Moving On

Now that I’ve finished reading the Brexit report and I’m fixed (so that the constant videos of the last moments of my mum’s life aren’t playing behind my eyes) it’s time to ‘move on’ and so I’m going to write some blogs that deal with uncomfortable truths about death, bereavement and grief. Today’s blog is about support.

After I’d written the fixed blog people told me their stories and said that it had been helpful to read. Other people had told me that they’d sent it to friends who were struggling with grief, or madness.
I was surprised by all of this, as I thought my experience was pretty unique. Obviously, I hadn’t given the details of those final images but my descriptions of how I acted with PTSD resonated with many people.

When life is difficult for someone the people around them want to help. It is hard to know how to help and even harder to know if you are able to.

The truth is that there are no rules. A psychological study has shown that there is no right thing to say https://doi.org/10.1080/01973533.2018.1509341  Things that helped me might not help someone else but I’m going to tell you  just in case those things are universal.

On Thursday I’m taking some friends out for dinner who were very supportive. We are going to celebrate my being fixed with sparkles, bubbles and food. Looking back, I realise how lucky I am, to have so many friends and family who care and did exactly the right thing for me. And also how lucky I am that there were so many others who tried to help and failed. I think of the Long Suffering Husband who failed at least 30% of the time but never gave up.

Most of the time, for me, when people failed it was because they were trying too hard. They wanted my pain to stop. They couldn’t understand it but thought they could. As soon as someone jumped to a conclusion I was lost. “I know exactly how you’re feeling,” they’d say and inside I would be    screaming. I think that whatever someone is going through it is totally unique and no one ever really  knows what it’s like to be inside their head.

“It’s because..” was another conversation starter that would make me curl up inside. This was terrible on two fronts. The first was that they were usually wrong but the second and more terrifying was the fear that they might get it right. When you are at your lowest and really struggling with something then the last thing you want is to be noticed.

“You should...” Oh help! This was the worst. Even if the advice that followed was good advice I generally couldn’t have heard it because it was framed in arrogance and judgement. There were bits of advice that were funny, like “You should eat more bananas.” (I’m still not sure why) and others that still hurt when I think of them now, like being told it’s time to move on.

I titled the blog ’moving’on because this is probably the least helpful thing, ever (in my opinion). In  an age where growth mindset is all the rage, resilience is taught as something you can have just by saying,  “get on with it,” and that anyone who can’t get over something is a snowflake (stupid term because snowflakes are amazing), this phrase is going to be said more often. The truth is that a person can’t always move on. I couldn’t and I am a pretty resilient person who has suddenly become a bit freaked out because the things she's always said are suddenly trendy.  Until the video images stopped playing behind my eyes there was no way of moving on. I was stuck. And even now, I am still bereaved. My parents have still died within 18 months of each other, I have still dealt with things no squeamish person should ever have to deal with and I feel forever changed. I have good days and bad days. This is normal. (I’m telling myself as much as I’m telling anyone else).

So, if people failed because they were trying too hard then would it be better that they didn’t try at all? No. No. Absolutely not. I have more respect for people who tried and got it wrong (even if I was hurt by their trying) than those who just didn’t bother. The loneliness of dealing with these issues is indescribable.

The connection between people is hard when you are struggling.  It's even harder if you are struggling with something that society doesn't like to talk about.  Death is still a big taboo, as is mental health and menopause.  Doing all three things together makes you a very difficult person to be around and you know it. 

The people who were really supportive for me didn't care about any of that.  They didn't need to talk about those things.  They just let me know that they were there.  They would swim alongside me, or invite me for coffee, or send me a text to ask how I was and be happy with my answer of 'OK'.  They talked about other things and didn't get cross if I zoned out.  They didn't hug me (that might be a personal thing).  They didn't give up. They told me their stories without assuming that mine was the same.  This, I think, is important.  Other people's experiences help you work out what you might need.  The more I heard about people's experience of grief the more I realised that I was in a different place.  A conversation with a chap in a coffee shop, however, who had been a soldier and told me about his PTSD did make me feel much less alone as did the story a dog walker told me about their mother who had never been the same after nursing their grandmother through cancer.  We should talk more about death. 

One of the things that really kept me going through the early darkest days was that every morning I would get up to a message from a friend that contained a gif of the Pope doing something strange.  It made me laugh and if someone can make you laugh when everything seems pointless then they are doing really well.

585 pages

I’ve been quiet again. Don’t panic, though I am still fixed. Apart from being a musician in the run up to Christmas I have been busy reading the 585 pages of the draft Brexit agreement.

“You are sad!” said my friend believing that I was going to be the only person to actually read it.
The truth is that while I have read every single word I can’t claim to understand it. It took me all this time to read because there was so much to look up. I didn’t even know where the South Sandwich Islands were or if there were any North Sandwich Islands (near the Falkland and I don’t think there are).

Then there was the legal language, which did get easier as it went on but all this ‘party of the first part’, ‘notwithstanding’ and ‘by way of derogation’ takes a while to tune into. Even when you are tuned in they throw foreign words in like pari-passu, which just means doing stuff at the same time on a equal footing. Oh, I’ve just seen why they used it: 585 pages of unintelligible words are quicker to write than 2000 pages that we can understand. I also have a problem reading anything financial. My brain feels like it’s going to explode as soon as there is any talk of amortising or non-amortising loans and as my brain has had a lot to cope with recently, I thought I should take it easy.

For a long while I got stuck on the conundrum of why they had left page 301 blank. I have no answers to this that don’t make me sound like a mad conspiracy theorist.

“What do you think?" is the questions I get asked when I tell people I have read it. Mostly, my answer is that I don’t know, so I’m going to use the rest of this post to try and work out what I think.
 
I’m going to number my thoughts but only because I like a list and it’s easier to read.

1. The draft Brexit agreement probably isn’t the first thing you should read after recovering from a
panic disorder that was rooted in your inability to control anything. It has left me with a feeling that we are in an antebellum age, where the slightest thing could tip us into war.

2. This is a draft and still has to be agreed. If it has taken me this long to read it, I can be fairly certain that my MP won’t have time and so when asked to vote on it he won’t be doing so fully informed.

3. Any break up is tricky but this is like a divorce between 27 people who have thousands
of children and one cat. How do you decide who gets the cat?

4. This document doesn’t actually say anything very much. It doesn’t say who is going to get the cat, just how everyone is going to behave while we try to decide who that cat will live with.

5.  There are deadlines for agreeing most things, which is very sensible. Most of these dates are
between 2020 and 2027, which almost certainly means that if the agreements haven’t gone well the fallout will be the problem of a different government.

6. OLAF isn’t a snowman.

7. There are several things that we would like to still use that belong to the EU. Some of those things they won’t let us use (like the Galileo satellite system - which is alright by me because I love a map!) and some things they will charge us for during the transition period  (like OLAF who deals with
international fraud and Tom who controls anything nuclear - more on Olaf and Tom later). The draft agreement doesn’t say how much these things will cost but does say we will get the bill in 2020. (Again: problem for next government)

8.  I’m still cross that the public was ever asked to vote on something that was too complicated to
deliver. There is an analogy doing the rounds on social media where someone has a cake and wants to get their eggs back out of it. I confess that I am someone who preferred cake to eggs but most of my anger comes because it’s cruel to show someone a cake and tell them that they can have the eggs.

9. I belong to the gym and  know that if I only swam 3 times a week it would cost me more. We don’t know how much of the EU we are going to use and how much that’s going to cost us because that is still to be agreed but it won’t be free and I suspect it will be more than three swims a week.

10. Much of the draft agreement refers to laws that are already in place and says what we will stick to or can ignore (and I was often confused about which way round that was)  but without the original articles in front of me I had no idea what we might still have to do or not have to do.

11. The draft agreement has worked hard to protect the Northern Ireland boarder but loads of people won’t like it because if we can’t agree we stay in a customs union indefinitely.

12. Actually, it might not be indefinitely (I’m not sure if I’m the only one to have read this) but it says : "If the application of this protocol leads to serious economic societal or environmental difficulties liable to persist, or to diversion of trade, the EU or the United Kingdom may unilaterally take appropriate measures."

13. Fish: I have sympathy for the fishing industry and can completely understand why they want Brexit.  The EU helped to destroy the small fishing industry but did help to replenish fish stock with quotas. 

14. Fish: Agreeing anything about fish is going to be difficult and so the deadline date for agreement is 20XX.  I'm assuming that gives us 82 years to agree, which I don't think is very optimistic.

15. Fish: We have agreed to stick to quotas on two types of fish, neither of which I've ever heard of.

16. Lawyers qualifications will be recognised in the EU.  I shouldn't have been surprised that this was one of the first things in the document written by lawyers.

17. There is a lot of information about protecting the pensions of people who work at the EU.  This confused me but I think they are OK.

18. I think we are always going to need OLAF and Tom. Tom owns our nuclear power stations and controls the radioactive material for scanners and cancer treatments.  We might have given OLAF most of his data but he now owns that data.

19.  The agreement does state that we will be able to 'control our boarders' and that we intend to develop a points based immigration system.  If you voted for Brexit to keep Polish people from coming to England unless they have skills we can't provide here (which could be being prepared to work for small amounts of money) then you have got what you wanted.

20.  There is something about people who have been working in the EU and their rights to access UK benefits.  I think it means that if you've worked in the EU then you will have to pay for NHS treatment (although I'm not sure).

Having read it and now listed my thoughts I'm still none the wiser about whether I think it's good or not.  Generally, people like me, who are in the middle will be roughly alright whatever happens but I do worry about the people on the edges.  Any change affects them the most.

Sleeping Beauty

The game my daughter most enjoyed playing when she was two was Sleeping Beauty. It was her favourite Disney film at the time and this is how we played it: I had to pretend to be asleep on the sofa and she would carry on playing as if I didn’t exist. She would trot around in her silky pyjamas, tiara and plastic princess shoes, reading books, doing jigsaws and building things with mega blocks until she got bored. Then she would clip-clop her way around the house, pretend to be surprised that I was on the sofa kiss me and demand that I wake up and talk to her. She was a child who needed to talk, so I was never left to sleep for very long but I would often consider how terrible it must have been to miss 100 years.

The First World War ended 100 years ago and it’s hard to comprehend how many changes there have been in that time. Last night I dreamt a modern day Sleeping Beauty story but from the perspective of what happens next. Her excitement about being awake soon turned to disappointment that it hadn’t been the war to end all wars and rapidly turned to confusion and fear, as she grappled to understand the world she lived in now.

I’m quite excited by dreams at the moment because I haven’t had many in the last six months. I did have one about shoving elephants in filing cabinets after my first EMDR session but normal weird confusing dreams that come from nowhere were just missing. The dreams that turn your experiences into metaphors that your brain can file away don’t seem to happen when you have PTSD.

Sleeping Beauty isn’t the Disney Princess I would choose. (It’s Belle, in case you are wondering. I’d do anything for all those books!) Maybe, though, my daughter, at two, was preparing me. I feel as though I have woken up and although I am still quite excited, reality is reminding me that there are things to be done and that this is my busy season.

There’s still loads to look forward to though because Aurora has three fairy Godmothers and lives happily ever after.

Remembering

The first World War ended one hundred years ago and my mum died six months ago.  Rememberance services remind me of my dad, who would play the last post in the High Street and my grandad who was a soldier between the two wars.  This year, though, I was thinking about my mum and the artist that inspired her.

When I was fourteen I went on an exchange trip to Germany. During my stay we went to an exhibition about the war.  They told me that this was the first of it's kind and were shocked at my descriptions of huge British war museums.  Neither of the wars were something that was talked about they said the German people felt huge shame and would prefer that it just hadn't happened. When I told them about Poppy Day they were equally shocked. They thought it sounded like a celebration. I told them about the money it raised to look after people that were hurt in the wars and wondered what the Germans did. 

It has always upset me when people use this day of remembering in a very partisan way.  People on all sides were hurt.  Discussion, cooperation and peace should always be the aim in future. 

Kathe Kollwitz was a German artist and printmaker, who documented human suffering.  She was born in 1867 and became noticed for her work with a series about the weaver's revolt.  Kathe made many portraits of women, which I love but Mum was particularly taken with her work that featured mothers.  Many of them are very sad.  Mothers whose children have died, or are starving feature alongside pictures of her own children.  In 1914 Kathe's younger son, Peter, volunteered for the war and shortly after was killed in Belgium. That was when she became a pacifist.  She made posters, a series on war and ventured into sculpture to create amazing tributes. Her final works were concerned with death and seemed to be a farewell.

Fixed

I’m probably about to wildly over share but I’m so excited that I just don’t care.

I have been stuck in a living hell for the last six months. Not to over dramatise the situation but it has been really awful.

The trauma that I suffered because of mum’s death is more complicated than I want to go into but it left me with Post Traumatic Stress Disorder (PTSD). This meant that my brain was broken. For a long time I couldn’t close my eyes or look at my hands without replaying the traumatic images in my head. Smells would leave me being unable to breathe. I couldn’t sleep and if I did I would wake gasping for air and gripping my upper arms hard enough to bruise them. I lost my appetite and felt permanently nauseous. I was terrified of seeing people just in case they said anything that caused the images to replay. I couldn’t watch television or cope with loud noises. My brain felt like it was constantly fizzing. As time went on, I felt depressed and defeated by the situation and wondered how I could go on.

People were sympathetic but because I couldn’t explain what was really happening for fear of replaying the images, their sympathy only isolated me further. When people said that it was understandable because both parents had died so close to each other I felt like a fraud. You see I’m a bit hard. I don’t cry. I don’t have an issue with death.

Instead of normal but extreme grief I have been dealing with a constant video playing behind my eyes that left me feeling useless, out of control and not safe.

Some people would give up, drink, take drugs and pull the duvet over their head. I used to fight giants so I walked, drank water, did yoga, swam, ate three meals a day whether I fancied them or not and practised mindfulness.

As a psychology geek, I already knew that the therapy for PTSD was EMDR. (It’s always important to fight acronyms with acronyms) and when I told the consultant at the hospice what had happened and how it had turned me into  ‘Lady F-ing Macbeth’ (“Don’t worry,” said my sister after, “pretty sure that’s her middle name.”) she confirmed that EMDR was the way to go.

It is only available privately, so I found wonderful Helen at the Silver Street Clinic. I’ve had eight sessions with her, with only three of them being EMDR.  In the first we talked about what had happened and how I was feeling. The second gave me strategies for dealing with the anxiety symptoms. The third and fourth were EMDR sessions, after which I felt able to go back to work. The images were mostly under control and we locked them in a box.  In the fifth we talked about my difficult return to work but decided that it was alright to stop treatment.Then I cleaned my mum’s kitchen cupboards and the videos started to play in my head again along with a return to bruising myself in my sleep.  Those images refused to stay in the box.  Session six was to assess what had happened and a few more coping strategies. On the seventh visit we got distracted talking about death in general and things that can’t be changed. On Tuesday I had the EMDR session that fixed me. The images came out of the box, we turned them black and white and dealt with the difficult emotions in a safe way.

Everyone has heard of PTSD in terms of soldiers coming back from war. We know that it’s an anxiety disorder caused by witnessing traumatic events.  It's not so common in every day life.  Mostly, us humans are very efficient at dealing with seeing an isolated trauma.  Our brains have mechanisms which allow us to file the event away in a safe way.  Much of this work is done while we are asleep.  We dream and our brains relieve the trauma in different ways.  Usually, while we sleep the amount of nor-adrenaline released is reduced and so relieving the trauma in REM sleep is safe.  In patients with PTSD this mechanism of the brain in broken and instead even more of this anxiety inducing chemical is released. 

I referred to the time from Mum's diagnosis to her death as the Great Elephant Wars of 2018.  The whole thing was like fighting the proverbial elephant in the corner.  Something that you shouldn't really mention but had to constantly fight. It wasn't a real war, though and I was furious at myself for being so weak to have been this troubled by the situation.  Helen explained that your brain is like a filing clerk and because of  how busy I was (still fitting in concerts, clubs and pupil exams alongside wanting to care for Mum and grieving Dad) my filling clerk was overwhelmed.  It had an over full in-tray and was really beginning to panic about ever getting on top of the job. Then the traumatic death occurred generating a black sack full of paperwork but there was no room in the in-tray so my brain and it's desk got buried in papers to file.  It broke.

EMDR (Eye Movement De-sensitisation and Reprocessing) therapy works by simulating what your brain does during dream sleep.  Your eyes are moved from side to side while you visualise the trauma. You can follow a light, be tapped on the knees or have beeps played into alternating ears (which worked best for me).  A skilled therapist takes you through the visualisations and asks you what you are feeling and where.  They use techniques like turning the image black and white which help to keep you feeling safe.  You can stop at any time you want.  It is like some sort of voodoo magic. 

I came out of the last session and knew I was fixed.  I felt hungry for the first time in six months and realised that I didn't feel sick anymore.  I could go into Marks and Spencers without my heart pounding in my chest (I bought myself a pain au chocolate because I fancied it).  There was a spring in my step and I noticed that I felt happy.  Since then I have been able to watch TV and sit in the staff room. My head feels lighter and the Long Suffering Husband has commented that I have lost the 'haunted' look.  I can feel that my smile reaches my eyes.  I'm sleeping properly (except for Thursday night when I was like a kid at Christmas and couldn't wait to wake up and start the next day).  I have been bouncing all over the place and decided to write this blog and over-share just in case you hadn't noticed.

Missing you

I miss my blog. I wish I could trust myself to write.

French is a tricky language

Being a teacher is hard. Every minute of every day you have to keep thirty people happy. Thirty people who are a group that you are not part of. The psychology of group behaviour tells us that this is a dangerous position to be in and worse if they perceive you as different. If the group aren’t happy they can turn on you. My first form teacher at senior school was a young French teacher. My form, as a group, decided that they didn’t like her. It was instant and those who hadn’t made up their minds had no choice but to go along with it. There were times when my form made her cry and no matter how uncomfortable I might have felt about it, I did nothing. I hope I didn’t join in but I know there were people in the class who did, despite not liking what they were doing. One day, the class locked her in the cupboard. I sat, horrified, whispering to the girl next to me, “This is horrible!” but we didn’t help her . In my imaginings, I stand up and let her out, or wait til the class has gone and make sure she is alright but I’m fairly certain I did none of this.

Being the leader of a group of thirty can also be dangerous if they are on your side. You can get them to do anything and throughout history I’m sure there have been teachers with psychopathic leanings who took advantage of their position. Luckily, I have no stories like this.

I’ve often wondered what happened about the teacher in the cupboard incident. Did she ever tell anyone? Were the ring leaders ever spoken to? Did they tell their parents? Did I tell mine? I have no idea. I’m sure my parents would have been horrified and I’d like to think that the parents of the jeering, clapping, laughing crowd would have been too but I’m not sure.

Parents don’t always back the teacher. Sometimes, when a child goes home and says they don’t like French, the parent will see the teacher and complain that their child shouldn’t be made to speak that disgusting spitty language, full of oui oui and poo poo.

Teaching is hard anyway but can you imagine doing it in a foreign language? Our school is lucky enough to have a lovely native French speaker to teach the language. I feel very protective of her, probably thinking about my first form teacher and have tried not to laugh when the children tell me that she swears in lessons. Don’t panic! She doesn’t actually swear but when she says,”Shhh” she closes it with a ‘t’ sound. This is probably how it’s done in France. It’s a minefield.

Before we went into a lesson she said, “Julia?”

I love the way she says my name, all singsongy with a soft j at the front.

“When you go swimming how many lines are they?”

We had a conversation about how busy it is at the pool, the best times to go and other pools that are quieter.

“It’s no good,” she finally said, “You see I can’t stand the promiscuity,” and walked off to teach her class.

I stood for a while, scratching my head until I finally decided that she had just mis-pronounced proximity.

Because I feel protective, I thought I’d mention it. I didn’t want her going to reception and demanding non promiscuous swimming. 

“But you have the word in English?” she said. “What does it mean?”

I told her and she was horrified. I asked her what it means in French.

“It’s just, you know, where you have too many people."
"It's probably just a little more specific in English," I told her.

I'm so glad the only French I have to worry about is the names of composers, although this has proved tricky this week. "What is EDF PDF?" one pupil asked.  I think she meant Edith Piaf.