Over the past year and a half I have gained quite a penchant for Facebook communities that have helped me understand my condition. I have felt connected to people I have never seen and, at times, these people have given me motivation to continue and have helped me search for solutions where doctors have told me there were none. I have felt a deep sense of belonging to these communities – I have felt welcome whatever my mood or questions I may have had. But in finding these communities I have forgotten, or more truthfully, taken for granted – a community that means more to be than Facebook communities – a face-to-face community (aka – the Borehamwood Jewish Community).
I am very privileged to belong to this community where I feel everyone, no whatever who they are, is welcome. It’s not perfect (what online or face-to-face community is?) but it is where I feel at home and I realise that, especially in today’s disconnected age, it something that I should be very grateful for. I used to think that to really feel part of a community you needed to give to it – to organise activities, to make meals for people that are sick, be on the synagogue board, to run children services – after all what you give in you get out – but after a while of trying these things I realised that I just couldn’t give in this way – because of my illness I feel distanced from my actions and therefore when I give with my time I just don’t feel a sense of satisfaction and just can’t somehow give in the way that I want to (People that know me might say that I do give to the community but I don’t feel that inside). And so I began to think that because I couldn’t give to the community perhaps I wasn’t so much a part of it as I wanted to be.
However, a few weeks ago in synagogue the weekly biblical reading was called ‘Vayakhel’ and it made me re-evaluate my role in the Borehamwood Jewish community. Vayakhel literally means ‘and they assembled’ – the reading tells the story of the Jewish people coming together to listen to the laws of building the tabernacle. They gather and they are given a task to do and each person has a different task, a different role to play. The word –vayakhel has the same route as the word ‘Kehilliah’ – a community. I had always thought that in a kehillah there were some people that were more important than others – some had more friends, some had more money and some contributed more in terms of their time. However, I have learnt that in the true sense of the word kehillah these people are no more a part of the kehillah, the community, than anyone else.
Last November I went with my children to the local Remembrance Sunday parade. Together with my son’s beaver troupe and other organisations we gathered by the local war memorial and fell silent for two minutes to remember those that had fallen and for the first time that I can remember I felt part of a different community – the Borehamwood community (ie not just the Jewish one) – it’s a shame that it had to take such an occasion to make me feel that way but just the act of gathering seemed to do it. Each person was important – the rabbi, the priest, the major, the beaver leader, my son the beaver and me the mother just watching with her daughters at her side. Without each component the gathering would not have had the same atmosphere. And so I have concluded that all different types of people are equal members of a community, whether they have many friends or none, whether they are rich or poor, give in time to the community or not, well or unwell, young or old and that I should feel privileged that I have such a community and, even if I am not contributing to it in the way that I would like, I should feel that I am playing an important role just by simply gathering in a place and being counted.
In medical news
There are other things I realise that I have forgotten. Since I start the ketogenic diet I had forgotten what it was like to feel really drowsy and I had forgotten what it was like to feel suicidal. Last week I tried to eat a few more carbs and a bit less fat in an attempt to reduce the side effects that I was getting from the diet. I ate a little more carrots and peppers and a little less mayo in my meals. But when I went to the cinema I felt myself slowly becoming drowsy – not in a tired way – but in a I’m totally out of it way and I remembered feeling that way before I was on the diet and I felt it quite a lot. And then I had a little suicidal thought. It was only a little one, not the barrage of ‘I want to kill myself’ every five minutes that I used to have, but it was enough. I didn’t want to go through that again – after all I have three children who need me. So I have decided to stay on the diet, for now at least, even though words keep on coming out of my mouth wrongly (this week I said a chocolate mousse with grated crated on the top tasted really nice, when I meant to say grated chocolate) and my memory might be getting worse.
Also this week I spoke to my Nice Neurologist over the phone (they will speak to you between appointments if you are persistent) and she said that there was no need for me to have a 24 hour EEG again, because I am having on average eight spikes every hour, each on lasting up to a second and thus a one hour EEG should collect all the necessary data. ‘So, OK,’ I’m thinking, ‘I’m not having seizures but nevertheless there are eight things that are putting stress on my brain every hour, which are not happening in other people’s brains’. After having this conversation, I went to look at my report for my video-EEG in July 2016, when I started writing this blog, and I noticed what might be a slight administrative error (ie saying there were seven spikes during the daytime rather than seven per hour). Nice Neurologist said that she would double check the original data because I would like to know if things have remained the same since July 2016 or got worse.
Next week, just before the Jewish festival of freedom, Passover, begins I am going to the naturopath to start cbdboil treatment. I pray that it gives me the freedom from my (lack of) thoughts that I am so desperate to obtain.
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