wants to live her life. *shrug* Just something to point out. *cough I’m criticizing *cough*

28. “I was tired of the day to day routine of living. I wanted to crawl into a fetal position and forget the world even existed” – p. 145

It tends to sound nicer than it is though. What’s better is to face whatever difficulty is impeding upon your progress and punch it back in the face as you gather up your strength and courage to face another day as another victory. We all have tough days, with and without illness, and it’s important how you make it through those tough days that really counts. Be aware of your victories.

29. “I didn’t realize I need consistency to take the proper dosage of my medications to remain stable. I thought I was doing better, but I wasn’t thinking properly” – p. 162

Remember: Do NOT stop using your medications without first consulting your doctor!!!

When it came to Marie’s suicide attempt, I found that Recovery Raquel could understand it and relate to it with anger and shock, since it would have been better for her to have gone to the ER beFORE she acted on the thought. However, her attempt, like ANY suicide attempt, is very serious. I’m glad, although she wasn’t all that willing, she got some of the help she needed. OCD has a different opinion, but fuck that, that’s not important!

30. “I had been unstable when I had seen him, but I have learned over the years how to be a great actress. I had agreed to start seeing him on a regular basis. And I had assured him I was doing well. I was not.” – p. 166

It’s very important, crucial and critical for us to be honest to our treatment providers as we are going through hard times, especially if we are aware that we are vulnerable to acting on self-harm or suicidal thoughts. It will not only cause undue pain onto yourself but the people you depend on or who depend on you likely won’t be happy either. That’s not to guilt trip anyone. That’s just the truth.

I’ve always felt in my journey that the second hardest thing to do was to tell someone and ask for help. The first was to choose to live.

If you find it difficult or near impossible to say it to your treatment provider, write a document or a blog post and use that when you go in next to speak to them. Keeping your suicidality to yourself only lets the idea sink further into your brain and makes it more likely that you’ll act on it. Remember, there are hotlines you can reach out to. If you need me, you can reach out to me, too. ❤

31. “How dare the medical system – anyone – force me to stay where I did not want to remain” – p. 166

Yeah, so Marie wasn’t all that cheerful for getting in the hospital that time. However, it makes me more grateful to myself that I’d been so open to hospital help in my past!! True, some things and some people annoyed me, but as long as I didn’t punch them or myself in the face it was a fine time.

32. “My family was concerned about my safety and how my OCD was affecting me” – p. 170

#relatable 🙂

33. “I was on a constant merry-go-round without the choice of ever slowing down or escaping. Was there any way to get out of this chaos called OCD? The “only” way to get rid of all the agony, hate, pity and sorrow was by ending my life. I had reached the point where I had [retracted]. I knew it was the ‘cowardly’ way to deal with my problem, but I didn’t care anymore. I just wanted to stop feeling anything, and I didn’t want to live another minute where I would be so concerned about keeping clean” – p. 170

Remember, “only’s” and “just’s” and “not that bad’s” are all suicidal ideation talking. They are not true depictions of reality and what potential and strength you have within you to get through another day.

Think of a time when you’ve gone shopping. Have you noticed how many different designs there are for socks? Different lengths, different polka dots, stripes, themes. There’s different color schemes and sayings and toe socks. There’s such a VARIETY of cereals and food and stationary and beads and artwork. The point is, just as you have many OPTIONS in shopping, you have many OPTIONS in life too.

Suicide ends the possibility of life ever getting better. To be alive is to experience this world once and once only. At least once as who you are today, that is. When you’re in that struggle between living another day and ending your life all together, make sure you have a safety plan before you get into that crisis. Write out who and where you can contact people, help lines, ER’s. Write out what you can do to push off your acting on those harmful thoughts. Remember that this feeling will pass. That feelings are temporary.

Find some music you relate to, preferably positive and hopeful, and use those messages to guide your way through your journey into the light.

I can’t promise you that the thoughts will ever go away, that the urges will disappear, however I can say it’s rather likely that you’ll get better. And if you are the few who find it still is difficult to live, try another treatment program, try another treatment method. Try to accept what you were born to deal with, and make the most out of your good days, as best as you can.

More of us will get better than not. But if you die today, you’ll never get to experience the good in life again. And that’s the truth.

34. “I had not practiced with [retracted] for three years, I did not know what I did wrong. I don’t want to know what I did wrong because I hope I will never want to kill myself again” – p. 172

Hoping suicidal ideation won’t come up again could be a death trap, literally. It’s better to plan out solutions you can employ if they do come back again, like a safety plan, a guideline of coping strategies, etc. Don’t just blindly hope, put the work in to make it more difficult for yourself to act on your thoughts.

The more time you give yourself to think through what your actions are, the better. So lock up your medications or have someone hand them out to you, put other things under locks, or remove access to things that you feel a part of you would love to act on. Make it more difficult. Choose Recovery.

35. “You are the kindest and most genuine person I have met. You have had a positive impact on so many people by what you say and how you live. Our time in this world is limited. This world will be a lonelier place without you. There are people you have yet to meet and who will be blessed by your friendship and company” – p. 176

Another something someone had wrote to her. Again, I think it is sweet and applies well beyond her single life, too. PASS IT ON! ❤

36. “Sometimes a crisis is the ‘only’ way to get a message through. My attempted suicide let those close to me as well as my medical advisers know how serious I felt about my situation” – p. 176

I wish it were NOT true, and I guess that some TIMES it’s not will have to be enough for me. I think that sucks, having to resort to such a terrible, risky action before other people start waking up and recognizing how badly things are affecting you. Again, I wonder how things may have been different for her if this was addressed earlier on…

 

ANY WHO!!!!!!

THAT IS ALL FOR THIS BOOK REVIEW! I AM GOING TO NOW CONSUME ICE CREAM BECAUSE I DESERVE IT. LOL THE NEXT BOOK I AM READING IS:

Do it Now, how to break the procrastination habit

ALSO YOU BEST BE READING THIS, IT TOOK ME ALL DAY TO DO. lmao Just kidding, it did take me all day to do D: