7th September 2018 43. Being Busy – part 2

I have been busy of late.  I now have a job coach (through HertsMindNetwork) for people with disabilities.  He’s helping me reinvent myself as a freelance writer and together we have created a separate website with a portfolio of all my writing work  – sharonrosswrites.com.  He’s also funded me to go on some courses.  One of them was called ‘Writing for pleasure and profit’ – the tutor was amazing and said that to get an article published all you have to do was pitch your idea to an editor in a couple of sentences and then say a couple of sentences about yourself.  I had, for some time been thinking about writing an article about a Jewish approach to mental health but the course really gave me the impetus and confidence to share my ideas.  I wrote an email to the Jewish Chronicle pitching my idea and hey presto a few weeks later ‘How Judaism could do more to acknowledge mental health’ was published. I’ve also gone on a course about how to get a book published through an agent (ie not self-publishing) in the hope that one day I can publish this blog.  The conclusion of the course – writing a book is one task but getting a book published is a quite separate activity that takes a lot of hard work and even if you do get published you probably won’t be able to earn a living from it.

I’ve also found someone who is trying to help me organise myself and my family.  To be honest, it seems like a lost cause.  I now have a laminated meal planner on my kitchen cupboard with pictures of all the meals that we are supposed to eat on each day of the week – but I never ‘see’ the planner.  I know theoretically it is there, but I just am not aware of it when I’m standing in the kitchen trying to work out what we should have for dinner. Nevertheless, the two of us are persevering, in the hope that we find one strategy that will make a difference.

It’s also been the summer holidays and I’ve had three growing children to occupy.  We’ve got through it and that is some sort of achievement. Still with all this and making bespoke meals for myself every day on the ketogenic diet (I celebrate my one year on the diet in a couple of weeks!), and with the up and coming Jewish festival season, I don’t feel busy.  After analyzing what other people say they think about when they feel busy I have concluded that feeling busy involves proactively thinking ahead at the tasks that you need to do to achieve your goals; problem solving when difficulties arise; breaking down large tasks into smaller ones and also getting anxious as to whether you can meet your targets.  But I live I live in a fog. I don’t think these things – I just do exactly what I need to do when I need to do it and I get stuff done.  Although, some people crave for a world with little anxiety, in practice it’s no fun at all. However, despite my internal lack of busy thoughts I do realise that slowly, slowly I am making progress.  My life is somehow moving on.

On the medical front things are also moving forward – although not in the direction that I expected.  I tried the CBD oil for three months (in the end not from the naturopath but from a well-known brand that has a reputation for treating epilepsy). I had not noticed any differences in my cognitive function but I was still hopeful.  ‘What if,’ I thought to myself ‘the CBD oil was changing the electrical activity in my brain but because I am taking the anti-epileptic drugs, which in some way disinhibit my brain functioning, I don’t notice any improvement the oil was making.’  So, I had an EEG and the results – no change in my epileptiform activity after being on the CBD oil.  No change at all.

I spoke to my neurologist after reading the EEG report.  ‘Is there anything else you could do for me?’ I asked.  ‘No’, she replied honestly.  ‘What about medical marijuana?’ I asked.  ‘As you know the UK government has now set up a special panel, where on a case-by-case basis they will consider giving a licence to prescribe this drug.  Do you think that this panel would consider that I have a good case for a licence?’  ‘It is unlikely,’ she said.  ‘There is evidence that medical marijuana can treat ethe epilepsies Lennox-Gastaut syndrome and Dravet syndrome[1] but there is not enough evidence to say it will treat your type of epilepsy.  I think it is unlikely that they will grant you a licence.  However, if you would like I can refer you to the professor at the hospital who specialises in medical marijuana to get a second opinion.’  ‘Ok,’ I said. But I realised that she was probably right in what she was saying.  The panel would probably not grant me a licence – there just isn’t enough evidence that it would work for me at the moment (see endourpain.org for details of the process of granting licenses).

But as you might have realised, I’m not one to give up easily.  My motto has been – if something doesn’t work – try something else.  But I am slowly getting to the very bottom of the list of available alternative treatments.  Nevertheless, it’s still worth continuing to see if I can find a solution to my problems.  So – my next treatment is neurofeedback.  I found out about it on a website about alternative treatments for epilepsy. There is some research evidence to say that it works but the reason why this modern gal knows that I am really hitting the bottom treatments available is because there are very few Facebook groups about neurofeedback, and the ones that are there are not very active.

As I understand it in a neurofeedback session the clinician firstly takes an advanced type of EEG to understand the brain’s electrical activity.  The patient is then set ‘training targets’  – ie areas of my brain that could do with improvement. The treatment will involve watching a computer game or continuous movie stream and, just like Pavlov’s dog, when my brain’s activity is meeting those targets, the patient will start winning the game or will watch the movie continuously.  When the brain activity drifts from these targets the patient will lose the game or the movie will be disrupted.  Over many sessions (which can be 2-3 per week), the theory is, the brain will begin to regulate itself (The centre I am going to also offers biofeedback and non-invasive brain stimulation and I will let you know more about these if I am given these treatments). Does all this sound a bit whacky?  No more whacky than putting a chemical pill in your mouth or getting a stranger to open up your brain and fiddle around with its insides.  No-one really knows how the brain works – and sometimes you just have to do things a little ‘outside the box’ to get the desired result.

So just after the Jewish New Year, I will start a new journey, of I hope (and pray) renewal.  It will keep me busy.  I will let you know what happens.

Happy new year and well over the fast to all those who celebrate.

[1] https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsy

33. 14th September 2017 – The New Year

Unlike secular self-improvement guides on self- improvement, which focus on learning new skills, increasing monetary wealth and setting targets the Jewish way focuses on middot – personal characteristics.  This way says that to improve ourselves firstly we must become aware of who we are, our strengths and our weaknesses.  We all have good traits such as being generous or hospitable.  But to improve we must focus on our weaknesses. If your weakness is that you are impatient, it would take a lot of energy and effort to try to be even a tiny weeny bit less impatient, but that’s what you should do, if your weakness was that you were always late then getting to one place on time might seem like an enormous obstacle but you should try it.  You won’t earn more money for making this sort of change but in Jewish terms you have achieved something absolutely huge and it is even said that perfecting just one of these character traits is the reason for the existence of humankind[1].

In Jewish tradition there is no better time to focus on middot than Rosh Hashana – the Jewish New Year (which falls next Thursday and Friday).  Thus, in Judaism, a new year’s resolution – to work on a particular middah (the singular of middot) – is not something superficial, but if thought about seriously, and over time and with sincerity and effort worked upon, can invoke real change in a person.

In theory I think this this method of self-improvement sounds great – self-depreciation is all too easy but then so is keeping to the same behaviour patterns year after year – so picking on the one middah that needs working on the most does seem like a sensible way to improve yourself. However, this year I have decided to take a break and not make any effort in improving myself at all (not that I did very well at it before).  I have decided that I am too ill to make such changes.  I think I do quite well to get out of bed, get my children to school in clean clothes, give them some sort of dinner and get them to bed (in a completely chaotic sort of way).  If I tried to give myself any other target I would surely fail, so what’s the point?  This isn’t because I am too lazy or have had enough of religion, it’s just that I’m too exhausted.  I don’t have the energy to self-improve. And looking around I can see that there are other people that might feel the same way as me – those living with cancer (and their spouse who is a full time carer); those who are chronically depressed or have dementia or for whatever reason life just seems to be a bit too much.  Surely Judaism should give me and these people a bit of a let our clause for the New Year?

However, having done a quick scan of Jewish law I have decided that there are two reasons for the get-out clause I and many others need not try to self- improve this year. The first is that I am ill and the Jewish law can be very lenient on those are ill (for instance if you need to use a car to go hospital,  because you are ill, on the Sabbath- a day that you normally wouldn’t be able to drive – then you can[2]).  And the second reason why I believe that I and many others who are ill, who are full time carers or who are generally exhausted and life-is-too-much don’t have to try at self-improvement is because that we are already expending all our energy  trying to, in whatever way, make life just a tinsy wincey better for ourselves minute-by-minute day-in-day out. Day after day I

write letters and phone doctors in the hope that I will achieve full health and this is a huge challenge.  Each ill person is on a different journey and faces different challenges but they are all hard and require extreme effort. In this way surely I am along with the other exhausted-life-is-too-much people surely acting in the best of Jewish traditions of self-improvement – of meeting an internal struggle straight on and day-by-day trying very slowly but steadily to overcome it.

Alternative therapy

I’m up for any crack pot idea if I think it will help me get better.  You name it, I’ve tried it – hair analysis, drama therapy, sacro-cranial therapy, cognitive analytical therapy and soon a new diet.  This week someone who I very much respect suggested that I went for some free alternative therapy which involved a very limited time commitment.  I was very much up for it. And so, in the spirit of self-improvement, this week I went to see a  Very Important Rebbe. For those of you that don’t know a Rebbe is a rabbi who has had a job promotion – he’s a rabbi and then some.  People seek a Rebbe’s advice because he’s on a higher spiritual plane than us mere mortals.  And I have to say, I was impressed with my visit. The Rebbe listened very carefully to what I had to say, gave me a blessing and a short regular task to carry out.  I actually thought the task was a lot more useful than the many tasks that cognitive therapists have suggested over the years and I truly felt blessed from his very sincere and heartfelt blessing. I don’t know if the visit will have any influence on whether I get better or not but as I said it didn’t cost anything and no harm done. So Sharon’s assessment on visiting a Rebbe: an alternative therapy definitely worth trying out.

 

PS  Happy tenth English birthday to my lovely daughter Gabriella, whose Hebrew birthday is the second day of Rosh Hashanah.  I don’t know if you will ever read this, but if you do you probably won’t be ten and it won’t be your birthday but I just I just want you to know that I wanted you to have a happy birthday.

PPS The Rosh Hashanah self-improvement thing is obviously a pretty hard thing to achieve many, if not most, Jewish people that I meet do not try at it.  That’s because it’s hard, they think that they might fail and maybe they will. And I believe that a compassionate all-knowing god understands that.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] Shlah – Leviticus 1:18

[2] There are various law surrounding how you would use a car on the Sabbath if you are ill, so check them out – by speaking to a rabbi or Jewish person educated to a high level in Jewish law, if you think you will need to do this or if you’re just nosey. or Jewish person educated to a high level in Jewish law.

16. 2nd October 2016 – The Days of Awe

This evening the Jewish people begin The Days of Awe.  In the previous Jewish month of Ellul we started to reflect upon our behaviour and ask others for forgiveness. Tonight – the start of the Jewish new year – Rosh Hashanah – we intensify that process by asking Hashem – God – God for that forgiveness and promising to change and finally next Wednesday on  the fast day of Yom Kippur – The Day of Atonement – Hashem makes a judgement on us and we pray that She will respond positively and we will be inscribed in the Book of Life.

This year, through a period of self-reflection and self-awareness I have discovered that I am not good at keeping promises – to make a promise you need to have a memory – to remember the promise that you made – and also to process that promise – so that it turns into action.  However, surely I am not alone at finding promises hard to keep –  but maybe Hashem understands this difficulty which is why She gives us a new opportunity every year (and indeed every day) to start again.

But the first step towards renewal to ask for forgiveness and that I can do.  I first wrote this blog because I started to realise that my behaviour was a bit odd and I thought that everyone around me was noticing – ‘they must think I’m stupid,’ I thought.  And now I realise that very few people, if any, around me were judging me – they just accepted me for who I was.  And so I want to ask those readers that know me for forgiveness, because I judged you too harshly in thinking that you were judging me.

I used to get amused when a driver would give me expletives when I didn’t put my hand up to say thank you when they stopped for me to cross a road. I really didn’t understand it. ‘They did the good thing,’ I would say to myself ‘they stopped driving when no law told them that they had to – why don’t they have the satisfaction of just knowing  that they did a good thing, they shouldn’t need a thank you for doing a mitzvah – a good thing, – they should just do it for the sake of the mitzvah’.  But now I realise that the reason I didn’t say thank you was because my awareness levels are limited and therefore their good act went by without me noticing.  In this situation I was judging the drivers by thinking that they were angry and rude and they were judging me by thinking I was ungrateful.

A wise person I know told me that when you get angry with someone else the anger usually more about what is happening inside of you than about what the other person is doing.  And that has to be true. My issue with the driver of the car was actually about the fact that I hadn’t noticed that they had stopped for me and I don’t know why the other drivers got so angry, but that isn’t my concern – that’s theirs.  And this year, if I remember, I will try not to judge angry drivers and everyone else for all the weird and wonderful things that they do that frustrate or annoy me.  It is only Hashem who can truly judge us after all.

Wishing all my Jewish readers and happy and healthy (both physical and mentally\ spiritually) new year and well over the fast.

 

In other news

When I started writing this blog I didn’t think that what was going on in my head was unusual – I thought it would be quite simple to fix.  As I said I wanted to use this blog as a forum to explain my behaviour and to show people that mental health issues can have just as much impact on the quality of a person’s life as physical ones.  However after seeing quite a few more doctors and perusing many Facebook groups I now realise that my condition is quite rare and it’s going to take a special type of doctor to help me.  I thought I had found my Pot of Gold doctor, who specialised in in my new diagnosis – a dissociative disorder, but it turns out that he is retired and is only taking legal cases.  My hunt for a good quality of life is now going abroad (after all – as any introductory self-help book will tell you – a good quality of life is not about how much money you earn but about what is going on inside your head).  If anyone in another country knows someone who knows someone who might know something about cognition and epilepsy, please let me know. I don’t mind if it turns out to be a dead end – I have had many of those before.  I do have a lead to someone abroad  who seems very well qualified but he is hard to get hold of……

 

PS As I explained tonight we start the Jewish season of lots of festivals culminating with Simchat Torah on 25th October.  Since I am not being paid for these blogs during this period my blog writing will not be as regular as normal, and I am asking you not to judge me too harshly for that xxx