Standing with Alice
It’s rock climbing and abseiling
It’s free falling through the sky
It’s getting through the dark days
Without questioning why
It’s recapturing those lost years
When I was young and free
It’s revisiting the one I was
Before this monster came to me
It’s falling in love with someone
Without the fear of what they’ll say
If and when they hear my secret
If it will mean they’ll walk away
It’s not living with a shadow
A burning in your brain
It’s not living with self pity
And why I’m not the same
It’s not hearing nagging voices
About sleep and work and drink
It’s having the chance for independence
It’s having space to think
These are the things I envisage
The colours that I see
The goals I wish were close at hand
The ones I cannot see
But I am who I am
And though sometimes I’m not free
That’s just fine because
Without it I would not be me
Married to Epilepsy
My husband is now fifty three years of age and has Focal Epilepsy. He has been seizure free for the past five years.
I have lived with his active epilepsy for twenty five years of our thirty year marriage. During that time I dealt with the rearing of a family of three children, holding down part time jobs and dealing with his condition. It has affected my life and that of our children on many levels but in particular as follows;
Employers distrust people with epilepsy leading him with no option but to become self employed. This meant that our financial position has been very erratic and at some times perilous.
Epilepsy is a condition nobody wants to talk or hear about. We hid his condition from family, friends, employers, colleagues, etc. Don’t get me wrong, they all knew he had epilepsy but nobody ever saw him having a seizure. I felt I was totally on my own and still do!
C. Personal Relationship
I feel I have carried this family, shielded my children and my husband. At times he was like another child in the family.
Watching my partner having at least two seizures a month for twenty five years caused enormous stress on me personally. He didn’t drive for eight years so I was driving everyone everywhere including driving him to work. It also affected our social life as we always had to leave parties or gatherings early. Sometimes we could not attend!
Let me add that my husband is the most courageous, honest and upright person I know.
EPILEPSY IS A VERY LONELY PLACE.
EPILEPSY CARE FOUNDATION
The Epilepsy Care Foundation was formed as a not for profit registered charity (CHY18588) in 2009. Epilepsy is the most common serious neurological disorder affecting 1 in every 115 people. Currently there are approximately 35,000 people above the age of 5 years who suffer from Epilepsy. The aim of the Foundation is to improve the level of care available to people with complex epilepsy and related disorders in Ireland.
This will be achieved through the following:
1. The development of a National Centre for Epilepsy Care which will be a ‘not for profit’ facility open to public and private patients.
2. Provide rehabilitation and life skills training to individuals with epilepsy and associated disorders.
3. Improve the level of awareness of epilepsy amongst the general public.