Epilepsy and Agnes….

Agnes was my great, great Grandmother. GGG Agnes was married with 5 children. She died in 1914 during a seizure. Does that mean I’ll go the same way? Not at all. What it does mean is that I am/was genetically pre-disposed to having epilepsy. I have the epilepsy gene if you like. What I did wonder is what having epilepsy was like for her. So, I did what any self-respecting researcher does and asked google.

Oh that was interesting. On an American site I came across the Harry Laughlin project at the Eugenics Record Office. In 1914, he published a Model Eugenical Sterilization Law that proposed to authorize sterilization of the “socially inadequate” – people supported in institutions or “maintained wholly or in part by public expense. The law encompassed the “feebleminded, insane, criminalistic, epileptic, inebriate, diseased, blind, deaf; deformed; and dependent” – including “orphans, ne’er-do-wells, tramps, the homeless and paupers.” By the time the Model Law was published in 1914, twelve states had enacted sterilization laws. I wasn’t sure I wanted to continue researching at that point so I think I’ll probably come back to it later. But, what I will say is that there are many tomes out there to read and study and get a background on the condition. Maybe I can become my very own epileptologist.

So, I was quite happily at work one morning. I used to work with pensions, although that seems like another life time ago. Anyway, I had a seizure. Now this was my very early 20s and I don’t really remember too much about it. Apparently, the big boss came over to me and tried to calm me down and he made the mistake of calling me “doll”. I told him, in no uncertain terms and with a few expletives thrown in for good measure, never to call me that again……he didn’t. Anyway, I was taken to hospital. I have no recollection of being there at all. I disappeared. Literally and, at that time, figuratively too. I reappeared at work a few hours later, minus my coat, my shoes, my bag and the friend who had come with me to the hospital. It turned out that the hospital discharged me, but didn’t tell me anyone was waiting for me, and I had a mild head injury. So, when I was told I could go, apparently that’s exactly what I did. I walked the 1.5 miles back to work from hospital. I don’t remember that walk at all. My brother and another friend were searching for me by car when they found out from my, by that time, frantic friend that I was not where I was meant to be. I don’t know how I crossed the roads. I don’t know how I knew where work was. I appeared back at work, announced I was tired, went to the bathroom and tried to take my clothes off so I could lie down there on the floor and go to sleep. Then I had another fit and back to hospital for me. My Dad was furious. My brother was furious. My friend was deeply upset. My workmates were worried. I was oblivious. My Dad wrote angry letters to the hospital. They wrote apologetic letters back. I retreated into myself again. I tried to pretend everything was fine, but it wasn’t.

At that time, I don’t think I realised that I was putting on an act for everyone. I don’t think that filtered through to me until a long time afterwards when I started accepting that I was suffering from depression and that the depths of the depression were linked to my epilepsy. I wonder how it was for GGG Agnes. I wonder what she knew about epilepsy. I wonder if she accepted it, the way I have and decided not to let it rule her life, like I have. I wonder how often she had episodes. I wonder if the one that killed her was her first as well as her last….According to her death certificate, she was alone when she died. I wonder if she knew it was coming. I wonder if she had auras. I wonder what she was doing. So much wondering, so few answers. The autopsy that was carried out on her body, confirmed that the cause of death was asphyxia during an epileptic fit. This made me wonder if she even knew she had epilepsy. Was it a family secret? A dirty little secret hidden away until I came along. Actually nobody told me that relatives had suffered with epilepsy. My parents knew but chose not to share it with me. I only found out because I started tracing my family tree. I’ve never asked them why they didn’t tell me. It would have been useful to tell the doctors, but I’m sure they had their reasons.

My friends are the best in the world and I’ve been exceptionally lucky with significant others’ too. One boyfriend picked me up and put me back together more times than I can mention. He coped when I had a seizure in the front seat of the car while he was driving, he pulled me naked out of the bathroom when I pitched a fit in the shower (he later admitted that watching me fit naked was one of the funniest things he’d ever witnessed – we laughed a lot about that), he picked me up from work when I had episodes and he signed waivers so I didn’t have to go to hospital. He did it, because he accepted that it was part of me, and that, me and my epilepsy are a package deal. He did it because he loved me. A few years later, I was in London one weekend visiting with another significant-other. I had a seizure in his bedsit. He didn’t panic, he didn’t cart me off to hospital. He stayed with me while I slept it off and then the next day, took me back to Edinburgh in the train so I didn’t have to do it alone. He did it, because he accepted that it was part of me, and that, me and my epilepsy are a package deal. He did it because he loved me.

Nobody has ever really been able to confirm what actually triggers seizures in me. As part of my recovery, I have to know what happened in the run up to the seizures. It’s my way of trying to understand what has happened and maybe try to pinpoint the trigger. I plague people who were there with questions. I try to piece it all back together. Some people are quite happy to give me the blow-by-blow account that I’m asking for, but others are less comfortable. I understand that. They don’t want to upset me and maybe they don’t want to have to recall it. But I have to know.

Epilepsy makes me stronger every day. I sometimes forget that. Every time I have an episode, I get back up, I dust myself down and I live life again. No, it isn’t easy. Yes, sometimes I get bogged down and it feels like trying to move forward is like wading through mud.

I’m living my life the best way I know how. Isn’t everybody?

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