26. 10th May 2017 – The kindness of strangers

  1. 10th May 2017 – The kindness of strangers

About a month or so I was standing at a bus stop outside Tesco and started chatting to an old lady ‘I need to go to the council offices,’ she said.  ‘Is it far?’ ‘No, I said – you could walk’.  But, my directions were a bit vague and I sounded uncertain and then she said ‘I think I’ll wait. I’ve only just lost my licence because I find walking difficult but it is a pain getting the bus everywhere.’  I told her that I also couldn’t drive and it was something that you just got used to. I said that the reason why I couldn’t drive was because I had epilepsy.  She sounded startled because she said that ‘I looked normal’. And I thought it was good that she now knew that people with epilepsy just looked normal.  ‘I do get very confused a lot’, I said, ‘That’s why I don’t drive.  It would be dangerous for me to drive’.

And as we got talking she told me a little about herself.  Every morning, she said, she got up and went and had breakfast at the local bistro because it was important for her to go and talk to someone every day.  And, although I felt slightly sorry that she had to do this just to get company, I also felt kind of proud of her, because she had found a strategy to deal with her loneliness that worked for her.  Just as she had learnt something about epilepsy, I had learnt something about the courage it takes to be old and deal with life on a day to day basis. I suggested that she looked up the University of the Third Age, because my grandmother-in-law had loved it and they had lots of interesting activities and she seemed to like that idea.  The bus came and I told her that the bus was going to the council offices.  But as we sat down, I realised that although it was the right bus for me, it wasn’t the right bus for her – the bus was going in the opposite direction for her.  I apologised profusely and felt awful.  And she said, ‘Don’t worry, it’s OK,’ and off she got at the next stop.  And do, you know I think it was OK.  I don’t think she would have been angry at me for making her go on the bus in the wrong direction.  Although she was a stranger, I knew that she had come to be a friend and that she could just accept that I had meant no harm.

Last week there was an alarming post on a Facebook support group I am on ‘ Please can someone speak to me, I’m feeling really down’. Up went one response ‘I’m here for you hun, if you want to talk’ and another ‘What’s up?’ and I pipped in ,‘Are you OK?’ But there was no response.  Only silence.  People started to get a bit panicky – ‘We are getting worried about you,’ said not one but a few people.   All in all there were about 17 responses to this post in 24 hours until finally a response came ‘ Sorry, for all the worry, I’m OK.  I had turned off my phone and was feeling really tired.’

We are taught and we teach our children to be so wary of strangers that we forget that humanity would not survive without the kindness of strangers.  Whether it’s giving a reassuring smile to someone walking down the street to who looks like they are having a hard time; giving directions to someone who is lost; picking up a scarf on the pavement and putting it on the wall so that the owner might find it or putting money in a charity box so that someone else can be helped, but you don’t know where – all these things can make a huge difference to someone’s life.   A lot can be achieved by the kindness of strangers and we should proudly acknowledge that when we give and receive it so that we become more aware that humanity is much better than we are otherwise told to believe.

 

 

 

In other news

I have started some new meds but I am still on the waiting list for the ketogenic diet. The medication says to call your doctor if you come out in a rash – and I am now awaiting a callback from my doctor because that is exactly what has happened to me.  It doesn’t look good. This week I also went to a neuropsychologist to get assessed as part of my neurorehabilitation programme.  Last week I also went to the neuropsychologist to be assessed.  Next week I will also go to get assessed.  I don’t not fit in a box, the neuropsychologist told me so altogether it will take three weeks for me to be assessed. She is trying to understand if my problems are more psychological or neurological and on the basis of her conclusions she will ‘prescribe’ be appropriate treatment.

20. 13th November 2016 – And Now I am 40

And now I am 40

Today is my 40th birthday.  I was going to keep it a secret, but what with Facebook and my newly found desire to tell everybody what is going on in my mind, it doesn’t seem possible.

I really wasn’t looking forward to my birthday.  Forty seems like such a milestone and here is a great amount of pressure attached to it.  If I lived in Perfect Land, when I turned 40 and evaluated my life to date, I would feel proud and humbled at my achievements and with renewed vigour I would see ahead of me green pastures and a pleasant land.  I don’t want to live in Perfect Land – it seems a bit dull.  But in Reality as I turn forty I see behind me a life lost and in front an unknown future.  But at least I know that I am not alone in dreading a milestone birthdays – plenty of people do (look at Rachel’s 30th birthday in Friends!) and there is still time in my unknown future to find a path towards a greenish and pleasant land with some dead flowers – I don’t want Perfect Land , after all.

There are two ideas I know about being 40 – firstly – ‘life begins at 40’ and secondly at 40 you are allowed to start learning the Jewish mystical philosophy of kabbalah. In fact both ideas point to the same thing – at 40 you can consolidate your knowledge of life and begin to see the world differently.

As I turn 40 I do see the world differently. I used to judge people – because their child was rude, because they were a hypochondriac or because they very easily got into arguments with others. But now I see that it is not useful or helpful and that everyone has their own problems and I don’t know why they act as they do.  I only know how I act as I do. So if I haven’t achieved everything I had wanted to at this milestone age, never mind, there is always another day, but at least I know that at this inconsequential age in my life I have turned a small corner in seeing the world a little bit differently.

In other news

I have now got much more clarity about my diagnosis.  I have been diagnosed with a dissociative disorder and my symptoms are mainly brain fog.  However, it might be that the brain fog is caused by absence seizures in which case my disorder is Non-Epileptic Attack disorder (NEAD) (a horrible name). Unlike clonic-tonic or partial complex seizures absence seizures are so short that sometimes not even the person who is having them is aware of them.  Both dissociative disorder and NEAD sit under the general umbrella category of a Functional Neurological Disorder (FND) – ‘a disorder where symptoms are of apparent neurological origin but which current models struggle to explain psychologically or organically’ (www.fndhope.org).  For some people the disorder is a reaction to stress or a traumatic event (eg being raped, seeing terror).  However, only 13% of patients successfully respond to therapy as a treatment – and I think I would be one of the 87% who don’t because I do not feel anxious and haven’t had major trauma in my life.

Unfortunately to date so called non-epileptic seizures have received a bad reputation.  Some doctors think that they are a sign of patients ‘putting it on’.  However, I can safely assure you that nobody would choose to lose awareness as well as control of their body and suffer immense brain fog and tiredness after the event ie have a seizure.  Especially if these seizures were happening several times a day and doctors could not find a medication or surgery that would help and the patient  didn’t know what was triggering them.

My case is slightly complicated by the fact that I have epilepsy.   EEG’s show that I have epileptiform activity (susceptibility to seizures) but I am not having seizures.  And therefore it might be that the activity alone is causing me cognitive difficulties. So therefore I am going to start next week a new anti-epileptic drug next week to see if that helps. If that doesn’t work I will try a ketogenic diet which is proven to help some people with epilepsy. Although, with my brain fog, I know that this will be difficult for me, there is more evidence that this works to control epilepsy than a neuro-gym or a dementia drug – which I don’t think I will be prescribed anyway.

As I said last week, I am going to take a break from blog writing for the moment.  I have seen enough doctors for a life time and now all I can do is wait and see if this drug makes a difference.  But I will keep you updated every now and then on my journey.

 

11. 12th August 2016 On Miracles

On miracles

So the miracle that I wanted to happen didn’t happen – I didn’t get to see the doctor I wanted to see  and, rather grudgingly, I have to accept that G-d works in mysterious ways, of which I am never going to understand.

However,  another very important miracle did happen to me this week and whilst thinking about miracles I have concluded that there are three reactions that people, including myself,  have towards them (I calls these ‘attitudes to gratitude’).  The first is the Ferrari type reaction. And this was the reaction I had to my miracle this week. My miracle was this – my daughter got potty trained.  Let’s face it with my organisational skills and the memory of a goldfish potty training was never going to happen.  But my daughter was ready and all she really needed was a little bit of help.  So piff puff poof – the miracle happened and someone I didn’t know well (and not someone who knew my problems) , but who was looking after her,  was offered to train her.  Now miracles don’t just happen by themselves – the sea would not have split unless Moses had actually got there – I had to find this person and this person and this person had to offer.  So I thank G-d, from the bottom of my heart, that together Her help, my help and the stranger’s help my daughter has now  been potty trained.

The second attitude to gratitude is this:- thanking without thinking.  A lot of people do this – whether they are religious or not eg they say ‘My father recovered from his operation, thank G-d’ ‘My daughter is going to get married, thank G-d’ ‘It’s a miracle that you ever got here considering the traffic was so bad’.  In Judaism there are plenty of opportunities to thank without thinking – you can say a prayer before and after you eat food, a prayer after seeing a rainbow, a prayer when you wake up and before you go to sleep and another most excruciatingly after you go to the toilet (NB – you are not allowed to say it in the toilet – you have to come outside and then tell everyone, by the fact that you are whispering the rather long prayer , that you have done a number one or number two). But for me most of the time (and I’m sure for a lot of other people) these types of thank yous are superficial – they are just a tone of phrase. It’s like saying thank you to your mum for making you a cup of tea – you don’t really mean ‘Thank you mum. You have gone to an awful lot of effort – firstly you thought to ask me if I was thirsty then you switched on the kettle and got out the mug that I like, the teabag, the milk and the sugar  etc etc’ .Thanking without thinking is often just being polite.

And then there is the third attitude to gratitude – Nothing. It’s as if I didn’t say thank you for the tea my mum made or I didn’t think how ‘lucky’ I was that my daughter got potty trained. Even if I didn’t believe in G-d, surely it is polite just to be thankful for something inconsequential or very important, to give me a sense that I am not in control of everything and something else has given me a good turn.

In noticing these three attitudes I realise that the preferred option is Ferrari – to be genuinely grateful for seemingly inconsequential (ie to come out of the toilet and to be genuinely grateful for the ability to function as you have and to meaningful say a prayer or a little thank you to the Power that Exists in the World) and larger acts (that my daughter has been potty trained).  However, thanking without thinking, to some extent does the trick but not being grateful ever for absolutely anything is probably going to make you miserable your whole life. So even in my wholly unpleasant situation, I am trying to have the Ferrari attitude to gratitude.  It keeps me going in difficult times.

In other news – there isn’t much I am afraid.  I was hopeful that the ‘It isn’t what you know but who you know’ approach might work, since someone I knew, knew someone else who knew someone else who was very important in the world of epilepsy.  However all that person can do is refer me to the person that I already have an appointment with in mid-October.  This October doctor is apparently the only person in the country that can help me (if anyone knows anyone who knows anyone who knows someone who knows about cognition/ executive functioning and epilepsy/ neurological diseases in this country or abroad please let me know).  So whilst I am waiting for my appointment and if I get my act together I am going to go to a naturopathic pharmacy and get the ‘medication’ that the naturopathic doctor has prescribed for me and see if that helps me.

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And for those observing Tisha B’av a little story – My son wants to be a builder when he grows up.  His biggest ambition is to repair the Western Wall because it has holes in it, where people put their ‘wishes’. He is very sad about the fact that it is broken.  My son is hoping that with his skills, and G-d’s help it will be rebuilt speedily within his days.

https://knightstemplarinternational.com/2017/10/miracles/