And so the plot has a slight twist. The neurologist came round on Friday morning and said to me (more or less), ‘I looked at the computer to see what was in your head and the computer said ‘no’. It said ‘No we don’t know what causes your problems – it’s not epilepsy. So you are going to have to sort it out yourself.’ .’I said, ‘What?’ and she said, ‘Well it’s like this I’m a neurologist. I deal with epilepsy and I the data that we have taken from you this week says that although you are having some epileptic activity it’s not enough to make you feel the way you say you are feeling. So really it’s not my business anymore. Go back to your GP and see if she can refer to you to someone else.’ As in all cases like this it wasn’t the computer that I was angry with, it was the person operating it.
And so people have told me – the result is good – ‘At least you have ruled something out – your epilepsy isn’t the cause of your problems’. ‘Ok’, I think to myself. ‘But I have a lot of problems. I really wanted to rule something in’. ‘Well then at least you don’t have to have brain surgery,’ they say. But the person with epilepsy knows that medication only helps 70% of people with the condition. The other 30% are a bit desperate and would try anything, including brain surgery, if they thought it would help them.
Others say – there is Hope. And honestly, I really do believe in G-d. I don’t believe there is another way to explain everything. But really when the going gets tough it is hard to believe. I want to believe, but it’s hard.
The third thing that people say is ‘Look for the positives’. This I usually think is a pile of crap because how can you look for something positive if you don’t know what you are looking for. But in this instance I have found two positives. Firstly, I met some really good people in Chalfonts. I have found, over the years, that people who are going through a really tough time are some of the most real and beautiful people I have ever met. And when you are going through a tough time it helps to be near like-minded souls. It doesn’t need to be a structured therapy session – just having a chat with someone that knows is just really good. And it was good to speak to these people (when I wasn’t stuck in a room) and understand their journeys and to share their pain.
Secondly I have found writing. I like writing. I have also had good feedback. And according to the stats 300 people have read my blogs. I don’t know quite how, or if this is even accurate, but that’s what the stats say. Anyway, writing is therapeutic for me. That’s why there is a new type of mental health recovery programme which implies that if you start up a new hobby you’ll feel better. If you were raped as a child, you are not going to find art and all of a sudden feel great again. But I guess what they mean is the art helps ease the pain and improves self-esteem whilst time (or medication or therapy) heals the mind.
So tomorrow, like some weird detective story, I am going to cut a piece of my hair and put it in a white envelope and then a Fedex guy will come and take it to Germany. This piece of hair is going to get analysed by a German or an Israeli doctor and hopefully they will give me a plan going forward. It’s an ‘alternative way’ recommended by a friend. But it makes sense because apparently there is more information in your hair about the way you are operating than there is in your blood.
But I am also going to get a second opinion – One of the more helpful doctors from Chalfonts is also going to speak to my doctor in London to see if they can come up with anything new. The last option I have been offered is Cognitive Remediation therapy. I don’t like the last option. This is a therapy that they give to people with brain damage to see if they can find strategies to work around their problems.
I will let you know what happens.