The disabling nature of ME has taught me, or more precisely challenged me, physically and mentally to work within my limits. In the process of this work I had to discard many ideas I had as impractical, but the journey brought my photography, art and poetry together. So I used material and situations that appeared close at hand to create this work. For example, an accident in which glass got smashed, inspired me spontaneously to capture the image of shattered glass, symbolic of shattered dreams in my life. The artist dummy that had hardly been used "sitting on the shelf", became symbolic of how wooden, stiff and isolated one ends up with ME. The "dummy" also represents the "brain fog" symptoms. There are days when I have felt dumb, numb and literally got lost. But had to manage somehow alone. The artist's dummy is also symbolic of how faceless the ME sufferer becomes in society. Leading a life of limbo/isolation in bedrooms when the body is at war! Some severely bedbound for years. Hence the obvious concept of the bed installation, dreaming of a cure or a valid, consistent programme of care. I also did much of this work within my bedroom as and when I was able, trying to make the "invisible, visible".
"The contrast between life drowning in bed ill,
And the life outdoors
is frustrating to say the least,
wishing to be out there doing still
Instead feeling trapped indoors
with this burdensome beast"
The charcoal drawings and poetry reflect my emotional/spiritual quest. I do not favour any particular religion but I believe spirituality is important. Aspiring to be at peace within turmoil in body, Buddha too makes an appearance in my work as a calming influence. Before I became ill I loved to dance and had once ventured into learning classical Indian dance, Bharatanatyam, a temple dance full of energy. As Lord of the Dance of Destruction and Creation, Shiva Natraja appears in shattered glass and the charcoal drawing, in which I confront and compare the demise of my former energetic/relatively well self. At the same time not to give up hope of transformation within what seems like a hopeless situation in the long term battle for recognition that ME is not psychosocial but neurological, requires multisystemic and biodmedical research and care. M.E. is like an earthquake that destroys and reverberates through all parts of one's life in society, social, work, relationships, emotion and spiritual.
This work is still a work in progress much needed for survival, a way of reinventing myself and coming to some terms with this disability. It has taken more than three years to get to this point, slowly but surely, in between infections, lack of energy, concentration and the dreaded long term insomnia, consequent depression, and attempts at countless regimes to regain health. One step forward, two or more steps back! Oh how I wish for a "normal, healthy, life"!
The artwork and writing are part of my journey, steps towards acceptance and holding on to hope for the future. At times my brain fog/lack of concentration made things difficult, especially on the computer. I was almost obsessively having to check my writing again and again, however, brain was not always computing, thus missing errors! Then suddenly there it would appear, an error! Brain computing again. It's a constant fluctuating battle finding and losing words. So if there are errors remaining, I ask for understanding.
Apolonia J. Lobo