Blog 47: Epilepsy & Death

As I said yesterday I am proud to say that two of the people closest to me have shared their story this week to raise awareness. Today it is Alexs turn. I have mentioned Alex many times but I don’t know if I have ever talked about how we met. We both became members of an epilepsy support group for very different reasons, mine because in the summer of 2011 my epilepsy was at the worst it had ever been at that point. Alexs reason was very different, Alex was in a relationship with Ollie when he unexpectedly and tragically passed away following a seizure in November 2011 aged just 19. Neither Alex nor Ollies family had ever been told that epilepsy CAN kill. 

In the January of 2012 we found each other, Alex was like a deer in the headlights, very shell shocked from Ollies death and things that then followed such as an inquest. Not something at the age of 19 you ever think you will have to go through. I was lacking confidence and trying to regain control of my life again. We clung to each other for very different reasons but it worked, we gelled instantly. Someone once said to me that had it not been for epilepsy myself and Alex would never have become friends because we seem so different, on the contrary we have discovered we have so much in common. Whilst epilepsy introduced us it is not what binds us, a friendship has developed that is based on so much more. So maybe I would never have met Alex but I believe that some people are meant to be part of your life, and Alex is that person, I believe we would have found each other some way or somehow. Alex allowed me to put a few questions to her and I have left them completely unedited.

What did you know about epilepsy before you met Ollie?
I honestly knew nothing. Other than what people stereotypically think happens when people have epilepsy. It really wasn't something I had ever thought about or got to know.

What did you learn about epilepsy whilst with Ollie?
Ollie was very honest about his epilepsy and from one of the first times we spoke in class I knew he had epilepsy. He made a point of telling the class and explained to us what we should do if he did have one. That was the first time I had been told about epilepsy and was my first experience of it all. A few months into me and Ollie dating I saw him have a seizure, luckily we were at ollies house so I could grab his mum. It really was terrifying. It looked like someone had thrown him across the room and while having his seizure there was nothing I could do but watch which was horrible. Ollies mum talked me through what to do and how long to wait before I would need to be concerned and the issues if he went into another seizure. What shocked me the most was the fact he couldn't speak for a while after and thomasina was so gentle chatting to him coaching him to speak which is something I took on board and learnt for future times. It did break my heart seeing Ollie have a seizure for the first time. The look on his face once he realised what had happened was devestating. He didn't want me to have seen it.
I learnt a bit about his medication and what Ollie was on and I looked into what epilepsy is and how it causes seizures though I have to admit that was all I really learnt. Ollies family dealt with it so well and all seemed to be relatively controlled that to me it didn't seem like a big deal and was just part of ollies life. It wasn't really until Ollie died that I learnt so much.

Were you aware that epilepsy could kill?
It feels stupid saying it now but I had no clue that the epilepsy itself could be the killer. I knew it could put you in dangerous situations ie having a bath or if eating food or something it could cause death but I didn't know that SUDEP existed.

Was their much/any support available to you after Ollie died?
The first time I heard of any support was when we went to the inquest of ollies death. SUDEP Action had ensured that all coroners would ensure we were given information on them when it was an epilepsy related death. So I was giving a brochure about the counselling they offer for free for family and friends who have lost a loved one to epilepsy. I was given 8 phone counselling sessions which would have cost the charity £400. Baring in mind I didn't hear about them until February and Ollie died in the November. I did look for other support but I didn't fit into the right group. I wasn't a child and I hadn't lost a family member so I couldn't get any support from other charities. I really struggled in those first few months especially as I had never had anyone I know die and especially not someone I loved so much.

What have you learned since Ollies death?
I have learnt how common epilepsy related deaths are, how so many young people as well unfortunately pass way. I now know what SUDEP is and the different kinds of seizures there are. Through Having fiends that have epilepsy and a friend with a child with epilepsy I have learnt more about the struggles they face, medication and the complications of taking some over others and more about medical professional. Ollie never had an epilepsy nurse he would just see his neurologist every 6 months I believe but having heard Faye talk so highly about her epilepsy nurse it just shows the difference they can make to people's lives. It also shows just how the care for people with epilepsy varies depending on where you live, there is no consistency. I have learnt about how much funding and research is needed. Epilepsy get so little in the way of support and up funding from the government.

You fundraise, what made you set out to do this?
At first it started as a way to cope with the grief and a way to remember Ollie by. It soon turned into a way of leaving a legacy in Ollies name as he cant do it himself. It's also my way of ensuring that others don't have to go through what Ollies family and friends had to. Ollie could have been anything he wanted and I have no doubt that had he been alive today he would be doing something great, the money raised is done because Ollie can't change the world but maybe we can in Ollies name.

What achievement(s) are you most proud of with the fundraising?
More than anything I am just so proud that we have raised over £30,000 for epilepsy action and in ollies name. I never imagined we would raise this much and now the aim is just to continue to raise more.
I am proud that I received an award from epilepsy action for the fundraising and that I have had the opportunity to be in the paper and radio to talk about what I do but I never did any of this to be recognised and in fact I feel guilty almost for getting recognition as loosing Ollie is the reason I am getting it.
Through all my fundraising I have been able to push myself and put myself through some extreme challenges. I will always been proud that I achieved them and that I know I am strong enough to do them. Skydive, Ben Nevis and of course the marathon are some of my greatest achievements that I will never forgot.

What more can I add to that? She is remarkable and is doing her best to make sure nobody else goes through what the Scott-Greenards and Ollies friends and family have. As I have mentioned before I was not aware epilepsy could kill until I was about 25 and joined support groups, it was only first mentioned to me by a professional when I was pregnant because I was at higher risk. If you would like any further information on SUDEP (Sudden Unexplained Death in Epilepsy) please click here: https://www.sudep.org/

As Alex said Ollies legacy is the sunflower fund, if after reading this you would like to donate you can do so here: http://oliver.scott-greenard.muchloved.com/

Contact me:
Twitter: @fairyfaye1986
Email: [email protected]
Facebook: https://www.facebook.com/groups/739520702798749/