Clouds

Sometimes you just have to look up.

When I was little, in a pram and talking too much,  my mum would encourage me to look up. Children stayed in prams well into their talking years and my mum told me that she used to wish for one of those new-fanged  pushchairs that faced the other way. I wanted to know ‘Why?’ all the time and that was exhausting. She probably thought there would be less to look at and therefore less questions. She was very disappointed when my first question was, “Why isn’t the sky always blue?”  However, whenever I’m feeling a little overwhelmed I go and look at the sky.

My youth was filled with endless hours of no entertainment. We were bored a lot of the time and I can remember whole days lying on the grass watching the clouds skid across the sky. Both my parents enjoyed the game of finding pictures in the clouds.

I know I promised not to talk about death but here I go again.

When people die you miss them. I know that sounds obvious but really it’s the most important thing. The people who tried to answer your questions just aren’t there. Yes, you are a grown up and there are books and the internet and they probably haven’t been very good at answering your questions for years but they are just not there to ask. Stupid things, that you don’t really need an answer to like, “Do you think I should plant my potatoes earlier this year?” and more important things like, “Would you have liked us to keep that hideous candlestick you got from your mother?” Then there are the huge questions that you didn’t even bother asking when they were alive like, “Am I enough?” Obviously, you didn’t ask them when they were alive because you knew there was unconditional    love. It didn’t matter if the answer was, “Don’t be stupid, you are a hopeless waste of space who has    
 never achieved anything significant in life,” because they loved you and that was enough. Now they aren’t there to love you those big questions suddenly seem important. This can be overwhelming, so I look at the sky.

Us humans are always looking for patterns and signs: things to make sense of our existence. When people die and they are missing we look for signs of their continued presence. I used to scoff at people who did this. I still wouldn’t go to a clairvoyant evening but I can understand why people do.

Last year, on the anniversary of my Dad’s death, I was feeling a bit overwhelmed, so I looked up and in the clouds was a huge heart. It seemed nice. Dad always used to say, “Tell me something nice,” when I saw him and the cloud made me think that an afterlife and signs were possible.
 

  

This year, on the second anniversary I was feeling overwhelmed again. I’d had texts reminding me of the date, I was struggling with a flu like cold, worrying about my sister (because that’s what big sisters do) and busy trying to sort out Mum and Dad’s belongings. I looked up and said, “Right, if you are up there and can send a sign then do it again.” A cloud quickly became a heart. Now, I’m sure you think I’m making this up. I would. I would think that I’m a poor fragile woman who is seeing things to make herself feel better about her grief. That could be true. Who knows, or cares? Except that I did. I didn’t have a camera with me and so kept thinking. “I can’t prove this.”

It bothered me all morning. So I grabbed my camera and went out again. I searched the sky for another heart shaped cloud but there weren’t any. Then this appeared.

 

I caught my breath. “Oh, it’s a polo,” I thought. “Is Mum with you?” I shouted at the sky, like some mad woman and an elephant moved across the sky.

It may not look like an elephant to you but you have to remember that my Dad couldn’t draw with a pencil, so what’s the chance he can do any better with a cloud?

Dates

Do you remember the box of dates you used to get at Christmas?

It was part of Seventies Christmas tradition along with a tray of nuts in shells, where the brazils got left because the silver nutcrackers were not up to the job: risking a what we called at the time, a black man’s blister. This was the seventies and if we were being racist we didn’t know. I like to think we were just being descriptive. For a white person having a blister filled with blood might make your skin look black. I’m probably being very hopeful though because I’m sure I remember being horrified when my cousin called it a black man’s pinch, which certainly is racist. If only we’d called it subdermal haematoma. Anyway, back to the dates. They were in a long thin balsa wood box; curved at the ends. Inside, the dates were arranged in a herringbone pattern: two by seven in two sticky layers separated by a piece of waxed paper and a long plastic stabber, which was too flimsy to hold a whole date. The lid of the box promised wonderland adventures. The image of the exotic fruit was captioned with instruction, “Eat Me.” I suspect in many households the dates remained uneaten and were finally thrown in the bin in February.

Dates in February are never popular.

Those dates were a distraction. Now I’ve lured you into my memories of the good old days I’m going to carry on doing what I was going to stop and I’m going to talk about death. I’ve never been very good at remembering dates. I will forget your birthday and I never really understand people who remember. Now that I’m old there are a whole new level of dates to remember: death dates.

I’m not sure if it’s a new phenomenon brought about by social media or just something I’m noticing but I don’t remember my parents commemorating death days.  I’m sure they thought about them. I know my mum was always a little sadder at New Year but we didn’t talk about it. These days people put butterflies on social media or send texts to remind you that it’s the day your loved one died and it can feel like every day in February is a death day.
I’m not sure what is better but I’m beginning to get to the stage where I’m ready to throw those dates in the bin.

No one likes a date in February.

Manipulated

Do you ever get the feeling you are being manipulated?

It might just be me. People have always said I’m cynical and I suppose with so many people on the planet, everyone is jostling to get their own way and will do whatever it takes to get it. However, I’m sure when this time is judged by history there will be a lot to say.

The best education I had at school was in a period when I wasn’t being educated. I had been part of a guinea pig project, to make the top 5% take their O levels a year early. To this day, I’m not sure why but it is still something schools aspire to. Anyway, for me and about half of my group, it was an unmitigated disaster. Our curriculum narrowed (no music but economics) and so about half of us were labelled as failures. We were given a choice: we could carry on or drop out of the project and start again with the rest of our year group. About six of the ten opted to start again. This left the school with the problem of what to do with us. We stayed in some classes like French and still took maths and English early but they knew that economics, physics and geography weren’t going to hold all of our attentions and they didn’t want us to disrupt the others. Instead, we had classes like critical thinking, theology, understanding propoganda and colouring. I honestly can’t remember what the colouring class was but I enjoyed it. Our class of ten quickly shrunk to 4, as most chose to bunk off, take drugs and nurse the huge failure chip that had been placed on their shoulders. It was these classes that have left me with a growing sense of mistrust about what is currently happening in the world and specifically our country and politics.

We studied Nazi propoganda and looked at how people were manipulated into betraying their morals. We learnt how all this had led to press regulation. We discussed why and how good people could do
 bad things and how power can corrupt even the most virtuous people.



Today, we have an unregulated press in social media and it is flooded with manipulative images and statements and I’m shocked at things I’ve seen people, who I know are basically kind human beings, share. Everyone is quick to judge and quick to share. It’s too easy to click something without really thinking about it. It’s then not easy to change your mind.

Now, I’m going to be brave and tell you what I think about a story that is getting a lot of attention. You may not agree with me but I am prepared to be wrong.

I worry that the Shamina Begum story is manipulation.

If you are unaware (living under a rock) then this is a summary of the story (as I see it). Shamina Begum is one of three girls, who at 15 decided to travel to Syria to become a Jihadi bride in 2015. The girls were from Bethnal Green and for some reason their case got a lot of press attention, despite an estimated 500 women and girls having done the same thing.  Public opinion was against them. I think it’s complicated and can’t  even begin to understand what would make a girl from East London think that being married to a man who had the right to beat and control her would be better than the life she had. There is no doubt that these girls bought into the ideology that was being sold to them. There is no doubt that they made a choice.  All three girls married Western ISIS fighters, two of those husbands have died in battle, one of the girls was killed in an air strike and the other is reported to have wanted to escape but became too scared when another girl was beaten to death. They were living in war conditions in Raqqa. Their children have died. One girl is dead and we had lost contact with the others.

Suddenly, the least pretty, least likeable girl was found by a journalist working for The Times. She is the girl whose husband is still alive and the girl who says she has no regrets.

Whatever I think about her and her case. It’s the timing I find suspicious. At the point that this story came out people were just beginning to calm down a bit about Brexit. They were suffering from Brexigue (I can make up words too). “I can’t  even be bothered with Brexit any more. I don’t care if it doesn’t even happen.” Even Question Time became a little less angry for a week. There was a rise is Regretsiters. “I wish I’d never voted leave now.”

It’s almost as if the people who were worried about the invasion of our little island needed to be reminded why they’d voted out of the EU in the first place, even if those reasons aren’t strictly logical.  The story broke, people got very angry, the government appear to have broken international law to appease the anger and Question Time is back to normal.

It’s a controversial view but I feel manipulated.

It’s not Marie Kondo

In the last few days I’ve taken four bags of stuff to every charity shop in town (there are 8) and two car loads to the warehouse one out of town. And I’m no where near finished.

You would imagine that donating that much to charity would make you feel virtuous; as though you are doing something good. Not me. No, I feel guilty. “I’m sorry. I’ve got another bag,” I say, “Thank you so much for taking this.” I’d really like to be able to put it somewhere without having to talk to anyone at all but that’s not possible.

The shop volunteers like to talk to you. It’s probably why they volunteered in the first place. Other people probably like a chat; people who aren’t social awkward and in the middle of a death related breakdown. (Sorry, I know I wasn’t going to discuss it anymore). Questions about gift aid don’t seem relevant. Can you sign up to gift aid when donating things that aren’t yours?

I’m a fan of a de-clutter. There’s nothing I enjoy more than re-organising my sock drawer. You always feel better about yourself once you’ve got your pants organised.  I’m not a natural, though. I’m not one of those polished people, who never has a hair out of place and has a perfect clean and tidy home in matching pastel colours. I have to work at it and often I forget. When my children were small Mum and I enjoyed reading about Feng Shui and were fans of Karen Kingston, the de-cluttering guru of the time. Now, there’s a new sage of the spotless: Marie Kondo.

“Are you doing a Marie Kondō?”
“We’ve had lots of donations lately. It’s probably Marie Kondō.”

Why aren’t there chocolate handprints on her sofa?

I bit my tongue. I didn’t shout, “It has nothing to do with a perfect Japanese woman, who I’d love to ridicule but secretly admire. It's death cleaning.”

I’m grateful to Karen Kingston, as I’m sure future generations will be to Marie Kondō. My parents didn’t have a loft stuffed full of empty boxes, broken suitcases, outdated computers and bits of wire. They did keep things that ‘sparked joy’ as Kondō would say, which presents its own challenges when it comes to death cleaning. What do you do with every copy of The Artist Magazine dating from 1968?

The idea of only keeping things that spark joy seems to be completely turned on it’s head when you are doing death clearing. If you pick something up and tears prick at your eyes, you have to keep it.

My voice is back (or is it?)

After another week of enforced silence I can make proper vocal sounds. Woo Hoo. Time to celebrate. Say something. Shout it from the rooftops. That’s all very well but I just don’t think I have anything to say.

I don’t want to talk about death anymore. Actually, I’m more than happy to talk about death but I don’t want to fill the blog with it.  This was supposed to be a place where I could notice the funny things in life and bring some humour to the deeply tragic. Things might have tipped too far into the tragic.

After you have broken there is an opportunity to put yourself back together in a new way. I consider this every time I lose my voice. When it comes back I wonder what I have to say. This is also how I feel about the grief driven wilderness years. It’s not a place I want to be stuck but where to go after is a bit of a mystery.

 Generally, how to live life in this period of my life is a bit of a mystery. I talk to friends and we all feel the same. It’s a limbo period and one we have no role models for. Our careers are plodding along; we can see the end in sight although not close enough to touch. The excitement of promotion and success that we had in our youth is gone. Our children are grown up and moving on to do their own exciting things. Our relationships are comfortable. I was trying to think about my parents at this stage of their life and I realised that I have absolutely no idea what it was like. I had flown the nest and it wasn’t until they became grandparents that I had a proper connection with them again.

In my my mum’s notebooks I discovered that one of her ambitions as a child was to be able to fly.

I might just go and stand in the back garden with feathers in my hands until I learn to fly or have something to say.

Resilience

Sitting in the sauna with my sister listening to two teenagers witter on about their lives, the rules for dating, boy codes and other incomprehensible subjects I realised that children have the language of dealing with their emotions but still have as little clue about how to actually cope with them as we did. It turns out their friend was, “totally triggered,” when her mate kissed her boyfriend and that even though another friend had slept with every boy at the party that was totally fine because , “she has so much respect for herself.” They all know the word resilience but when life throws a curved ball I wonder how many of them will actually be able to do it.

Resilience is one of the new fads in pop psychology. Schools talk about teaching resilience, even though that concept seems either cruel or impossible. Fans of corporal punishment will argue that people of my age were taught resilience at school. Teachers could stand you in front of the class and hit you for spelling a word wrong. They could throw missiles at you for talking, or send you to the headmaster for a proper thrashing. Oh, how we learnt to survive. Except that I suspect many of us didn’t. Just as how some kids will crumble under the pressure of constant measuring, testing and changing the goalposts that happens now. 

Maybe the lesson in resilience should actually be learning when to give up. I think of myself as a pretty resilient person, which is why my reaction to my mum’s death was such a shock. People who know me argue that I have been resilient (or stubborn) in refusing to let that PTSD thing beat me.  I just think I was lucky that I was able to find the right kind of help.  To get that help, I had to give up a little bit, though.  I couldn't have done it if I had gone back to work after my one week's bereavement leave. 

A report today says the our children are the safest but also the unhappiest. Children’s mental health is reported as the worst it’s ever been with many seeing no point in living but we can’t know that those very same suicidal children wouldn’t be the survivors if they were under threat.  But does that mean we should put people under threat to test them? Is it right to change what's expected of children in exams just to see who will survive?

I grew up in a family of fighters. My father, in particular, had a tough start in life. They were poor in the days before a social security safety net. A jam sandwich for tea was a good day. Both my parents sat with slack-jawed incredulity when anyone talked about the good old post-war days, as for them, they were times of huge struggle. But they survived.

When your parents have died one of the really hard things you have to do is sort through their stuff.  There are memories everywhere.

My mum was an artist and I have recently started the mammoth task of clearing her studio. It is filled with notebooks and sketchbooks that tell of her life, never mind all her artwork.There are inks I remember buying her for Christmas in the year that my Dad wrapped everything in a foot spa box as a joke (it didn’t go down well.), every type of paint you can imagine, and unidentifiable tools. There are books and magazines (dating back to 1972).

I was no good at art. My mum would laugh at my attempts and suggest that I took after Dad, who famously couldn’t even draw a cat. Growing up in a house full of art stuff was useful though. When I was put into a remedial handwriting group in senior school I was so mortified I spent every spare moment teaching myself calligraphy. (I told you I was stubborn) I remember Dad being impressed because as a left-hander who had been forced to write with his right his writing was awful. I remember him having a go but I thought Dad never gave up on anything.  However I found his calligraphy book.  There are times you just need to say :

Knowing you can’t do everything is a kind of resilience of its own.

We Need To Talk About Horizon

It’s taken me nearly two weeks to watch the whole of the BBC Horizon programme, “We need to talk about death.” This feels like a failure for someone who has been banging on about this very thing. It was something I needed to watch in small chunks, so that I could process my emotions. I’m glad for this programme and think it has a lot going for it but it’s not telling the whole story.

The programme spoke to about four palliative care doctors and one nurse about their work. They interviewed patients who were all happy and vital. They showed people in a beautiful Hospice painting and talking about the songs that would be played at their funeral. It was a great thing. We need to see inside Hospices more often - the mystery of them needs to be debunked.

Despite both my parents being under the care of our local Hospice I can’t tell you what it is like.

I watched the Horizon programme battling with my emotions; the biggest one being anger. No, not anger exactly; more bewilderment. What I was seeing didn’t match my experience. There were no discussions with doctors from a palliative care setting. I’ve spoken about the doctors my parents saw before, who were all death deniers. Never did they manage to speak to a doctor like those featured on the programme. In fiction doctors are always the people who sit and patiently discuss a person’s options when they are told they are dying. Oh, and they are told that they are dying. No pretence; just honesty and statistics. To be fair, if I was going to write a novel I’d probably write what I would have liked to have happened too.

Both my parents had a nurse from the Hospice visit them.  Lots of forms were filled in. Dad only saw the nurse once before she went on holiday and Mum had monthly appointments, which she hated. Mum and the nurse were not best matched. Mum couldn’t stand the sympathy, the head tilting, the sing-songy voice and the ‘its all going to be lovely, my lovely’ approach.  At the last few visits, answering the same questions to get the forms completed was a huge trial. The nurse did her best but there was a doctor who wanted to play with his chemotherapy drugs on a cancer he’d not seen before. Doctors always outrank nurses, even if the nurses seem to be saying more sensible things.

As well meaning as the TV programme was trying to be, I do wonder if painting such a positive image is always a good thing.  Some of the things I have found really difficult is that my reality of caring for someone who is dying is so different from how it's portrayed. Even writing about it, now, makes me feel as though I'm breaking some secret life rule.  "Whatever you do, just don't mention how bad it can be."  The Nurse on Horizon said, "When death is done wrong it can be so bad.  So bad that it has repercussions that last forever.  People never get over it." My Mum's death was done wrong. Or was it? She had palliative care intervention:Early.  It came quite soon after her diagnosis. She was able to be at home (which apparently she had chosen) and on paper the death was quick.  The forms make it look like everything was done well.

I try to tell myself that our experience was a freak; that everyone else gets good deaths.  I try to think we were just unlucky but I'm not sure.  The more people I speak to the more I think the difficult death is more common that we are admitting to.  People tell me about relatives languishing in hospital for weeks/ months with no one telling them anything, or relatives dying at home in horrible and painful circumstances or arguing with paramedics that their dying relative had a DNACPR, only to be completely ignored or threatened with legal action. 

The reality is different from the fiction.  The doctor presenting the programme seemed genuinely shocked that as he put it, "all round good holistic care in the right setting can make such a difference." I really must stop shouting, "No shit Sherlock!" at doctors, even if they are on the telly and can't actually hear me. It would make all the difference but I wonder how many people get to access that. 

End of Life care in this country is mainly provided by charities, which means there is a lack of standardisation (just as in cancer care the sexier cancers get more funding).  Some areas will have absolutely fantastic services and others very little.  People tell me that our Hospice is very good.  However, there wasn't a bed available when my mum wanted one.  We waited five days for a bed and then mum gave up on the idea, knowing that it was too late.  However, it wouldn't have been too late to get some relief from her symptoms, or be somewhere where the drugs she needed to help were available, or to have someone give us a break, or to be the most qualified person present (or actually qualified person because I can tell you that an interest in music in no way qualifies you for dealing with a gruesome death).  At the last form filling session the hospice nurse kept asking mum where she wanted to die.  Apart from knowing that she really didn't want to die there was no way to answer that question.  We had never seen the Hospice and didn't know if it was better than where we were.  No one had thought to invite us for a visit. 

The Horizon programme was a good one but it is just a start and maybe we need to be a bit more honest about what actually happens when we die and more honest with people about what stage of that process they are at.  It might also be useful to start having conversations about putting people who are already dying to sleep (in the same we we do our favourite pets). 

The Gift

I haven’t written for a while. There’s too much fizzing around in my head to know where to start. I want to write about the Horizon programme and arrogance and ignorance and grief and bereavement admin and family but it’s all jumbled up with everyday stress like work (mainly technology and bloody printers), family, Brexit, Japanese, photography, birds, and just generally feeling a bit out of sorts (I’ve got chilblains!)

The thing about this grief and mental health stuff is that it’s unpredictable. Although I’m fixed and my brain isn’t constantly replaying the images of my mum’s death it does seem to have learnt how to worry. I used to be the laid back one. The Long Suffering Husband used to do enough for both of us and I would say, “The worst that could happen is that an elephant could fall out of the sky but it’s unlikely.” Now that an elephant has fallen out of the sky and I caught it with my bare hands I strangely find myself considering all the other elephants that are up there. My car had a slow puncture and I was unable to deal with it for days because I had to process all the things I could do or had done wrong. I dropped my son back at university and spent a sleepless night considering the programme about drugs and students I’d listened to on Radio  4; replaying all the worst scenarios that could happen to him. Everything can seem fine and suddenly you can be cursing the printer for not working and find that tears are pricking at your eyes for no reason. It truly is the gift that keeps giving.

I think this is all normal. In our death and grief denying world, we like to think these things are sorted and packed away in a few days, never to bother us again but it just takes time and maybe things will not be the same. Maybe it’s an opportunity to change, grow and make decisions about the next phase of your life.