Murals (2008) by PHANTAST - Graffiti - Cultural Music & Art Association inc. - 98 Milne St. Benleigh
A PROFOUND SENSE OF LOSS OF CONTROL : GUILLAIN - BARRE SYNDROME.
A sudden illness is a special kind of shock; you can't blame others for it, or even yourself most of the time. Some blame God, or even find theological justification for their "punishment".
When I went within 24 hours from having a reasonably well- functioning body to having one which couldn't walk, had difficulty feeding itself and was wracked with pain, the feeling of loss was massive. Giillain - Barre syndrome is a rare disease of the nervous system which paralyses peripheral nerves, which control feeling and movement in limbs, face and, in some cases lungs. It is sparked by a challange to the immune system such as a minor infection or even a vaccination. One of the most bizarre effects was that my face was paralysed for many weeks, affecting my ability to eat and even preventing me from closing my eyes. Along with this was severe pain which had to be relieved by narcotics for more than twelve months. Provided the disease's progress can be stopped by immune therapy or plasma exchange, nerves can regrow and relearn their role in the body, but it takes a long time. In a society which so values independence, the loss of the most basic physical independence is a profound change in your social status. From day one I adopted a stoic determination to see it all through to a successful conclusion, but of course I didn't. The main emotion I think I felt was frustration - how am I ever to get out of this? While those around me - family, medical staff, friends - maintained an optimistic outlook, this can be pretty hard to reconcile with a pain wracked and malfunctioning body. Frustration is, I think, an important component of grief - the inability to see our way out of a situation leads to a profound sense of loss of control.
The only step I had any "control" over was the next tiny one; but the urge to maintain and restore life which surely comes from God is also a vital element. The next tiny step I mentioned is still vitally important. We can try to ignore life or even oppose it, but the return on investment for joining forces with life is huge. Although I am certain my recovery is a gift - from God, family, friends, medical staff - gifts need to be taken to be fully enjoyed. I've now had the privilege to speak with 3 people who have had Guillian- Barre syndrome at an early stage of their treatment. By contributing to the recovery of others we receive an even greater benefit back to ourselves (Alex M.)