I am always heartened when I look through the posts and comments on the various epilepsy Facebook groups.  There are, without exception, always signs of courage and hope.  There are, of course, people who are depressed, angry and frustrated – it is quite easy to feel that way if you have epilepsy, or indeed any chronic condition, but hope, strength and often, faith, always shines through.

Let’s make no bones about it – epilepsy is an awful condition to live with: it has a history of thousands of years and still not enough is known about it; it’s unpredictable – seizures can take place at any time day or night and leave you with scars for life as well as anxiety that can cripple.  In my case, it leaves me with a cognitive function that is so impaired that mostly I feel detached from the world – unable to process the events that are happening around me. On a visit to a specialist, I often feel like an experiment – ‘Try this medication, it might help,’ the neurologist says (but I know that it might not).  The doctors don’t offer me the Hope that I crave.  So why, I think, does a Facebook group full of people (and their carers) with epilepsy show signs of positivity and resilience?  Why is there the will to fight on when many of these people have been given such a difficult hand.  It puzzled me but I think I have found the answer.

Recently, the Jewish people lost one of its’ greatest leaders of our generation – Rabbi Lord Jonathan Sacks.  He died of cancer at the age of 72.  As an observant Jew, I like hundreds of thousands of people around the world, felt a profound sense of loss at his passing.  Here was a man who had made the truths of Judaism not only relevant to today’s modern Jews but to non-Jews as well.  Here was a man who not only wrote about these truths, but lived them with humility, integrity and honesty.  ‘Now that he has gone’, I thought, ‘how am I to understand how his teachings are relevant to me?’. But the fact was, that even though I have read some of his works and even though I had actually been to hear him talk, I didn’t know.  I knew he was great but I didn’t know why.  Because that’s what epilepsy does to me.  It’s screwed up my frontal lobe – the circuits inside it constantly misfire – and however much I want it to, the stuff that I read or hear, doesn’t always go in.

But then I came across one short idea of his that really resonated with me and helps me understand how I live with my epilepsy.  In an interview on Youtube ^[1] Rabbi Sacks was asked that timeless question which never seems to have a sensible response, ‘Why do bad things happen to good people?’ and he gave a very sound answer: ‘God does not want us to understand why bad things happen to good people because if we ever understood we would be forced to accept that bad things happen to good people and God does not want us to accept those bad things.  He wants us not to understand so that we will fight against the bad and the injustices of this world and that is why there is no answer to that question because God has arranged that we shall never have an answer’. 

Thus, Rabbi Sacks was able to articulate something that I strongly feel, and maybe other people with epilepsy feel it too – that although this bad thing has happened to me, it doesn’t mean that I should sit back and accept it.  The world is ultimately good, and I have to find the courage and strength to seek the justice that I desire.  Indeed that is what God wants us to do.  If one doctor doesn’t know the answer, maybe another one will.  If one treatment doesn’t help – maybe there’s another one.  If one way of thinking about my illness isn’t helping, maybe there is another way that could help.  But there is another way.  Doctors don’t tell you that.  They don’t encourage you to fight.  It’s difficult for them to give you a sense of Hope when they don’t have all the answers.  So, you have to find that sense of Hope yourself.  And that is ultimately why I think that people with epilepsy have so much courage (notwithstanding histories of depression and distress) – it is because we cannot sit back and accept our situation – we have to fight on and battling in that way makes us strong. 

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[1] https://youtu.be/0rW1znjmPFE

As published in the Jewish Weekly 24/12/20