Having had no real prior experience with the impact Epilepsy has to your life, when my daughter first started having seizures I spent a long time in denial and hope.
Denial that things were bad, denial that things needed to change, denial that my life – our life – would be impacted.
Hope that it would only be a short term thing, hope that a silver bullet would be found, hope that her life, health and education would not be adversely changed.
Well, I was wrong.
This condition has now taken a hold on both our children’s lives. My daughter from 10 months old, and my son from 4 years old, they are now 10 and 7 years respectively.
What I, what we, live with each day, each week, each year, is a tempest sea who teases you with periods of calmness, then reaches in and grabs your heart and squeezes so tightly that you forget to breathe. The clouds darken so quickly that the good times are now spent preparing for the bad. Life, or what remains of that life you imagined you were going to have, is a struggle. A struggle each day, a struggle each week, a struggle each year.
And of course amongst this raging storm you have the other parts of life that should, no must, continue.
Work? I go, I do what I can the best I can. I try to be a good employee, a good colleague – then the phone call comes. You down tools, let your workmates know and off you head to reassemble the shattered pieces of your life.
Your wife and you have needs, but tiredness, that ever draining relentlessness of it, means that often it’s an afterthought. Time together alone is precious, short and often you just want to try and catch up on things like sleep.
I could write so much more here, like social life, the health system, and the general communities treatment of those with Epilepsy. But I am tired, too tired to continue for now.
Take your grip off our lives Epilepsy, I’m sick of your presence.