Link Disability Magazine Dec 2012

Art and ME

Hi, my name is Shiloh Moore and I’ve struggled with severe ME (Myalgic Encephalomyelitis) and Fibromyalgia Syndrome since I was 10. Its been quite a journey from an active, passionate, energetic girl to being completely bedridden, unable to feed or bathe myself for a year aged 16.

Then, aged 18, I struggled with a manic psychosis for two years. My health improved, but 22 years since the first symptoms, I still struggle with high levels of pain, fatigue and countless symptoms. I still need to lie down 21 to 23 hours per day and need to be careful not to overdo it.

Throughout the years, I have discovered a way of dealing with the emotional trauma by writing and making art when I can. I attended school until I was forced to leave in Year 10, though I was a straight-A student.

Throughout the four-year period to get a diagnosis, plus having to pull out of my beloved school, music and sport, I was traumatised. It felt like my whole world was being taken from me and all I was left with was incredible levels of pain and crazy symptoms. I started writing about it to get my feelings out. While lying down, I made notes in a pad and touch-typed on a laptop.

Soon I started writing poetry. It was cathartic. It expressed my pain and encapsulated my emotional and spiritual yearnings. Once written, the words held the power I was no longer bound to their feelings. I felt released.

When able, I began to paint. Two weeks before my 17th birthday I painted a 3m x 1m collage using symbols of my life so far in three parts firstly, healthy and active, then the devastation of the illness, followed by still being wheelchair-bound, but having accepted life with illness and seizing the day with hope.

Then I had my two-year manic episode. I was used to being articulate and respected, but during the mania, I felt I could not communicate without being waved off as delusional or irrational. My ability and inspiration for painting and writing left me. A period of shock followed and I could not paint or write for four years. I had no words, and no images came to me. I felt dormant.

Aged 22, I finally erupted and wrote about my two-year manic and depressive period. I finished putting together my book of poems and drawings and, in 2004, Stranger in the Moving Chair was self-published chronicling my journey and observations of life. Even though I was still chronically ill, I felt this closed a chapter in my life and I no longer needed to write about it. I simply wanted to live my life. I did not write another poem for six years.

For a long while, I feared art as I associated it with pain. A friend ran an art therapy group and encouraged me to come along. I was terrified and adamant I no longer had it in me. She was convinced otherwise. I went and it brought up feelings I didn’t realise I harboured.

It took six months of determinedly going, scared every session, until finally, one week, something broke through and I did an abstract painting using a squeegee and allowed myself to play. It was fun! Finally the wall holding me back from expressing myself was crumbling and, from then on, I haven’t been able to stop.

Another friend encouraged me to start card-making using different patterned papers. I love assembling the gorgeous papers and sending them on their way.

My passion, though, is to create. I draw realistic line drawings, picturing my life with ME. And I draw and paint animals, dancers, singers, trees, birds, girls whatever inspires me to paint with joy and abandon.

Art gives me purpose and a passion to be as productive as I possibly can. My arms, neck and back always ache and I often cant create and have to be patient until I can. To pace myself, I keep a book of art ideas with little scribbled outlines, so when I am well enough to sit up long enough to create, I can work from them. I do as much art as possible lying down and only do small works as my arms hurt too much to handle large canvases.

I am self-taught as I’m not well enough for study or lessons, so I don’t concentrate on technique. Instead I create with the purpose to express myself and increase my quality of life.