In a powerful personal experience about the lived experience of epilepsy as part of our series in the lead up to #EpilepsyDay, we were sent this piece by Ciara Holden from Co. Kildare about her journey with the condition. Please take a few minutes to read and share to help increase understanding and awareness….
It was on an autumnal night, twenty-eight years ago, when my journey of living with epilepsy began. On his return from the bathroom in the middle of the night, my father checked on me, only to find my body half slumped off the side of the bed and his little girl unconscious.
This was the beginning of a long road of hospital examinations, admittance, and annual appointments.
I could give you the simple, straight forward factual overview of this time for me but still, now, I remember how I felt during that initial month of diagnosing. I was scared, deeply confused, and detested when I had my first ECG, and my hair was covered in gooey gel stuff that took multiple washes to wash out fully. This was my first time at a children's hospital, it was, at the time, HUGE. I was placed in a room by myself right next to the nurse’s station, a large pane of glass separating them from me. This was so they could monitor me closely, it felt like being trapped inside a television.
When I wasn’t in receipt of some form of medical test, I was made attend the “school” that they had on my ward. I still had to do some learning even though I was in hospital - seemed a little unfair to me! Other times I was allowed to play with the other children in the play room but those times are like blurry images in my head, I can see, but not clearly, which is ironic because that is how my eyesight has been not long after I was diagnosed with epilepsy.
I remember sleeping a lot, which to anyone who knows anyone with epilepsy is very normal after a seizure. Seizures, now they are horrible! The seizures I have are tonic clonic, the more intense body convulsing fall to the floor and shake and spasm one. I cannot recall how many times I have bit my tongue or been in absolute pain all over my body thanks to my muscles tensing repeatedly for the duration of the seizure. I can sleep for days, that’s how long it can take just my body to recover. Never mind the sheer embarrassment and shame you feel afterwards because you lost control of your bodily functions during the seizure, my parents, friends and later in life my ex-spouse had to witness. It was demoralising and humiliating and something I would come to realise later in life stuck with me and affected my interactions with people when talking about epilepsy.
On top of that, the medication I was put on was a high dosage and contained a steroid which made me as a young girl put on quite a lot of weight. When I was released from hospital after that night, I was kept off school for a couple of months to adjust to the medication and ensure that it was working, and it would be safe for me to return to school.
Upon my return to school, I was a completely different person, both inside and out. My way of looking at the world changed. Thought and consideration had to be taken before I could partake in the crazy things’ kids do as the aftermath could have been detrimental for me. I got bullied because I was fat and because I struggled in class.
My memory was very affected. I experienced short-term memory loss after each seizure. I would forget things that happened, conversations had, lessons learned in school from anytime seven days prior to the seizure. It’s safe to say that this had some serious repercussions for me, especially in my education. It led to having to defend myself against teachers in school who accused me of being lazy or not applying myself because I now struggled with particular subjects. To being made a spectacle of in the classroom in front of my friends and other students by the teacher. In the end it resulted in my mother going straight to the school principal and having to insist that I be excused from those particular lessons. After two months they finally relented.
See the problem there was, epilepsy wasn’t heard off. Nobody knew what it was and because it was associated with the brain, many deemed it a mental illness. Sad to say though that even in the day and age we are in now, people are still unaware, or know of it, but are uneducated on it and then we still have those in society who think it is a sign of the person being crazy. The stigma attached to epilepsy is truly baffling to me as it is much more common than people are aware and yet our education system fails to educate children on these matters which can only improve their knowledge and future interactions if they ever meet someone who has epilepsy.
Epilepsy Ireland is a great source for support and information. I had to call on them recently as I am now a mother myself, living alone with my child who needs to know what epilepsy is and what they can do to help me if I ever have a seizure when they are around.
Once again, this brought up the residual feelings of shame and embarrassment. The fear of ‘what if this happens around them’.
If it does; they are now educated on epilepsy. They now understand what a seizure is and what triggers my seizures. They are now mindful around me and understanding. They are now more informed than most adults I know – but really, you shouldn’t have to have a direct connection to epilepsy to be informed on simple actions such as seizure first aid
My journey with epilepsy isn't over, and I consider myself one of the lucky ones as my seizures are few and far in between but I wanted to share my story in the lead up to International Epilepsy Day – to let others know that you are not alone on this journey; and to appeal to the public to please learn more about epilepsy. As I mentioned, its much more common that what people think!
Thank you, Ciara, for sharing and being so open and honest about the true challenges of epilepsy and how important it is for the public to learn more. If you’d like to share your story, visit the 'International Epilepsy Day' section of our website to find out how to get in touch with our team- or visit the 'Seizure First Aid' section of our site to learn more about Time, Safe, Stay!