Now that I’m thousands upon thousands of dollars in debt and my master’s degree hangs on the wall above my desk, I thought it was time to really try and do something with this blog. To write properly. To start a real conversation. It just so happens that the reinvention of this blog/website is the perfect segue into the great reinvention of my Self. I ended up in grad school to begin with when I became unable to work and logged on to the disability rolls after (finally) being diagnosed with a chronic illness: an auto-inflammatory/autoimmune form of spinal arthritis called ankylosing spondylitis (AS). It took 12 years of fighting to get a name for the myriad symptoms I’d actually been plagued with since my mid-20s. You can read a bit more about AS here.
The first element that needed work on this site was the design itself. I wanted something cleaner and easier to navigate that managed to still showcase my photographs, and also displayed my writing appealingly. To tie it all together I wanted a header that included a graphic or piece of art that really encompasses what this blog is about. It was a no brainer to use the piece above–a sideview of a red spine and pelvis next to a white-shadowed figure. It’s a piece I created for an oral history project I did during MA coursework, “Making the Invisible Visible: Women’s Stories of Living With Ankylosing Spondylitis”. You can read that here.
Using a digital copy of my own x-ray, along with a photo cut-out of myself (edited to erase identifying features), combining and subjecting them to further editing, I ended up with an image that speaks to how women are still ignored in regards to this disease specifically and medicine in general. To capture the sacred circle/space of this blog I did a few more edits–overlaying a circle which encompasses the shadow figure and spine/pelvis of the original, and finally placing a photo frame around the whole. I write about process here because the creative process is something I spent a great deal studying and reading about as an undergrad. I’m fascinated about the whys behind artistic expression, and why artists make one choice over another. Reflecting on my own process and decision-making helps me to be a better writer/photographer/creator, and perhaps at least one other person who reads my thoughts might find it interesting as well.
For more months than I’d care to admit the first paragraph of this has sat in draft status. I’ve not written much of anything barring a few short pieces here and there, perhaps edited an in-progress poem and scratched down notes for others. I’ve not become the prodigious writer I thought I would when it comes to output. I only just managed to complete my MA thesis. Most days my brain is surrounded in such a fog, a fog that seeps between the synapses and surrounds them, that I just can’t think clearly enough to string words together in the linear fashion that prose requires. This might be because of the medications I take to try and manage the AS (and concomitant fibromyalgia), or because of the diseases themselves (patients with these illnesses often talk about ‘brain fog’ in writings and interviews). I also struggle with two different forms of anemia (iron-deficiency anemia and anemia of chronic disease) and have noticed that my focus and ability to concentrate suffers even more when my hemoglobin plummets. Perhaps I’ll write about this at another time. Right now, it’s enough to share that along with the other more common symptoms of pain and decreased mobility that result from the AS, my ability to ‘get things done’ is also impacted by my ability/inability to concentrate and stay focused on tasks. When it comes to writing, the prose just suffers. Words swim before my eyes. Poetry can sometimes be a bit easier for me to work on as the blocks of language are smaller, concentrated.
Right now I feel that I am ruled by fear. I have no idea what will become of me, although to be fair no one ever does. Living with chronic illness, however, amplifies the uncertainty. My attempts to find work in the past few months have not been successful. I might have earned a degree from an Ivy League college, but no one wants to take a chance on someone who has been out of work for seven years. Four years of that time I was in graduate school, but that still leaves a three year absence on my resume. I had originally thought that after Dartmouth I would be attending a PhD program in the UK perhaps, where I could continue my research and develop some groundbreaking technique of using art and writing to improve the doctor-patient relationship. Easier said than done. UK funding is very, very slim and rare for a US student. There’s not any programs here in the US that I’m interested in. I feel that I’ve fallen flat, that I’m failing despite my damndest to try and have faith that the mysterious and all-powerful energy that guides the universe will somehow lead me to where and what I’m meant to be and do. I get up each and every day and try regardless. It’s in my DNA and I’m incapable of giving up even when I feel discouraged as I do now.
When I was an undergrad and studying creative process, I came across a term called ‘bricolage’–in terms of art, it simply means creating with whatever is at hand, whatever materials are available. My life feels like that right now. Somehow, out of all these broken, disparate pieces I’m tasked with trying to make a whole again. It could end up ugly, or it could end up beautiful. The Idan Raichel Project has a song called ‘Scraps of Life’, and while it’s sung in Hebrew, I gravitated to it instantly without even knowing what the words meant. When I finally searched for a translation of the lyrics I smiled: somehow the heart always knows.
Scraps of Life – Idan Raichel Project
What is time telling me
It’s all scraps of life
And to live the moment
To begin collecting the shards
Maybe I will get out more
Start to speed up a bit
Start to get along
And make some noise
Maybe a different place
A more exciting place
Start to shake things up
And make them right again