by Matt Frow
I would like you to take a trip back to June 1972. This was when I was born. Unfortunately, I had a difficult baby hood. As an infant, I had difficulty breathing and had hearing problems. My hearing problem was solved but I developed a speech problem due to the operation. And it doesn’t stop there. At 6 months old I had my first seizure. I can’t imagine what my mother was going through or what she thought when the doctor said I had epilepsy on top of everything else.
My life as a child through my teen years was normal with just a few seizures now and then. In my late teens and early 20s I talked to my doctor about going off my meds (at this stage I was on Phenobarbital) and since I hadn’t had a seizure for a very long time I thought it would be possible to go off my medication. I knew I wasn’t cured and I would have to be careful not to have another seizure but I wanted to try to go off my medication.
Then something happened to me that changed my life completely. I was upstairs mopping the floor in the bathroom (I’m not a cleaner) and someone wanted to use the toilet. According to her I suddenly went grey and I had a seizure.
I went to the doctors. They x-rayed my brain and it was all normal. Then I went to see my neurologist. He told me about my epilepsy nurse (I would like to thank them for their support). That event didn’t change my life so much.
This did. I was on Twitter and I searched for Epilepsy on it to see what I would find. I found Epilepsy Action. They used to be called the British Epilepsy Association and when I was 11, I went on holiday with them. Other epilepsy groups and organizations started to pop up and I added them to my Twitter feed as well, along with other people who are affected by the disorder. I won’t mention any names because I think they know who they are. But I want to thank them for being there for me and for being in my life. They are like a part of me and an extension of my family. There are a lot of people on Twitter who mean a lot to me, they are my rock.