Day 24 – My own prompt: What dreams and goals have emerged for you as a consequence of being ill?

“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has opened for us.” – Helen Keller

I became ill some 22 years ago on the eve of what could have been a promising research career in the physical sciences. As depression and Sjogren’s syndrome slowly diverted me from my beautiful career, I became more focussed on survival and less on dreams of earning a place amongst my peers and completing my first big research paper (which I never did quite finish).

Although invisible illness stole those dreams from me, it opened the doors to other dreams. However, as Helen Keller said, I spent a long time looking at those closed doors with sadness and regret. It’s only as I began to explore other ways of being in the world that I began to notice those open doors, and tentatively took my first steps toward them and the dreams that I hold dear now. Surprisingly, many of the dreams and goals I aspire to now have their origins in those I held as a youth.

I began writing ‘for fun’ sometime around my fourteenth birthday. Much to my mother’s chagrin, I chose science fiction as my genre (or rather, it chose me) and for five years I wrote and re-wrote my first novel – an extremely bad and derivative novel – but one that nourished my dream that I would one day be a ‘real’ writer. I was also respected for my art by the teachers at my rather tough suburban high school, although it was clear to them (not to me) that I’d never make it as a realist. One teacher compared my work to that of the German expressionist Blaue Reiter group, and I never knew whether to be pleased or worried about that!

When it came time for me to choose a career, I chose science naturally as I’d absorbed my mother’s very real and practical fears that I’d never make a living as a writer, much less an artist. While I still dreamed in private moments of becoming a novelist, it was a whimsical dream that I never took seriously, and became even more tenuous as I sank into years of clinical depression. Although I was able to pour out stream of consciousness poetry about my wretched illness, the idea of writing an original novel seemed as far-fetched as the possibility that I might one day walk on the moon! As for art, most of the art I created in those years was during a brief stint in a hospital dayroom.

When I finally abandoned my science career in 2005, I was still staring at that closed door, even if my subconscious mind was taking me somewhere else and pulling me along for the ride. I wrote a couple of articles for a local magazine, Synergy. In hindsight, I had begun to lay the groundwork for the path I walk now, but I was staggering in a fog rather than consciously propelled forward. I continued to write blog posts and make art sporadically, very much exploring what depression and Sjogren’s had done to me, rather than any aspirations for what I planned to do with the rest of my life.

Earlier this year, I somehow took on the (for me) radical role of helping my better half to curate a digital art show. For those who don’t know, digital art means artwork created using software on a computer or other digital technology (such as a touch screen). It turned out that the show was a perfect storm of intention, even though I just fell into it. I created a new digital painting (the most ambitious I had attempted to date), and decided to give a talk on how digital art made art accessible to people with disabilities and infirmities.

Preparing for my talk planted the seed of a new dream: sharing how art has enriched my life as a person with disabilities. Although I didn’t realize it at the time, I had found a new dream: synthesizing writing, art and invisible illness into something rich, beautiful and hopeful.

I decided that I wanted to write an e-book sharing something of this journey, and the practical ways that other people with disabilities could also re-open doors to art-making that had been closed due to fatigue, pain and the other constraints of invisible illness. Initially I used the word ‘disabilities’ as I was focussed on limitations, but just a few months later, thanks to projects like WEGO’s ’30 days, 30 posts’ health blog challenge, I am coming to understand that while life with invisible illness is different, it doesn’t have to equate to disability. It doesn’t have to define us.

Not only that, I decided I wanted to tell the stories of other people with invisible illnesses who had likewise stumbled into the world of digital art and photography and found creative freedom from the limits imposed by their illnesses. I managed to showcase a couple of artists’ work beside my own during my talk, and felt energized and excited by the possibilities. People who attended the talk and others that I talked to later seemed equally excited.

Although the show and subsequent challenges have tempered my momentum, my plan is to return to the research and writing of the e-book following the discipline and expected subsequent exhaustion of this month’s health blog challenge. I will also be looking for other digital artists who share my passion and feature some of their stories and work in the e-book, which will be titled appropriately: “Digital Art: Our Stories”.

You might ask, “Why digital art? Why not all art?” While I will explore this topic more thoroughly in the e-book, the brief answer is as follows. I found one of the greatest limitations to creating art (I now paint with acrylics extremely rarely), is the energy involved in the set-up and clean-up, not to mention the energy required and pain caused by leaning over a canvas for long periods. I discovered that by using a digital tablet and ‘pen’ I resolved most of these difficulties, and what’s more, I became more willing to experiment. When you’re using a real canvas or canvas paper, you become aware of the expense involved in producing ‘a colourful mess’ instead of a ‘piece of art’. I’m all in favour of colourful messes, and by removing this restriction, I became more playful and enjoyed the whole art-making process without feeling the necessity for perfection. The beauty of the entire digital art medium is that experiments are only as expensive as the cost of your digital storage!

My great hope for creating this book is to present ideas and explain the tools of the trade to budding artists who face restrictions such as fatigue, pain, being bed-bound and so on, but even more, to help people with invisible illnesses recover the playfulness and mastery that they enjoyed prior to becoming sick.

It’s a project that’s very dear to my heart, and I look forward to sharing updates on the project over the coming months, as well as talking to other digital artists who might like to be featured in the e-book. It’s very much a work-in-progress that is taking form in my foggy brain, but one that I hope will open doors for many others who, like me, spent too much time looking at the closed ones.

Many blessings,
Jane