It could be your own illness, your spouse's, your child's or your parent's. Each affects your daily and weekly plans differently. But each impacts and squeezes your carefully arranged puzzle piece life where everything just about fits together perfectly (on a good day!). Whether it is staying home from work to nurse your child through an ear infection,adding in a visit to your aging parent every day in a nursing home or accompanying your spouse to endless doctor's visits and treatments. Somehow your bit piece life expands to allow these extra parts to fit in.
What happens when the jigsaw pieces have been thrown in the air and some land upside down or on the floor ?
What happens when a piece is broken or lost forever?
How do you begin to piece the picture back together? Repair the broken pieces, substitute the missing ones?
How do you live with the uncertainty that you may never complete the puzzle as you know it again and rearrange the puzzle into a new picture?
How do you find the energy to pick up the pieces, examine them again and start over?
Trigeminal neuralgia forced us to rearrange our puzzle. As I described it back in November last year in Brainstorming-Fri Nov 4 2011)
Nerve pain is a challenging opponent. Trigeminal nerve pain has an armory of weapons and is difficult to fight. it has unpredictability,suprise,increasing intensity and immunity to medication on its side. It shows no mercy,bombards for hours with electric,stabbing like pains and demands attention day and night. it tortures its victim for months and his loved ones who feel helpless and lacking any weapons with which to fight.
A year on thanks to the success of brain surgery, Jonny has NO electrical pain but we recognize that we will always live with the shadow of some unpredictable head and face aches that come and go unannounced. They are well controlled with medication, but anticipation and unpredictability inevitably alters our life puzzle and sometimes leave us picking the pieces off the floor and trying to make them fit back in.
As the caregiver my life jolts back and forth like driving a car with the brakes on and my response has evolved in the following ways.
1. Long term planning
We are finding our way back into making long term plans. It has been a while since we have made them and there is a volatility about living with facial pain that we are learning to manage and adapt to. So in the meantime I ask my friends on the spur of the moment to come for lunch, go for a walk, watch a movie, have a cup of tea and they have generously learned to be spontaneous with me.
2. Finding pleasure in nature
|Spring at Brookside Gdns|
I walk in beautiful gardens ( Brookside Gardens is a favorite.) I plant flowers, lots of them, everywhere. Their life force, beauty and color and pattern lift up my soul and remind me of birth, growth and resilience in this uncertain world. ( You may enjoy reading Rabbit Wars and Among The Weeds)
3.Taking Care of myself
I take deep, slow, rejuvenating breaths, that calm and soothe.
4.Having excellent access to the medical specialists
I have the name of the neurologist on speed dial. I text him and he calls us back. He cares that our life's jigsaw should not be so interrupted and provides encouragement and solutions that shape and mold the puzzle pieces back into place.
5.Finding Comfort in prayer
I pray, hard, often, with others and by myself. I talk to G-d and whoever guides me. I ask for help and insight and courage and wisdom and sometimes when I am listening carefully an answer comes to me as a whisper in my heart.
Some days the jigsaw pieces fit together better than others.
When there seem to be too many puzzle pieces with bumps and not enough pieces with holes– I hope that love, laughter, friendship, natural beauty,creativity, prayer and support, hopefully fill the gaps for you as they do for me.
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