Simon

Still considered an ‘Orphan disease’, Epilepsy affects only a small percentage of the population and can still hold a powerful social social stigma. It’s often misunderstood, kept secret and judged negatively both historically and contemporarily.

Personally I’ve had experience of Epilepsy all of my life, my Mother was diagnosed with the condition at birth and I’ve been her full time Carer since 1994. Growing up in close proximity to an illness rendered it’s power, mystery and stigma mute for me. It’s always been a part of my families life. It’s a part of our everyday.

Seeing the effects of acute Grand Mal Epilepsy where the brain, body and emotions can endure severe symptoms and trauma, listening to stories of treatment in the 1950’s and 60’s, witnessing treatment over the last 20 years and seeing, first hand, societies fears and sometime loathing of a disease often so cruel to those affected prompted my desire to document how people deal and live today with the condition.

Tracking down local members of my community that live with Epilepsy was something I at first found daunting. The how’s and where’s were answered quickly as I asked around the wonderful network of people that I document. It’s a small town, people know people and a week after sending word out I had a list of names and places and I began with a first meeting with Simon and Kirsty.

Simon’s responsibilities are huge. He work’s every hour manageable and is Kirsty’s sole unpaid Carer.

Simon’s Father left “when I was very young, he’s in America now”. A frequent runaway, sometimes homeless from the age of 15 “always running away from my problems” he’s taken direct steps to “do the right thing” since meeting and marrying Kirsty. In recent years he was the principle carer, again unpaid, for his Mother whom had been diagnosed with liver cancer in addition to caring for Kirsty. This February is the first anniversary of Simon’s mothers passing.

Simon (22) and Kirsty (21) have been married for 5 years

Kirsty has Nocturnal Epilepsy, seizures that most often occur during sleep and frequent Petit Mal seizures and occasional Grand Mal seizures. Her Mother passed away when Kirtsy was 2. Simon explains “she had Epilepsy too, she drowned in the bath. We don’t lock the bathroom door here. Ever.”

Kirsty was also born with Tetralogy of Falot. A heart condition that causes an inadequate blood flow to the lungs for oxygenation. She has been fitted with an implantable loop recorder, a small device that measures incidents of syncope, most commonly known as fainting.

Suture scar from the fitting of Loop recorder.

The Loop recorder that Simon records activty of the heart with before, during and after loss of Kirsty’s consciousness.

There’s an evident state of teamwork and togetherness to Simon and Kirtsy. Love is evident. As are the hardships endured. Kirsty’s currently not taking any medication for her Epilepsy and the Carers that used to visit now no longer do.

Simon’s responsible for everything.

Kirsty and Bandit.

The other member of Simon and Kirsty’s family is Bandit. Bandit, by coincidence also has Epilepsy and is a close and loved companion. Simon’s training Bandit to be a seizure response dog of their own.

Playing with Bandit.

“If I’m away working for the day all I can think of is Kirsty, if she’s had a fit or fallen. She’s fallen into the bath before when it was filled with water, thankfully I was home. She’s had fit’s in bed at night, I wake up covered in bruises. We’ve been out, dancing but the lights have caused a seizure and I turn around and she’s on the floor. I’ve had fights, a lot… people say things, nasty things. I’ve been told to put her in a home. I’ve come home sometimes from work, Kirsty had a fit whilst I was away and she’s not been here, they took her to a Hospice. She didn’t know anything about it. I was terrified. I’d never put her away though, she’s my wife, I love her. The only place she’s going is right here, home. Our home.”

If you require any further information regarding Epilepsy ‘Epilepsy Action’ is a great online resource.