By Lorraine Lally
I have written this piece in support of International Epilepsy Day 2020. My life with epilepsy began as a child, when I was not fully aware of the extent of the seizures, the daydreaming and losing time. The diagnosis of epilepsy was something that made my mother cry and made my dad smile, as he said, “at least we know”.
The stress of epilepsy on those around you growing up does have an impact. I often wonder if the seizures are preventing me from dreaming like others. There is a definite link with my emotions, when I am distressed for someone I love, then I am likely to have a full tonic clonic. It is as if my body rejects the bad news.
Having a boyfriend with the epilepsy is always an interesting conversation. Definitely one way to find out if he likes me. Going away to college in Dublin was my dream. In spite of the hesitation that my parents had, I believed that one life with choices and free will was better than a life of limitations with fear ruling over all decisions. I was careful living away from home because stress triggers seizures. On arriving in college, I had a seizure in the library and ended up in the nearest hospital with the neurologist that I still have today. My independence was often not encouraged by medical doctors.
The interesting thing about epilepsy is that you don’t have control of the condition, but you have control over most things in your life. I realised with my condition that I get to choose what I worry about and who I love. The other important revelation I discovered living with epilepsy is the need to share the condition with others and to ask for help. I still hate asking for help, but I refuse to feel shame as a person with the most common neurological condition in the world. My epilepsy has meant many medications, including one drug nearly killing me after a few months of being ill and an isolation unit in my home town. I overcame Stephen Johnson Syndrome and the other bad reactions to epilepsy medications.
Epilepsy places you at an increased risk of depression and other mental health issues, partly because of the involvement of the brain. My family members have told me that after a seizure, I often push my loved ones away and look absolutely terrified. The aftermath of a bad tonic clonic seizure in my sleep means that getting up is really a big effort. My legs are cramping like I ran a marathon in my sleep along with bruising and pain. My epilepsy is a part of me and I have grown to love life with the condition.