I believe I have a responsibility. That responsibility is to raise awareness about epilepsy. I have Juvenile Myoclonic Epilepsy. I have not had any Tonic-Clonic Seizures (more commonly known as Grand Mal) seizures for some time now. From time to time I do get nocturnal jerks or small jerks but it is not something that I get too worried about as I know it will be an ongoing part of me.
The reason I believe I have a responsibility is that I believe that having my epilepsy under control is a huge bonus. Stability can drive out fear. I am out of the vicious circle of worrying when my next seizure would come which would increase my stress level and deprive me of sleep. This actually would increase the chances of having a seizure.
Engaging with people has been rewarding. The first thing is that everyone is different. Even people with epilepsy have different experiences in a similar set of circumstances. Some people like me had a relapse when they were taken off Lamictal and put on Keppra. For others, Keppra has worked wonders. For other people, Keppra has made them irritable and angry. One common factor though is people with epilepsy do not want sympathy. What we want is empathy. We are covered by the Equality Act of 2010 but the last thing we want to do is consider ourselves to be disabled. I hate it when people say “I am sorry” when I tell them that I have epilepsy. People with epilepsy have the risk of SUDEP but having epilepsy does not mean I am dying. All it means is that I have a chronic illness because of which I have to change certain aspects of my life. I made a conscious decision not to drive but there are others who love to drive and the freedom that it brings. I can feel their frustration and pain when they get a seizure again and have to be seizure free before being allowed to drive again. I would love to have a relaxing head massage but that is something I do not do because I know it increases the risk for me of having a myoclonic seizure. I mentioned this to my hairdresser. He initially thought that his massage was bad but I told him that he was good it is just that it affects my epilepsy. He now just washes my hair gently. He also mentioned that he read up on epilepsy and his impressions have changed.
It irritates me when the image that people have of epileptics is one of convulsing people that are on the floor or restrained to a bed. People with epilepsy are normal and appear to be normal. If we do get seizures then it will take us time to recover. This can be as little as a few minutes to days. I’ve been to doctors who said that they could not do anything when I mentioned my stress and anxiety because I did not show any physical or mental symptoms.
My experiences and my ability to communicate with people is why I chose to bear this responsibility. My ability to research and write is why I chose the awareness path. Ignorance is not bliss and a little knowledge is extremely dangerous. My contribution may just be a drop in a bucket but at least it keeps filling that bucket.
As always I look forward to your comments.