As a neurology nurse, I get to meet a lot of people who have the debilitating conditions many of the general public do not even know of.
One day, I was admitting this patient from Ireland. He came all the way to London just to have a better treatment for his condition. He is currently fighting a lifelong battle with Epilepsy.
Whilst most people battle other diseases which, most times, give people limited time to live such as cancer. Other people have this chronic condition, Epilepsy, wherein you just have to deal with having no idea when the fits would actually happen. Epilepsy is a chronic condition wherein a person suffers with epileptic seizures often called ‘fits.’
The middle aged Irish man suffers from epileptic fits or seizures at any time of the day.
People like him will sometimes feel what we call as ‘auras’, sensations that warn them that they may have it, and then they lose awareness, depending on the kind of fit they have.
They may wander aimlessly, and may develop into what we call as a generalized tonic-clonic seizure, which is characterized by involuntary jerking and shaking of extremities for minutes.
They might lip- smack, eyes look up, do motor automatisms and may salivate with the seizures. Some may lose control over sphincters and may urinate and open bowels in public places.
While I was doing the admissions, I get to ask questions that involve his general condition. I get to ask him the kind of seizures he have, the frequency and even the injuries he have had and how these affect him and the people around him.
Telemetry Unit in The National Hospital for Neurology and Neurosurgery for Epilepsy
He walks in a limping gait. When asked why, he said he fell off once in a harbour in Ireland and broke his spine.
He has multiple bruises and lacerations in his life. He is single in his forties, unemployed, impatient and shy. He hated his condition.
I asked him how he felt.
He said he feels like he has no freedom. He is imprisoned with this disease.
“I want to be free”, he said.
“Coming here alone, I have to bring my brother-in-law, because I have to be safe. I don’t want people to always be bothered because of me. They have a life too, you know”.
“ I can’t go to public places on my own.”
“I can’t even drive. “
“I love driving.”
“And here’s me, I don’t know how to drive”, I interrupted.
He laughed. But yes. He love driving and staying in the car going places. He can’t do that.
People diagnosed with epilepsy are never given driving licences or their licences are being revoked after diagnosis.
These and many more stories came out of real people’s lips, I listen how these people with epilepsy are affected by this disease.
Anyone can have Epilepsy, I’ve met a single mother of one daughter sends her kid to school worrying about being caught by classmates that she has this disease, worrying when she crosses the road with her child and lose awareness.
I’ve met a father of three little boys, leading the kids in a camp, fell and injured his face when went off track after losing awareness.
I’ve met a young lad, losing self-esteem after all the bullying.
I’ve met a beautiful lady, losing her eye contact, keeps her seizure diary to keeping track of her seizures hoping one day all of it would make sense and the medical team would find a way to completely solve her disease.
Cliché from all of us, but yes, we fight different kinds of battles but sometimes, we take for granted the little yet vital things we have. Like Freedom. Freedom to grab the life we have in front of us.
I hope we pause from our busy day. Breathe life, brush off fickle and trivial things that stress us on a daily basis. See life in a larger, and more positive perspective.
Enjoy life, have the spirit of thanksgiving, of helping each other, of understanding and of spreading love and kindness wherever we are placed in life. And to becoming the best version of ourselves.
To know more about epilepsy, how to help and to be ready to help, you can visit epilepsysociety.org.uk.