Joshua Tree, 2011. I'm not sure I've ever publicly shared these pictures, most likely not because they show my braces. Here I am in 2011 still walking with the assistance of a cane and leg braces while on the cusp of going into a wheelchair. This chair was a loaner from a company as I adjusted to the idea of becoming a full-time wheelchair user. Today, I can no longer stand.

When I was young I was different and I hated it. Throughout my life I never wanted to stand out and preferred to blend into the crowd. Like many adolescent girls struggling with identity and awkwardness, I didn't exactly project confidence or at least I hid my insecurities well. 

Being different would extend into my adulthood and intensify times a hundred as a result of my disability transpired by a rare and progressive muscle-wasting disease called HIBM, today known as GNE Myopathy.

To steady my wobbly legs I began using leg braces in 2001. I hated it. I did everything to hide them and only wore pants. Fortunately, today leg braces are slimmer and cooler looking but back in the day my options of leg braces were big clunky pieces of milky white plastic. My attire and shoe choices were limited. Due to the braces’ wideness I could only find an ugly pair of sandals I wore for some nine years. I didn’t feel feminine. I didn't feel attractive and I wouldn’t dare let anyone see my braces, making sure to only remove them in private.

I hated my progressive limp. If I was in my car I would wait to get out when no one else was around, especially if a cute guy was in sight. Getting out of the car was a concentrated and orchestrated juggling event. It felt as if I was dragging a dead body out of my car, but I would have to pretend the difficulty away and not show it bothered me. But it did.

There was and is nothing physically graceful, light or airy about me. My legs feel heavy, like a pile of bricks constantly stacking on top of each other. Back then my limbs felt increasingly lifeless as I forced dragged them along like some unwitting hostage. As I progressed I felt like dead weight. I often envisioned my barren body as a hill with gravestones erecting from it.

Suddenly not being in control of my body made me feel...lost. How do I get on with this new found stranger that is my body? How can I be confident?

I remember what it once felt like to move effortlessly. The sexy ease of lifting a limb that ended with a pointed shoe as the underside of my calf alluringly brushed over my left knee prefacing the concealed meeting of both thighs underneath a free flowing skirt. It looked and felt sexy. Back then I had the ability to manipulate my body to project confidence in an unspoken language, but it didn’t necessarily mean I was confident.

Intellectually, I know this “sexy” projection is ridiculous and the ability to cross my legs, arch my back, jump and writhe doesn’t make one self-assured. Wearing the trendiest fashion or carefully picking out my image from hangers and a makeup table does not in any form correctly constitute confidence, femininity or capabilities. 

But still, it was there. Society expects these things and we are graded accordingly. 

All women have this encumbrance and it is our job to dispel all we’ve been told since we were born. But disabled women have an extra layer of society's projections and pressure we must combat daily. We definitely do not fit the sexy package we are sold on TV and in ads. Today that is changing but not even a thing twenty years ago. To the mass we are typically considered non-sexual and while the public is more aware that all people can become disabled, we still view people with disabilities as objects of care — perhaps confined to their homes tucked safely in their bed, void of thoughts and dreams.

And yet, there are many things I can do that the average person cannot but they are not viewed by society as less than or disabled. 

Collectively we tend to place worth on normality, social expectations and group identification rather than the individual form. Society does this to us but we ultimately allow ourselves to be jammed into these bound boxes out of fear of being different. Not just women, but men also.

Whether I was or not, I knew I needed to at least project strong self-confidence to face a world that is often harsh and assuming toward someone like me. But the truth is confidence took a lot of time and hard work. Gaining authentic confidence meant I had to face all my fears and purposely put myself in uncomfortable and even abnormal situations in order to dispel all of society’s rules that had been drilled into my consciousness.

Everything is perception, including our own perspective, and it is a continuous self-workshop in understanding ourselves. And that it is ok.

Through the years I’ve learned to befriend her (my body) and have more empathy for it is not her fault this is happening. She weeps when I weep. 

Discovering you have a debilitating genetic condition at twenty years old can feel like some cosmic out of body experience. Living that relentless loss everyday can feel cruel, grueling and even isolating. You’re in constant reflection, wondering, “Can I handle this for the rest of my life? Am I strong enough to keep going?” 

Sometimes, even I'm not sure. 

With such a strange and colossal life-altering event it is easy to look at everything you can't do. It is easy to abide by the pressures that say you’re not worthwhile. For me that list of what I can’t do gets longer with every day that passes, and it is difficult being told you can't do things that every “normal” person is privileged to do, especially when you’re a dreamer. I've lost so much. I've lost my independence, ability to drive, travel alone, cooking...all the things I held most dearest to my heart. And this list continues to lengthen as it trails behind me like some endless memory lane.

It's hard not to be reminded of the loss when every second it is screaming in your face. Everything I do requires my most dedicated and conscious thought from picking up a pen, typing, holding my phone to scratching. Every moment of every day can feel like Mt Everest, but for everything I've lost, I've gained...I've found...like some deep buried treasure unearthed by a catastrophe. 

My world is constantly being rocked therefore I am in a constant state of (self) discovery and that is exciting.

My condition has forced me to not only deal with the physical complications of accomplishing simple tasks but also truly learning and knowing who I am while accepting my different-ness. It has been a neverending dichotomy of hide-and-seek, lost and found.

Today, I’m no longer projecting confidence. I am confident. With time I care less about what people think. I still have my little insecurities pushed by society and ultimately confirmed by myself, but I see my worth in this current form. Today I no longer employ the use of leg braces or canes. I now use a wheelchair full-time and less able to hide the obvious.

Learning confidence with something like this takes time. It’s about accepting who you are, just as you are. I have learned humans operate beyond boxes and contrived expectations and the sooner we can break free from this, the better off we will be.

It's easy being like everyone else, it's daring to be fine with who you are while molding growth and improvements based on your own standards and not everyone else’s.

I have learned movement and elegance is not exclusive to physical yet it comes from within...within the confines of my mind. A body is just a body, a shell that must be supported by the spirit. Being sexy and confident is a state of mind.

* * *

When difficulty finds us it can make us feel lost. You feel it. But you know deep down in the pit of your stomach you must accept this or else you’ll never survive. 

We can’t expect to have it good all the time. Everything is a cycle — an unending ebb and flow of highs and lows, lost and found, fulfillment and grief, joy and sadness, sweet and spicy, dark and light, pain and joy. A rollercoaster ride we must all endure. This is inevitable for all of us, some more than others. But this too shall pass. And even if it doesn’t, like some life-long debilitating disease, we must bend ourselves out of humility against the force that is life. 

We are all chasing a checklist of how we think we should look…how life should look; the typical path, the typical shape, and when life doesn’t match this imagery we have been sold, we crumble rather than seeing we are originals and therefore our paths are uniquely different. This game is a constant commitment to being found..to finding ourselves in the darkest times.

There is no manual for this but what helps me is not seeing myself the way others see me…or at least how I think they say me. I obviously feel the disability and daily struggle but I don't feel I am abnormal, defective or damaged goods; the assessment I sometimes feel projected through strangers' stares and whispers.

The secret to managing the unexpected twists and turns is to believe we can. We don't need an outside source to do this, it lives within us. All that is required is for us to find ourselves when we become lost in space.

In the face of a storm I have found myself in humor and adventure and have liberated myself in every way, and no one can take that from me. It’s still a work in progress, like it it is for all of us, but I’m far from the girl who used to hide her leg braces.

Thanks to insomnia for this blog post 😉 As always, feel free to share. 

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