I often am to be found with a mug of tea, and love nothing better than sharing several pots with friends over the course of a long afternoon’s natter. So having the first of my birthday celebrations as a tea party felt right – and all thanks go to the staff at the Farnham Pottery and the Hobo cafe. (Sadly, planned celebrations with friends and family earlier in the month have had to be postponed due to my ill health – so I have declared my 50th year as a Jubilee year, determined to make lots of small opportunities for different kinds of occasions throughout the months, in the hope this might be more ‘realistic’ and manageable.)
This tea party however, was a ‘big do’ for several reasons. Firstly, I invited all Creative Response Staff, Trustees, Arts workers, Volunteers and Participants to join me to celebrate the charity: a big hurrah for its sheer dogged existence, and all that it does for those of us who need it, is long overdue.
Secondly, it was an occasion jointly planned by the Farnham Pottery and Creative Response to announce the upcoming exhibition of my work in July: Ta Da!
This is my first solo exhibition and features very new work from the most unexpected source. As the blurb above says, in addition to the diagnoses of M.E., clinical depression, Non-Epileptic Attack Disorder, in 2019 the ‘unexplained’ seizures I have experienced over the course of the last thirty years were diagnosed as FND (a Functional Neurological Disorder). Opinions on the causes of these episodes of ‘paralysis’ have differed widely during the last thirty years. I have been told by some medics that ‘it’s all in your head’. Others insist there was an initial trauma in 1990 that is being replayed time and again, others note the similarity some of the seizures have to ‘dissociative’ behaviour, others say they are a rare symptom of M.E. that only 3% of sufferers experience, and are probably caused by abnormal adrenalin function. Eventually all of the experts end up saying to me, ‘you just have to learn how to manage life with them’. And so I have, sometimes having a warning sense that I was feeling ground down, like a clockwork toy running out of energy, to the point of collapse; or I just came to an abrupt stop and without warning lost the use of legs or arms; or in reaction to sudden shock, developed severe muscle muscle spasms which could last for several hours, and look very like an epileptic fit. In all of these types of seizure, I lose my ability to speak for at least some of the time – perhaps the most frightening and frustrating symptom of these episodes – when I am unable to communicate the help I need. So I find it fascinating to note that a new type of expression has emerged out that very same place of ‘muteness’.
Despite being told by a primary school teacher that I could not ‘colour between the lines properly’, I was always intrigued by how I might express film, pencil, paint, thread or yarn to communicate some precious essence of the world I found immediately before me. I first picked up a camera aged 7 and since then dwelling on the miraculous details found in the everyday has become my passion, which I now sum up by the tag #epiphanyoftheordinary. Besides being a very visual person, I’ve also been a wordsmith since I was a young child. A teacher made me a book of my poems when I was aged 8, and I continue to delight in the intricacies of language and vocabulary, and the possibilities to be found in wordless pauses and silence.
Yet despite these passions, by my 30’s I had lost the vision of myself as a creative, and depression narrowed my vision to such an extent that life became about just surviving the next five minutes. Acute exhaustion and my feeble immune system often left me bed- or house- bound for weeks at a time.
In 2010, a combined team from local mental and social services came across the Farnham- based charity Creative Response, and found a package of funding for me to attend a 2-3 hour art session once a week based at a wheelchair-accessible space at Cranleigh Arts Centre. These sessions rapidly became my lifeline. The support of astute, encouraging and knowledgeable arts workers and arts therapists was amazing – literally life-giving. I owe CR a debt of deep gratitude, for without their intervention I would not have the confidence to call myself a ‘creative’ once more. The faithfulness of CR in adapting to the evolution of my physical and mental health needs over the past 12 years has been astounding, and I count myself so fortunate to be part of the CR family.
The immediate context to this exhibition is my adventures into the world of digital ‘paint’. As a reaction to the COVID-19 vaccines I received in March and May 2021, the FND seizures (also known as ‘episodes’) grew significantly more frequent and more severe. The muscles cramps, clawing and spasms were more painful, lasted longer, and were resistant to being reduced by mindful breathing, meditation and the distracting techniques and tricks that have been taught to me down the years. In addition, I developed a persistent tremor, which prevented me from finishing the huge lino-cut that I was in the middle of carving, and prevented me from finishing the oversized canvases upon which I had been throwing acrylic paint. Eventually, in my grief at missing yet another family gathering with my beloved nephews and niece; and in frustrated fearfulness that my life was just passing away before my eyes, one mindless game of iPad solitaire at a time; I decided that I needed to take a more proactive stance against the pain and the acutely limiting impact the episodes were having on daily creativity levels and thus my well-being. Despite not being a fan of the craze for iPad painting that took off after David Hockney, nor liking the levels of digital photo manipulation now so requisite for commercial photography, on a whim I decided to buy the ArtSet 4 iPad app. I soon discovered that I could manage a cack-handed form of ‘finger painting” (normally the clawed, shaking index finger of my right hand) and that it could be enjoyable, effective and satisfying. It focussed me on being playful, experimental and expressive (the polar opposite from pain-wracked, depressed and insular). Gradually I noticed that I could sometimes reduce the length and severity of the seizures by concentrating – or distracting myself – on playing with paint on a screen. I now know that immersing myself in colour, shape and line is infinitely healing for me.
This app has become a major tool for both me and my carers when ‘episodes’ afflict me. On a bad day, when a trigger might be as insignificant as a door slam, a phone alert or a leaf-blower, having a tool always within reach which might help me work through – which might heal – a seizure, is frankly miraculous. One day I shared some of the digital finger-paintings with my peers and arts workers at Creative Response, and the results of that sharing are about to be shown publicly for the first time.
The paintings emerge from my visceral emotional response to each seizure. Oftentimes the physical pain, emotional distress, and mental anxiety might result in pieces of counterintuitively bright colours and vigorous expressive strokes. Othertimes I may be particularly aware that my busy ‘monkey-mind’ needs calming and my breathing needs subduing, and so softer palettes are used, and more subtle images produced. Where paint is heavily applied in many layers or a multitude of media are used, I have either been subject to a particularly vicious bodily experience, and need a space to express my anger, frustration and disappointment; or I have become heavily involved, invested, and engrossed in the image, where all that matters is the making.
I know that many readers of this blog are scattered across the globe, so I hope to discover good ways of sharing some of these ‘episodes’ paintings with you here too – but in the meantime please do come to Farnham in July if you are in the area!