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

14. 18th September 2016 – Self-Awareness

The purpose of psychotherapy, I am told, is to increase self-awareness – by becoming aware of who you are – you can begin to be proud of your strengths and work on your weaknesses.  And in becoming self-aware you become more accepting of yourself and thus are more self-assured and able to taken on the challenges that you face in life.

I never understood this process before but now I do – and I wanted to tell you that I have found that this process works.  It’s actually quite revolutionary and exciting!!!  Of course, you don’t have to go into psychotherapy to increase your self-awareness – I wise man I know once suggested that for a week I could keep track of those things which consistently crop up, which were difficult for me, and spot the pattern or common denominator in all of these situations. And in doing so I would find out what I needed to work on in life (Of course, I can’t keep a track of anything, so I didn’t do it!)

But by writing this blog I have dramatically increased my self-awareness. I have managed to articulate to myself (and others) that I have difficulty with processing information, with memory, with problem solving and with most cognitive functions.  But in doing so I have realised that none of this is my fault.  It is quite simply out of my control.  So if it takes me a long time to write a blog, to make dinner and I can’t quite ever understand what is going on in my diary, that’s OK. I don’t need to think I am stupid or be angry with myself.

Through this new understanding of myself I have come to learn the extent to which these difficulties are impacting on my life and thus have been very confident in my decision to seek medical help.  And for people with an undiagnosed neurological conditions the process of self-awareness should send them straight to a professional’s door-  a person who realises that they have an attention deficit (ie ADHD), periods of elation and also depression (ie bipolar), or that they have difficulty reading (ie dyslexia) and so on cannot work on their weaknesses by themselves – they need help (we all do from time to time). But of course, everyone can be healed through this process of self-awareness – if a person begins to realise that they are impatient or aggressive or judge too quickly – everyone has something – they can start to work on these negative character traits by trying each day to not be that way (and seek a professional’s help if the character trait is getting in the way of their life in an unacceptable way).

However because I have come to a new realisation about myself I can for the first time in my life be aware of my strengths.  For example I now know that can write and I like doing it.  I am persistent (according to an epilepsy Facebook group discussion this is a common characteristic of people with epilepsy) and I do care about other people. And in becoming aware of my strengths and understanding my weakness, I am more confident about myself, who I am and what I want out of life.

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In other news

I am very excited about my appointment with my specialist neuropsychiatrist next week.  Please g-d next week I will be able to give you some news – even if it is just a ray of light at the end of a very dark tunnel. ‘Fingers crossed’, as they say or to put it another way ‘I am appealing to The Infinite Power that Exists Out There to start to give me the answers that I have been looking for. I still am not seeing any benefits from my naturopathic medicine but on the other hand – it is still worth experimenting with it.  It doesn’t cause any harm, and for some people it really helps.

13. 11th September 2016 – Parenting theories

Over the break I have carried out some extensive research into parenting theories and have come up with my top three which I would like to share with you.  The aim of this process is to discover which theory would be most useful for me to use at the moment, whilst I am going through this difficult time (NB If you decide to plagiarise this blog for an academic essay in psychology or sociology you will almost certainly fail).

Theory one – children are resilient.  Many people are telling me this one at the moment, whilst secretly being grateful that their children have a relatively ‘normal’ life. However having observed the resiliency theory in real life with my own children – there does seem to be a lot of truth to this. Children have no previous experience to fall back on so they just get up and get on with it because it all seems normal.  My children have accepted that when mum sees a bruise on their leg, she might ask them where they got it from – even though she saw them fall over and attended to the incident last week.  It is normal for them.  They cope and they just get on with the various odd things that happen around them.  Still resilience theory doesn’t really resonate with me. It seems to suggest that it’s ok to make things bad for your children because they are resilient so it doesn’t really matter anyway.

Theory two – a classical psychological interpretation – This theory states that parents screw up their children and then the children spend the rest of their lives trying to undo the damage.  This theory was propagated by Freud, Jung, Piaget, Vygotsky and the like who believed that in these formative years a child’s cognitive and emotional development is established for the rest of their life. Oh dear, I think.  This is not good.  I thought children were supposed to be resilient and what I did didn’t really matter.  It looks like my children will spend years in therapy.

As a sub-theory to this theory is the one that says – if a mother is happy then a child is happy.  For my second pregnancy I was depressed almost throughout.  And if being depressed wasn’t bad enough the whole time I was thinking ‘My unborn child is picking up all my vibes and is going to be depressed their whole life.  How can I un-depress myself?   I am a crap mum before I have even started – what chance is there for my child?’ (I later miscarried, but that’s beside the point). And what about the one in ten mums who suffer from post-natal depression – surely all of their kids aren’t screwed up?  But there must be some truth in Freud et al’s theory – my children are not oblivious to my strange behaviour and my eldest can remember when I was chronically depressed.  There must be an impact – it must shape how they make sense of the world – but does it all have to be negative and does that impact have to last a lifetime.  What happens if some miracle happens and I get better – will my kids still be screwed up because there were some difficult years?

And then there is theory three – All a parent can do is try their best.  This is the theory I am going with for now.  I always thought it was a pretty odd theory – how do I know if I am trying my best? (Does an athlete only try their hardest when they score a personal best?).  However, I have come to understand that I am trying my best.  For me making a dinner for three kids is hard work (lots of decision making, planning, use of memory etc) – sometimes the kids have had the same meal more than once a week, often they don’t get veg and the kids only generally get a drink if they ask for one.  But I know 100% I am trying my best.  And if the kids end up in therapy in years to come, I will know that I tried my hardest for them and that life if complex and even though I tried my best it doesn’t always mean that my kids will have the future that I want for them – ie good mental health, a strong sense of self, to be a mensch (a good person who helps others) after all what else is important?

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Exciting News:  My poor suffering husband (and Boris Johnson) were right – if desperate write to your MP.  My MP Oliver Dowden wrote, on his House of Commons embossed-letter-headed paper to the specialist doctor that I want to see and told him I was feeling a bit desperate and the very busy doctor has now mysteriously found space is his diary for me in two weeks time (I would like a pad of Mr Dowden’s paper.).  The natrupathic medicine is not making a difference but this week I am going to add Lithium to see if that has an impact.

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/

 

7. 18th July 2016 -Mothering whilst ill

I am not the mother I want to be, but I know that I am not alone in thinking this.

As an example of my unmotherliness, I will explain to you what happens when my children come home from school. My eight year old says, ‘I want to watch tv – where is the remote control?’  Me: Spend 20 minutes trying to find it – I feel guilty because I probably lost it. Think to self, ‘I need to make dinner.  What shall I make?  Don’t know’.  ‘What would you like for dinner?’ I ask my five year old, ‘Pasta with tuna,’ he says.  Think to self, ‘Good plan – we have plenty of time to make that.  I will go and put washing on first because I haven’t done that today.’  Go upstairs to get washing. Think to self, ‘What am I doing upstairs?’ Not sure.  See three year old taking all the wipes out of the packet. ‘Why are you making a mess? Let’s go downstairs’. Take daughter downstairs and when at the bottom think to self, ‘I forgot the washing. I will go and get it.’ Go upstairs to get washing.  Me to self, ‘Must make dinner.’  My son says, ‘I am hungry!!’  Me: Feeling guilty that I still haven’t started making dinner,  ‘Have a yoghurt’, I say (only latterly so I realise that this will mean that he will not be hungry for dinner).  Put pasta on – Not sure how much to put in saucepan so use half the packet. Put washing in the machine. Fifteen minutes later pasta is overcooked and I call children in. Elder daughter starts to put mayonnaise in tuna because she likes it with a very specific amount of mayonnaise which I don’t understand. ‘Need to clear breakfast counter,’ I think – children cannot eat from it with that much mess. My son says, ‘I will get the glasses,’ (this is his favourite job). Me to self, ‘What do I need to do now? Oh yes get – Knives AND forks and serve youngest two good on plates which will fit their meal.’ And so it goes on.

So for all of you whose meal times don’t look like this – Kol akovod (well done) – I am in awe of you (and before you suggest it – writing a list of the 25 things that need  to be done when the kids get back from school does not help).  You have the gift of memory, processing and strategic thinking.  It turns out, I realise now, that strategic thinking is not just something that management consultants do.  Almost everyone does strategic thinking as a result of processing the information around them. It helps them to be organised and make on-the-spot decisions about inconsequential things.  If you can’t strategically think and your IQ is at reasonable level – life sucks.

So I am not the mother I want to be – I want to be present with my children, to feel that in–the-moment connection, I want to be a strategic thinker who understands what is best for my children and am able to prioritise their individual needs. I want to be the solid rock that they can count on to help them along their way. But right now I can’t be that person. Neurologically it is not possible.

However, as I said, I am sure I am not alone in not being the mother I want to be.  There are probably millions of other mothers who are in my position but they just don’t announce it on Facebook! (a very silly thing to do!!!).  So for all those who are going through a tough time – whether you are, bipolar, an alcoholic, having an acrimonious divorce or have cancer –  but-really do want to be a good mother (or father), here is a list of the benefits your children can get from your imperfect situation.  Your children:

  1. Have a much better sense that life can sometimes be hard and is not always the way they want it to be.
  2. Might have to fend for themselves a little bit more than other kids. If they really want something they have to go get it themselves otherwise it might not happen.
  3. They learn sometimes they don’t get what they ask for and that is OK

And in my case, which might not, unfortunately, apply to everyone, they also:

  1. Realise that if you are open about your problems other people often show kindness

Obviously if you are going through a difficult and trying time and think this list is a load of crap then I totally get it. But if you liked the list, I’m glad it helped you.

NB I made two factual errors in last week’s blog which I would like to correct.

  1. Firstly I said that 300 people had looked at my blog. However, due to me being confused 100% of the time I got the number wrong. Nevertheless, the data implies that most of the people I know are aware of my problems.   That’s the way it should be because if I had a physical problems most of my friends would know about it.
  2. Sadly, FedEx are not taking my hair sample to Germany – it was too expensive. The idea of a man coming to pick up my hair in a white envelope and taking it all the way to Germany to be analysed for deficiencies in mineral and vitamins sounded very romantic but it was not to be. However, through Royal Mail tracking services, I can now inform you that my hair sample took the late night flight from Heathrow and is now somewhere in Germany awaiting to be taken to Hersbruck.

 

2. 4th July 2016 – Do we really have free will?

2 July 2016 – Do we really have free will / A note on staying in hospital on Shabbat

I like to think that my eldest daughter (aged 8) is mature for her age.  ‘You know sometimes’, she said to me the other day, ‘it seems to me that you just don’t think before you do things’. ‘Yes, I know’, I said ‘that’s why I am going to hospital, so the doctors can find out why that is’.  After all if when I take the drying out of the machine and some of it falls into the pile of dirty washing on the floor and then I wash both clean and dirty clothes in a new cycle and I do this time after time after time, it does look like I am not thinking.  ‘But everyone has control over their thoughts, don’t they mummy?’ she said and I said, ‘I’m not so sure’ and she went away slightly perplexed.  And even for an adult understanding that the truth is we don’t have as much free will over our thoughts and actions as we would like to think is disturbing.  I once met a woman who was beaten up by her husband whilst she was pregnant but she still went back to him.  I also met a man, suffering from obsessive compulsive disorder, previously he was studying to be a doctor, he had a wife and children who he obviously loved very much, but he fervently believed that asbestos was everywhere and couldn’t cuddle them and so slept on the floor – such was his anxiety that asbestos being could be on his bed or on his wife or children (he scrupulously cleaned the floor so he could sleep on it).  Surely if they had enough free will the woman would have left her husband and the man would get back into his bed and study to be a doctor.  Logically they knew that what they were doing didn’t make sense. But they didn’t have as much free will as they would have liked and they certainly couldn’t pull themselves together or snap right out of it – just like I can’t snap right out of my mental state.

 

Samuel Landau, a rabbi, wrote an article about neuroscience in the Jewish Chronicle a few weeks ago.  Drawing from Rabbi Dessler he argued that we are all at different points on some sort of neuropsychological ladder or axis and we can use our internal resources (and maybe some drugs and whatever other help we need) to ascend or descend it. But we should remember that we are all at a different point to begin with.

Thus for some people it is genuinely harder to pass that exam, to speak kindly about other people or to not take advantage of those weaker than themselves. And for me, I start at a place of impaired cognition and I realise that life has been genuinely more difficult for me than it has for some others.  And sometimes, even trying harder, has not worked. But we all start in different places and I, as many people do, will be trying to use the internal resources that I have to ascend this ladder.

 

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A note about staying in hospital on Shabbat:

 

As an observant Jew on Shabbat I cannot use electricity or my mobile phone, use light switches and there is an endless list of other things as well (eg no harvesting of crops). We also have special rituals like women lighting candles to bring in shabbat and saying special prayers over wine. So it has just been Shabbat and over this period I have, more or less I kept to those things.  It was very tempting not to use the electric button to put the hospital bed in a more upright position, but I did not.  However, I am not a saint and I did watch Pretty Woman in the lounge because it was already on and there wasn’t much else to do (strictly speaking this is OK because I didn’t turn on the tv but it isn’t what we would call ‘in the spirit of Shabbat’).  However the main difference about Shabbat in hospital and Shabbat at home is that in hospital it does not have the same qualitative feel, the same awareness that you have put all things aside and are dedicated to spending time with your family and friends, reconnecting and refreshing (although obviously if you feel like complete shit whether at home or in hospital you are still going to feel like complete shit on Shabbat – it isn’t a miracle cure).  The saddest thing for me was that I was unable to light candles.  The hospital were not keen on the idea(!!!) so I asked a rabbi what I could do instead and he said I could switch on an effervescent lamp and say the blessing on that. I did this but of course it wasn’t the same.  Until tomorrow xx

 

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1. July 1st 2016 – epilepsy and me

My eight year old daughter, Gabriella, had choreographed a dance routine with her friend for her school show, ‘Year 3’s got talent’.  They had rehearsed at every available opportunity – at break-time, during playdates and at home by themselves.  They had chosen their own music, decided what they were going to wear and how they were going to do their hair.  I was very proud.  I was more than proud. Gabriella had worked together with a friend in a dedicated way to create something original.  But as I sat there waiting for the show to begin I knew that I wasn’t going to view the dance routine in the same way as the other parents.  Throughout the routine I was asking myself, ‘What aspect of the dance should I be looking at?’, ‘How do I tell whether this part of the dance routine is good or not?’, ‘Is it in time?’, ‘Should I be looking at my daughter’s friend now or should I be looking at my daughter?’  I knew that there was nothing I could do to answer these questions. My mind is a permanent fog.  And then before I knew it – quite literally – the dance had finished.  The mother of Gabriella’s friend had already got up and congratulated her daughter with a cuddle.  I was slow on the uptake and another mother congratulated my daughter before me (not that I blame the other mother – I was slow). ‘Thank G-d I am going to hospital,’ I thought, ‘so that the doctors can understand what is happening with my brain’.  The experience of watching the show was simply too painful for me and I desperately wanted to sort it out.

So here I am at the epilepsy hospital so that they can carry out an intensive assessment.  The theory is that I might be having lots of seizures, where I lose consciousness for a second or two, and I am not even aware of them. This is the hidden face of epilepsy.  As I am learning epilepsy isn’t just about having very obvious clonic tonic seizures which look dreadful, and can cause those having one to injury themselves.  It is also about small millisecond seizures that the person having them might not be aware of.  It is also what happens in between seizures – the epileptiform activity and how that impacts on cognitive function.  This epileptiform activity certainly seems to be impacting on mine – for example I mostly don’t process information (eg my three year old had decided to take off her wet nappy – I also saw that next to the nappy was a pool of water but I didn’t connect the two pieces of information – I didn’t think that the water was urine I thought that it was water), and my memory is very poor (eg if my husband talks about our holiday last year I can remember the fact that we went on holiday but the name of the resort or the details of a particularly day trip that we went on escape me).  But when talking to me no-one would know the difficulties I am facing every minute of the day – indeed this is the hidden face of all mental health illnesses because although I am in immense pain no one (apart from you because I have explained it to you) knows.

However, you will be pleased to know that I am doing 100% better than I was last year when I watched my four year old son perform the Gruffalo show at nursery.  My cognitive function was just as impaired then but I didn’t know that this was the problem.  ‘Why does this show feel boring?’ I asked myself.  ‘I just don’t want to be here’ ‘All the other mums seem to really enjoy watching their child in the show – why can’t I?’ ‘Why am I always like this?’ ‘Oh I think I will just go home and kill myself’.

So starting on Monday, I am going to be in a hospital room for five days and I will not be allowed to come out of it.  I will be wearing sensors attached to my head to measure brain activity, using an EEG, and I will be videoed from all angles.  The idea is that doctors will be able to spot on the video when I am having seizures and measure my brain activity at that point.  And, please G-d, on the basis of those results they will be able to make recommendations as to how to treat my epilepsy.

I will try and write a blog every day – I will be seriously bored (but of course the news is always a drama to watch these days, what with Brexit, the British elections, general political turmoil and of course there is always Wimbledon).  But just to let you know that I might not because I might forget to write.

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