The Backstory

I live with a chronic condition called Hypermobile Ehlers-Danlos syndrome. It isn’t serious, all things considered, but it is relentless. As a child my knees popped out of their sockets all the time  and my ankles bent out like they were made of rubber, causing constant (and often embarrassing) falls. I spent hundreds of afternoons in PT after school fumbling around on balance boards, lying with electrodes stuck to my thighs and lifting sandbags strapped around my ankles. At 13 I had major knee surgery after free floating fragments of bone and cartilage that splintered off my kneecap from repeated dislocations effectively jammed my leg into a permanently bent position. It was bloody and brutal and scary – I spent months learning how to walk again.

A few years later I noticed my neck was unusually sore after dancing at a rock concert. I am now 40 and I haven't spent a single day since then without pain. I know now that because of my genetic makeup my joints are unable to support my skeleton and my muscles - in an attempt to compensate for it- are permanently contracted to keep it all in place. My knees still pop out of their sockets regularly- a dreadful process ensues where they either pop back in on their own accord or have to be jammed back into place at the ER while I am fully conscious and able to feel my bones being manipulated into their sockets.

Hypermobile Ehlers-Danlos syndrome is recognized for causing severe chronic pain that is difficult to control. The condition cannot be identified through diagnostic imaging or standard blood tests, leading to an average delay of 10 to 15 years and consultations with several clinicians before a correct diagnosis is made. During this time, life continues, but everything is done in pain.

This is the first time I’ve ever described what it feels like in detail. My parents, my husband, and less than a handful of close friends know—but that’s it. I mention it occasionally to others, but it’s difficult to convey the depth of this experience when you look and sound completely fine. There are no bumps, lumps, or bleeding wounds to show as proof of how much my body struggles to cope sometimes. I worry that people are going to think I'm prissy or difficult or “attention-seeking". I'm sure some do. I don't blame them.

I used to be proud of my memory and happy to capitalize on my writing skills. My side business in college was churning out other people’s finals and Master’s Degree application essays. Not so anymore. My neck is so unstable that looking down at a book or a computer screen for more than 20-30 mins at a time gets very painful. My hands are sometimes too numb and clumsy to write with a pen so I have to use a keyboard- I dictate everything to my phone and I work remotely.

Pain sharpens your senses- noise, cold, heat, smell and bright lights take on a completely different, darker guise.  When your brain is thus preoccupied it forgets and misses things constantly- add to this the neurological side effects of the multiple treatments I’ve been on, and it results in an often surreal existence. My husband says I asked him to be my boyfriend when we first started dating. I have no memory of doing that. He says I wrote it inside a book and gave it to him- what book? Where were we? When was this?

I’m not always muddled. My brain usually shows up for me when I need it and for that I’m deeply grateful. It’s been a long and convoluted path , but I’ve come to a somewhat peaceful acceptance of the fact that I will have to navigate this life a little differently because of the way my body is built. I tried to push through and keep up, but frankly it just isn't working.

I've been in love with photography since I was a teenager. Writing hurts sometimes, not just physically but mentally. I can't help noticing how I sound occasionally when I'm in the thick of a flare-up: muddled, repetitive, wobbly. I don't have to worry about that when I take pictures. It keeps me sane to build a record of beautiful moments and kind, loving humans. So here it is. Thank you for being here.