1. July 1st 2016 – epilepsy and me

My eight year old daughter, Gabriella, had choreographed a dance routine with her friend for her school show, ‘Year 3’s got talent’.  They had rehearsed at every available opportunity – at break-time, during playdates and at home by themselves.  They had chosen their own music, decided what they were going to wear and how they were going to do their hair.  I was very proud.  I was more than proud. Gabriella had worked together with a friend in a dedicated way to create something original.  But as I sat there waiting for the show to begin I knew that I wasn’t going to view the dance routine in the same way as the other parents.  Throughout the routine I was asking myself, ‘What aspect of the dance should I be looking at?’, ‘How do I tell whether this part of the dance routine is good or not?’, ‘Is it in time?’, ‘Should I be looking at my daughter’s friend now or should I be looking at my daughter?’  I knew that there was nothing I could do to answer these questions. My mind is a permanent fog.  And then before I knew it – quite literally – the dance had finished.  The mother of Gabriella’s friend had already got up and congratulated her daughter with a cuddle.  I was slow on the uptake and another mother congratulated my daughter before me (not that I blame the other mother – I was slow). ‘Thank G-d I am going to hospital,’ I thought, ‘so that the doctors can understand what is happening with my brain’.  The experience of watching the show was simply too painful for me and I desperately wanted to sort it out.

So here I am at the epilepsy hospital so that they can carry out an intensive assessment.  The theory is that I might be having lots of seizures, where I lose consciousness for a second or two, and I am not even aware of them. This is the hidden face of epilepsy.  As I am learning epilepsy isn’t just about having very obvious clonic tonic seizures which look dreadful, and can cause those having one to injury themselves.  It is also about small millisecond seizures that the person having them might not be aware of.  It is also what happens in between seizures – the epileptiform activity and how that impacts on cognitive function.  This epileptiform activity certainly seems to be impacting on mine – for example I mostly don’t process information (eg my three year old had decided to take off her wet nappy – I also saw that next to the nappy was a pool of water but I didn’t connect the two pieces of information – I didn’t think that the water was urine I thought that it was water), and my memory is very poor (eg if my husband talks about our holiday last year I can remember the fact that we went on holiday but the name of the resort or the details of a particularly day trip that we went on escape me).  But when talking to me no-one would know the difficulties I am facing every minute of the day – indeed this is the hidden face of all mental health illnesses because although I am in immense pain no one (apart from you because I have explained it to you) knows.

However, you will be pleased to know that I am doing 100% better than I was last year when I watched my four year old son perform the Gruffalo show at nursery.  My cognitive function was just as impaired then but I didn’t know that this was the problem.  ‘Why does this show feel boring?’ I asked myself.  ‘I just don’t want to be here’ ‘All the other mums seem to really enjoy watching their child in the show – why can’t I?’ ‘Why am I always like this?’ ‘Oh I think I will just go home and kill myself’.

So starting on Monday, I am going to be in a hospital room for five days and I will not be allowed to come out of it.  I will be wearing sensors attached to my head to measure brain activity, using an EEG, and I will be videoed from all angles.  The idea is that doctors will be able to spot on the video when I am having seizures and measure my brain activity at that point.  And, please G-d, on the basis of those results they will be able to make recommendations as to how to treat my epilepsy.

I will try and write a blog every day – I will be seriously bored (but of course the news is always a drama to watch these days, what with Brexit, the British elections, general political turmoil and of course there is always Wimbledon).  But just to let you know that I might not because I might forget to write.

To receive updates of my blogs please go to https://www.facebook.com/groups/371346339966284/