It has always surprised me, and deeply saddened me, how life seems to keep carrying on its way regardless of how you may be feeling or whether or not you are physically near death.
One of the hardest challenges in a chronic life is trying to reconcile these two opposing forces, that being the outside world (in all it’s unknown chaos) and the inner world of our health struggles and disabilities. They are in constant competition!
It is not easy and we are continually forced to decide between what our body needs and what the world is demanding of us.
Which is the right choice when you need pain relief but the bills are due? What do you choose when you are hell deep in a flare and yet your closest friend is getting married and would like you to attend? What happens when your disease is progressing and your relationship is falling apart?
We are constantly forced to make impossible choices. Sophie’s choices. Daily.
There are often times when physical pain and emotional pain go head to head. For reasons that only a saddist could understand a flare of trigeminal neuralgia (the suicide disease) may be eating away at your will to live and then suddenly a loved one dies. It’s unspeakably cruel. But it’s not something that the able bodied or healthy world can easily understand.
I describe these times like being asked to choose whether you want to be run over or set on fire… and then having both happen at the same time.
Life is unpredictable but so is chronic illness. Sufferers must try to make a life between the two worlds. In the eye of the storm. At the edge of the ledge. At the bottom of the well.
It’s not something that we should expect anyone to have to do, but many sufferers have to do it every day and may also have to do it alone.
So many sufferers have become so isolated and alone, for many different reasons including rejection and lack of understanding, and are left to try and manage all these hardships alone.
It’s so cruel and unfair… and that is why I keep writing about it.
Many people who may feel annoyed with my posts, who may tire of reading my experiences of illness or my accounts of the suffering of other chronic fighters, generally have no idea what fuels my reasons for doing so. The answer is that I do it for all the painful realities that get overlooked by the rest of the world and yet deeply and profoundly affect all those wonderful people who are fighting against insurmountable odds … and keep doing so for the ones they love.
I also do it for the ones that couldn’t fight these two worlds any longer and then made the hardest and most painful choice of all.