So here’s something that people who only know me for photography-related reasons probably don’t know. I’ve had M.E. for 9 years. When I was running a business, I didn’t exactly want to talk too openly about having a debilitating incurable illness because while a lot of people wouldn’t have felt differently about my work because of it, there was always a chance that potential clients would choose not to hire a sick person. I’m not saying I’m ok with that or that it wouldn’t have been more courageous of me to be an activist at the risk of my own ability to pay my rent, but it is what it is. Or it was what it was.
The other reason I didn’t really talk or post online much about being ill in the same places as I talked and posted about photography was that it felt pretty awesome to have this whole area of my existence that I could choose to keep separate from the medical condition that made the rest of my life so utterly difficult and painful. I wanted people to see an artistic person, a creative person, a business person, a hard-working, determined, strong person…not a sick person. And to be honest, if you saw me at a photoshoot with my cotton candy hair and high heeled shoes and piercings and tattoos and smiles, you wouldn’t see a sick person unless you knew me REALLY well.
The danger of creating a facade of ok-ness is that when you tell people the truth, they assume that you’re exaggerating or lying or delusional. Following moments of openness, I have been accused of being all those things because it is just so hard to equate the appearance of a well person with the reality of a sick or disabled (I don’t really like either of those words) person. So I kept my mouth shut. The problem is, the longer the business ran for, the busier and more demanding it got and the less able to physically cope with work I became. It’s never good when the thing that pays the bills is also the thing that completely destroys you. Things went from bad to worse to rock bottom to bad to rock bottom again, in an unsustainable cycle.
On the days when I wasn’t working, I usually couldn’t do much of anything. ‘Anything’ included standing up, walking, feeding myself, showering, getting dressed and numerous other things that I’d spent the first 24 years of my life taking for granted. It became obvious that the only realistic thing to do was to find a means of paying the bills that wasn’t as physically strenuous and just enjoy photography as a hobby without the pressure of it being what I needed to do to earn money. So that’s what I did in March 2012. It broke my heart into a million pieces. I was able to gather up some of those pieces and stick them back together but some fell through the cracks and into dark places. Those pieces are lost. But we all lose pieces of ourselves and we replace them with new pieces that we find or build or are given with love. Broken things do not stop being beautiful.
Even still, I couldn’t bring myself to talk openly in photography-places about my reasons for no longer running a business. It felt like an excuse, like a failing, like something that people wouldn’t believe or wouldn’t understand. It was something that I didn’t want to have to deal with because it straight up hurt like hell to have no option but to let go of something that I’d worked so incredibly hard to build. It has taken me almost two years to really come to terms with the way things are and to embrace my experience as an artist without that experience being tied to external achievement and success.
My illness is the reason I became a photographer in the first place. I had to leave my previous job because employment on someone else’s terms became impossible, so I went back to college to study photography and then worked for myself because it was the only way I could work at all at that time. The process of grieving that accompanies an all-encompassing medical condition for which there is no cure has inspired so much of my art over the years and I truly would not be the person I am or have done the things I’ve done without it. It is part of me and cannot be separated from who I am today.
You probably don’t come to this blog to read about the details of my life and I promise this post isn’t the beginning of a dramatic change of direction. It’s just something I needed to say, something I needed to put out there. It is the whole truth and it is the lens through which I see the world. Being in pain all the time gives you an different perspective. It creates an intensity and makes you see and feel everything more sharply and more deeply. I would sell my soul to be without pain and to have pre-illness levels of energy, but since I’m stuck with this stuff, I can accept it because I can use it and channel it into something meaningful.
There are positive things about being an artist without a business. For a start, I never have to take a photograph that I don’t want to take. That’s pretty amazing. I’m also enjoying experimenting with tools that I would never use in a professional context. Right now, I’m totally getting into taking and editing photos with my phone because why the hell not? I can’t carry my dSLR around with me all the time, neither would I want to. There’s a freedom in creating images which don’t have to be scrutinised at 100% magnification, printed at high resolution or perfected to someone else’s exacting standards.
As part of my process of falling in love with art-for-art’s-sake again, I’m going to start sharing more of my droidography (I’m an Android geek, deal with it) here, and in other online places, over the coming year. If you have a problem with that or you don’t think that ‘real’ art can be made with anything other than the most expensive and high-end equipment, you are welcome to unsubscribe, unwatch, unfollow, whatever. If you get a kick out of what I do, with whatever tools I choose to use at any given time, and want to stick around…awesome. Glad to have you here. Watch this space.
May 2014 bring you inspiration, acceptance, truth and a wealth of experience and wonder.
All the photos in this post were shot and edited with my Samsung Galaxy S3. I’ll be posting more photos-as-they-happen primarily on Facebook and Twitter, but also on deviantART, Google+ and Tumblr. If you don’t object to artistic images being interspersed with snapshots of cats, make-up and nail polish, you can also find me as DecemberBliss on Instagram. If you want to read more about my experience of living with M.E., I keep a blog about it at Momentary Solutions.