I've been thinking about so many things lately.
Almost a year and a half ago, my Mum moved in with us, into a purpose built extension that we hoped would accommodate her increasing need for support and care. That is all good, and we are so glad she is with us now. What was not so good was her diagnosis of Lewy Body Disease (LBD) six months later after one of the most emotionally traumatic 6 months of our shared lives. In so many ways, I am still processing the feelings and responses that have resulted from this and that are still emerging in the ongoing aftermath as we negotiate treatment and care. I have written down my thoughts and tried to distil my feelings into a tangible form - to get them fixed on paper and out of a mind that frequently feels like a turbulent snow globe.
Over time I may share these as they begin to make sense and some kind of reason percolates through. In the meantime, the best way I have found to describe what my like feels like is to say I am living in 'negative space'.
Familiar to artists and those with a creative gift, negative space is often defined as the space around and between the subject of an image that forms an interesting and artistically relevant space. It is part of what defines the subject - the breathing room that determines how appealing it looks. Applied to our perceptions, it is the emotional expectation - what didn't happen and what wasn't good.
At the moment I am defining it as the sense of living life now in a different plane than the life I had, and the life inhabited and experienced by my family and friends. I feel as though I am on the other side of the thickest sheet of glass, looking out into life as I knew it, watching everyone else getting on with their lives - and they seem deaf and blind to what is really happening on my side of the glass. I turn away from the glass, it's too painful now and I am too disconnected.
When I focus on my new reality and concentrate my energy into surviving each day, I can cope. Each day is broken down into parts, we get through the morning, then the afternoon, the evening and then the night. And then we repeat. And the days pass. And the months.
And I have a clearer insight into the experience of so many others who are living through the day to day of caring, making such a difference to the lives of those they love and value. So important yet potentially invisible.
Looking forward is impossible, looking back is painful and seeing the present is challenging.
The eyes of my soul hurt with the effort of all the refocusing they have had to do.
But there is some clarity and a flicker of hope - and much of that has to do with the gift of stitches on needles and in sharing that with others. At some point I will look back at this time and be able to see how this negative space has been used to add depth and an extra dimension of love and meaning to my life story.
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