Gilly Cannon writes a blog called Brainstorm. She started writing her blog when her husband developed Trigeminal Neuralgia in 2011. As we have said before, Trigeminal Neuralgia affects the whole family, not just the person who actually has the condition. The following is a post which she made in September, 2012 and it ties in perfectly with the puzzle picture which we put out on our Awareness Page today.The Jigsaw Puzzle Of Life
There is nothing
like sudden or unpredictable illness to throw you off kilter. In the
tightly packed, fast paced lives we lead, there is little room for a
throat infection, a virus, a broken limb or something more sinister. And
yet when it happens, with no choice but to accommodate it, you make
room for that illness in your lives and adapt.
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?
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)
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 electric pain but we recognise that we will always live with the shadow of some head and face aches that come and go unannounced. They are well controlled with medication, but anticipation and unpredictability inevitable alters our life puzzle and sometimes leaves us picking the pieces off the floor and trying to make them fit back in.
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.
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| Brookside Gardens |
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)
I take deep, slow, rejuvenating breaths, that calm and soothe.
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.
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.
Gilly
If you would like to read more from Gilly's blog, you can find it here www.gillycannon.blogspot.com
If you are a carer for someone with Trigeminal Neuralgia, or another horrible condition, how do you cope? If you would like to leave a comment below, please do. Or you can contact us at our Awareness Page on Facebook.
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