Wednesday, 11 December 2013


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? 

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 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.

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.
Brookside Gardens

2. Finding pleasure in nature
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.


If you would like to read more from Gilly's blog, you can find it here

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.

Sunday, 8 December 2013

A thief in the night….

There is a thief that came in the very dark hours of the night. He came under my door as a black vapor I was sleeping so peacefully, so happy. He entered in the air I breathed. As I slept he went to work. He snaked through, tearing veins here and nerves there. My brain became his playground. Oh how he enjoyed it, the damage of it. Oh how he laughed when he saw the unforgiving pain he gave me. Then he moved to my emotions those where his favorite seeing how close he could push me until taking my own life. When they came to catch him they thought he had left. However he was still hiding very deep inside waiting to come out again and cause mischief. He stole my life; he stole my family, friends and my job. He stole how I enjoyed the wind on my face or an ice cold glass of tea on a hot summer day. He stole the feel of the human kiss and the caress of my face. Sleep is my only release, there I can have the life I once had...there is no pain there but in that sleep I know he may be waiting, waiting to come out and play. Then he smiles as I am awake and the pain begins all again
By Lori Bowen