Tag Archives: Ikona Photography

My Body’s Symphony

When you see me you see a picture of health. A young body. Eyes that shine through the pain. Even my doctor says, “So you’re healthy aside from your diagnosis of Ankylosing Spondylitis, so that’s good.” What an ironic statement.

I see a body in the mirror that looks like mine, but this is not my body anymore.  This body now belongs to someone else, it is a stranger’s body.2015-03-28 14.33.58

Look past my face.  Look past my beautiful face to the pain.  Slight outward signs, my physical insecurities, only wait for the trained eye to discover: discolored splotches of skin, a slight hunch, constant readjusting when seated or standing for long periods of time – indirect signs of a disease that causes far more insecurities than the clinical diagnosis on paper can possibly reflect.

Look at ME! Past the click bait, that fancy model pose that got you here. Here, a glimpse inside my twisted fate, my gnarly spine. I’ve got plenty of backbone, thank you, that leaves me in an ironically fragile state. Bone spurs take root and strike a nerve softly like the soft staccato of pianissimo on the baby grande, until my legs give way – the build up of a chord deep within (thudding along, a low F on the bass clef) until an avalanche of sound screams from within my joints. This is my symphony – all my cells screaming (begging), “Finale!” while the inflamed audience – the peanut gallery – screams, “Encore!” It must be raining today the way Beethoven has woven his angry Symphony number 5 in C minor through my body.  Or maybe Dvořák’s Symphony number 9 in E minor. Beautiful pain. Continue reading My Body’s Symphony

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Pain is my fishbowl

Many of us are aware of the U.S. Marine Corps tagline, “Pain is just weakness leaving the body.” There’s also a similar, often-referenced quote by Lance Armstrong:

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.

By these definitions, my body is a tomb of never-ending weakness and I’m in a perpetual state of temporary pain (and in my case it doesn’t matter if I keep fighting or quit, the pain is still right here with me). Don’t believe everything you think, it was created by someone else’s perspective first.

When people freak out about bruises or scrapes on my body I have never understood the reason. What’s the big deal? Only in these aesthetic instances can I spout the “pain is temporary” mantra and people will understand that I’m just good at sucking it up, so to speak, and they leave it at that.  Most people do not understand that there is deeper, unseen pain that can last forever in our temporary bodies.

©2015, Glenn Jones/Ikona Photography H/MUA Ashley Caudron
©2015, Glenn Jones/Ikona Photography
H/MUA Ashley Caudron

Continue reading Pain is my fishbowl

An open letter to healthy people from a former healthy person


Dear healthy people,

Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic immune-mediated inflammatory joint disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

Continue reading An open letter to healthy people from a former healthy person