My wee stories of candour paint a picture of real life living with Myalgic Encephalomyelitis (ME) and disability, using words and experiences in place of paint and panels. There was unbearable suffering and challenge in the months after I contracted the unhealed virus and was living with an undiagnosed disability and chronic illness. I didn’t know how to live any other way than lying down for most of my days. When I did have a window of energy I used it fully causing severe impact on my conditions, I was unaware and unguided medically how to live by pacing. Pacing is the act of rest usually double time to the amount of activity, however it varies for individuals and can change daily. If I was to paint a picture at this time it would be very lifeless, grey and still, nothing like my vibrant abstract paintings.
An old easel of my husband Brandon’s was made available to me and we were sharing a studio space in a spacious back room overlooking the garden. A large
30 x 40 panel sat on the easel at the time and I remember how excited I was about my painting. I had so many new thoughts and ideas that I wished to explore on that panel. However, my painting sat on the easel untouched more than I was able to apply paint to its surface. I was using a sta-wet palette for my paints at the time and I would happily mix up my acrylic paint colours with excitement and joy only to be away from my palette for such long periods of time that the paint molded. The reality of ME and disability which is largely unknown. During this period of time I would go for months without being able to paint. Sadly I ruined a brush or two as I just didn’t have the energy to wash out my brushes and they sat rotting in water.
During this period of time while I was learning to live with ME and disability suffering and challenge were central words to describe life. My expectations for myself living with undiagnosed disability and chronic illness were far beyond my capabilities, although I was completely unaware of this. I was living life like I would get back to my normal one day, like healing from a cold and being well again. This was never going to happen and I was setting myself up for failure. As time went on I taught myself more about my conditions, the new lifestyle I required and began modifying my painting process.
Many of my muscle groups used for daily functions were seized and in severe pain for months and others for years, causing severe mobility limitations. I was experiencing difficulty taking the cap on and off of my tube of Golden paint. In my second year of recovery I was diagnosed with Global Fibromyalgia which explained most of the pain, severe inflammation and tightly seized muscles throughout my entire body. It should be noted that I advocated to be tested for Fibromyalgia. Diagnosis is always a supportive method to accepting lifestyle changes, at last I now understood why I couldn’t put a cap on a tube of paint.
While recovering from flares I would spend time when able researching art materials and observing materials used by other artists I admire. Over a long period of time I modified my process in order to promote success. Basically, I had many long flares and the time to work with out my new lifestyle. I spent more time in thoughtful rumination than in practice, as is the way with my conditions and disability. What I did was based in acceptance as it was humbling, I went from an exciting 30 x 40 panel to a 4 x6 panel. This was my new reality. I switched my surfaces to small sized panels and began using Acryla Gouache and short handled brushes to help with control of brush. Everything was small with the goal of supporting and strengthening my fine motor capabilities, using less movements and having light weight in hand always. One again I am reminded of decades of teaching experience modifying programs to meet the individual needs of my students as a painted a new picture of my life.
The main focus was to paint with the least amount of energy expended and avoid severe pain due to Post Exercise Malaise (PEM). With the hope that this would allow me to paint without PEM, flares, muscle pain causing pain and aching while gently using my small muscle groups. This modification promoted success in my painting while strengthening my fine motor skills, although it was a very long process of many years to reach the place of intention. In tandem, my modifications supported my gross motor skills allowing me to sit during short painting sessions. However, always with resting and pacing, I always spend more time in rest than any other activity daily.
Three years later I have begun to figure out what it takes to express myself living with Myalgic Encephalomyelitis and disability. I am successfully beginning to paint with acrylics once again, the joy of colour mixing is a simple pleasure for me. Holding a tube of Golden acrylic paint in hand with the thick creamy intense colour of the paint has no words to describe the emotion. And I can even use the Golden paint tube cap once again on most days, simple joys. Using a sta-wet palette for the first time in years I was even able to have paint left over after painting a couple of panels. This was something I wasn’t sure I would be able to use ever again, in fact now it is a super saver in time cleaning materials, saves me from opening and closing too many paint tube caps and prevents waste of paint. Not to mention the sta-wet palette is excellent when my body says stop, I simply can put on the lid and go rest within seconds. Today this requires a Hip Hip Hooray!
Mastering the practice of Pacing has been the key to my new life. Suffering and challenge remain main characters in my life, I have many techniques I have mastered to live with disability as my conditions prevent me from having consistency in my daily life. My specialist Dr. Bray’s sober warning that my condition is severe with a small window to decline leaving me bedridden. Pacing allows me to manage a day no matter what I am faced with. I also know that if I don’t pace and show devoted respect my conditions and disability my conditions can worsen leaving me beyond the point of return.
Thanks to pacing I no longer need to spend most of my days lying down but I do require being in a sitting position for most of my hours awake. Although my husband Brandon put a sofa in my studio for reclining and treatments during my day in the studio. One must always celebrate little successes no matter how small they are. Although my life is nothing which I would have ever pictured for myself midlife, it is what I have been given to work with and I am grateful to have life to live.
In my life today I am painting small paintings rather than stories, perhaps my stories are in my paintings. Has the narrative flipped itself perhaps? The vivid and vibrant colours in my paintings perhaps representing my positive joyful outlook on living life with appreciation for simple moments. After all the garden grows every spring into a beautiful colourful masterpiece of flowers no matter what is happening around it. A seedling always finds its way to the surface and light. In this wee enchanting story my life with disability, I hand picked my new life to emulate a vivid and vibrant flower.
Blog no. 12
Tidbits About Jane Louise Holden
On Jane’s Blog, I authentically write about real life experiences with loss, suffering and acceptance as a woman artist living with disability. There are times while in my studio I step away from my abstract paintings and turn towards words. My garden often inspires written words in the same way it fuels my paintings, words come to me connecting with thoughts as I sit in quiet peace with my garden.