Wednesday, June 14, 2017

Making sense of life with illness

... just to be able to stop and, instead of catastrophizing what might happen, to say,

 "I'm just so grateful, because to feel this vulnerable means I'm alive." 

I thought I felt challenged these past few days because of the reality of pain and pretty extreme fatigue as aftermath from my marathon weeks of hospital and travel. But there is something else at play. 

I read this question on facebook yesterday from another person living with M.E.: [abstract] ... I am thinking a lot about purpose and meaning at the moment, especially because I am feeling unmotivated, depressed and *useless*.
While writing a response, I realised why I feel vulnerable at the moment: I am out of my comfort zone and realised how bizarre my life really is, in terms of the "norm".

feet and walking stick in fine beach sand
stepping into the real world
Having had my 'toe in the real world' during the Holland adventures, seemed to have unsettled me. A world in which I am surrounded by people who live normal lives. Who have jobs, family, kids, and go about their activities at will. (most likely a generalization, and not always true, but that is what is looks and feels like from my point of view.)

Maybe, I find it easier to stay in my own created world. 
A world that I understand and can function in. If that makes sense. 
No, it is not what I have hoped for in my life, but within my life with illness I have created a good life. I do truly believe that. 

These views are just a little askew at the moment. 
I have to find ways to find my own life again. To reconnect with my creativity, my garden, and my writing. To start doing things a few minutes at the time again, to reestablish a routine.

But also to give myself the time to feel what is really feels like to live with a body which does not conform. A body which is painful, and has many demands. To look at how I have a tendency to look at the good things, and to laugh away something that in all honesty is not funny at all. 

My dear friend Chris, whom I had the pleasure of spending a few days with in Holland, mentioned this too, during our last night's dinner. I asked her at the time 'not to go there, as I would start to cry.'
cocoon made by Artist Corina Duyn, covered in wasp nest paper, standing among plants in a garden
My animation project cocoon.
Nothing is a coincidence

So it really is important to now, in the comfort of my own home, in my own cocoon, to truly look at this. And to look at what the family reunion, and the making of Snapshots, means for me. 
Nothing is a coincidence...

Life. Creativity. Writing. Meeting people. 
Nothing is a coincidence...

Be well my dear friends, and I gladly hear or read your own thoughts on vulnerability, and how you finds ways to make sense of it all.


Therese Doherty said...

I identify with this, Corina. In creating my own life, my routines and activities, I have found a way to live with my illness (of course, there is always improvement to be made, but I do okay, I think). But the 'normal' world, and 'normal' people are things that I can't quite get my head around. The priorities are so different. And the system isn't made to accommodate people like us. So we're on the edges, the margins, which isn't always a bad thing. But it means we do have to fight, to be seen and heard, and understood; and to reconnect with ourselves when we are taken out of our normal life, to deal with the world, or people. It's hard work, but I think you are doing brilliantly.

Corina Duyn said...

Thank you Therese, for sharing your experiences, and for your kind words.
living with illness is a peculiar journey.
Be well!