Grief Doesn’t Wait For A Person To Die

Whilst walking to an appointment today, I was wondering why the ‘I need my mum [insert tears here]’ feelings had been stirring again over the last few days. Part of it is the state of my life right now. But then I realised that today marks four years since I found out that Mum had a terminal diagnosis.

One day. One conversation. One car journey. My life hasn’t been the same ever since.

‘Diagnosis day’ was a weird one. I was volunteering in Leeds (following a very early morning). Dad text me asking me where I was, which was weird, because I was at uni so he no longer ever needed to know where I was. He drove over, picked me up, and told me while he was driving. I looked out of the window. I didn’t want him to see me cry. We got home and didn’t talk about it. Mum and I took a selfie. I went back to uni later that afternoon.

My grief started that day.

It’s a difficult one to articulate. How can you grieve for a person who’s still there? How can you grieve for your old life, when nothing’s really changed (yet)? The only thing that’s changed is that you’ve received a new piece of information. Everything else is the same.

But you do start grieving. In and amongst all the oh-my-goodness-shock-confusion-trying-to-work-it-all-out, there’s grief. It’s been four years, but it’s something I’ve struggled to come to terms with. That is until I started listening to The Grief Cast podcast lately. Many episodes have people who describe their grief starting while their loved one was still alive. It’s helped me realise that it’s okay. It’s okay that my grief began that day. I’m not alone.

From the moment you find out that your loved one is dying, everything changes. I mean everything. The solid foundation of ‘Mum will always be there’ disappears from beneath your feet. You become more careless with money (can’t take it with you when you’re dead). Assignments feel pointless. Relationships develop new importance. Jobs can feel worthless. Sleep can go out of whack. Food can go a bit wonky. Every time your phone rings, you’re convinced that someone else you love is dying or has died. Your anxiety can skyrocket. You start crying at random objects. Everything changes.

You become a member of a club you never wanted to be in. Grief begins.

You grieve your old carefree life. You wish that the most important thing on your mind was still what to wear for a Friday night out. You begin to miss the person your loved one was, as you watch them fade away in front of your eyes. You watch your family change, too. Morphing into a different family from the one you grew up with, as everyone tries to work out how best to cope. You spend night after night mulling things over, crying, getting angry and bargaining with the unknown. Later on you begin to wish that your loved one would die. You can’t stand seeing them so unwell, and your life is on hold until the point of death. Then you feel guilty and angry at yourself for feeling that way. Grief is well and truly present.

We need to move away from the assumption that we can only grieve once a person is dead. We need to move away from the stereotype that grief is a whole load of crying for a while, then it’s finished and you move on. It’s damaging to have these stereotypes because it makes it so much harder when you do have to experience the reality of grief. It can also cause people to react to our grief in insensitive (and sometimes bizarre) ways.

Grief is ugly. Grief is painful. Grief is messy. Grief is unpredictable. Grief can come in waves. Grief can rear it’s ugly head unexpectedly. Grief doesn’t have a nice, neat, end point. Grief is a life-long experience that affects us from the moment it begins. And that beginning is the moment our life changes. Not necessarily the moment when person dies.

One of the couple of selfies I’ve found that we took that day.
Featured on Huffington Post here.
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A Huge Thank You

Yesterday was Mum’s birthday.

A year ago, we started fundraising for Martin House Children’s Hospice in Mum’s memory, as she used to work there.

I am delighted to say that a year on we have absolutely smashed the target (it doesn’t all show on Just Giving as some donations went straight to the hospice). The money was originally going on lighting, but due to planning changes we have had a bit of a change of plan. It’s now going towards a music, art, and animation suite which is so perfect.

Mum brought joy to many people’s lives and hopefully this room will bring joy to the lives of many young people on their families. Mum was also a saxophone (foghorn) player and loved music. We would often dance around the kitchen to various CDs and blast them out in the car whilst we sang along.

We want to say a HUGE thank you to everyone who has helped us to reach this target – and there have been a lot of you! It was a fun thing to do, and a lovely way to remember Mum, and now she can live on through this room and all that it will provide.

Can We Please Talk About Death?

My Mum died. I didn’t lose her – she was in the lounge. She didn’t pass anything, death isn’t an exam and what does ‘pass away’ even mean?! She died.

You can talk about her and mention her name without whispering it. It’s okay. I like talking about her. I like remembering her. I like hearing stories of her.

I’m sick of people treating grief like a broken eggshell. Talking about it will not cause your own parent to die. Death happens to everyone, so surely we need to work out a way to talk about it?

I posted the above on one of my social media channels the other day. I was really surprised by the response. So many bereaved children commented saying how much they agreed. They also included the awkwardness that comes when someone says ‘I’m sorry’. How do you respond to that? I always say ‘well it wasn’t your fault’, but that sounds callous. As does saying ‘well it was a long time ago’, or ‘it’s okay’.

Nobody knows how to talk about death. We resort to nonsensical euphemisms. Nobody knows how to talk about grief. People whisper. Or they blank words out of sentences. It’s awkward and uncomfortable. Death and grief seem to have become one of the biggest taboos in our society. It’s really quite odd, because death and grief happen to literally everyone, so of all the things which could be taboo, it’s a bit bizarre that death has become one of them.

Rio Ferdinand did a fantastic documentary the other week where he spoke about the death of his wife, and the grieving process that he continues to experience. He spoke about his worries for his children. He spoke about his resistance to therapy, and later his need for it. It was raw, open and honest. It was refreshing to see an honest account of grief on a national TV channel. We need more of it.

Grief is horrible and unpredictable. It will affect everyone differently, and different people will need different approaches when it comes to talking, or helping. But rather than projecting your idea of what constitutes ‘help’ onto another person – why not just ask them what they need, or what they would find helpful?

The only way we can start to break down the walls that death puts up, is to talk about it. The only way we can begin to ‘trial and error’ our way through the language surrounding death, is to begin to try, experience a few errors, and slowly work out the best way for these conversations to happen. Death and grief aren’t a big black hole that needs to be avoided at all costs. Talking to someone about it won’t make you fall in the hole and keep falling until you can’t get up.

Please ask your friends if they would like to talk about their dying family members. Please ask your friends and family if they would like to talk about their dead family members. It might be awkward and uncomfortable, especially to begin with, but death happens to all of us, and slowly, together, we can work out a way to talk about it in a more comfortable way.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/can-we-please-talk-about_b_15940260.html?utm_hp_ref=uk-universities-education&ir=UK+Universities+%26+Education

Let’s Talk About Grief

Death is part of life, but it’s also difficult, and on the whole, crap.

It might not be that bad for the person dying – they might have been ill for a long time or might be ready to die. But for those left behind it’s usually rubbish and leaves them living with grief in some form. (If there isn’t anyone left behind then that is also crap, because nobody should be alone at the end of their life, so whichever way you look at it, death is rubbish).

Despite this, grief is something rarely discussed. It’s a bit odd, because while some subjects are becoming less taboo and more talked about, which is brilliant, grief appears to be lagging behind.

I’m not entirely sure why this is. It might be because those working to break down stigma – being more open, sharing their stories, talking about difficult subjects – tend to be slightly younger and maybe haven’t yet reached an age where grief is a feature in their lives. (I appreciate this is a huge generalisation and stereotype and there are older people also doing some brilliant work).

Whatever the reason, grief isn’t hugely talked about

This year seems to have contained more celebrity deaths than any other in my memory. A lot of people are blaming 2016 but it’s more likely to be that they were all a similar age and life happens. The fact that so many people are blaming 2016, instead of seeing death as part of life, further illustrates how afraid people seem to be to see death as something unavoidable that happens to everyone. It can be far easier to blame the concept of an evil year, than to face up to our own mortality.

Mum had excellent end of life care. She worked in palliative medicine all her life, so she knew what she was doing, but she died where she wanted (at home), pain-free, next to Dad, and I can’t think of a better death than that. Mum knew what she wanted, Mum and Dad discussed it, and her wishes were made known to all of the people looking after her. I’m absolutely convinced that Mum wouldn’t have had a ‘good death’, without having these conversations frankly, honestly, and in enough time for her wishes to be carried out.

Since Mum died, I’ve blogged about grief a little, and heard from people all over the world, of all ages, who are going through a similar thing. The fact that I have heard from the variety of people I have, shows that there is a lack of conversation surrounding grief, because if my blog attracts these people (and I’m just one little person typing from my bedroom, onto a blog that I put no money into advertising), then people are clearly hunting out the ‘I get it’ of another grieving person.

I’ve found that when it comes to grief, so many people don’t know what to say or do with me. As many of my friends know – I’m as blunt as they come at times – I certainly don’t expect anyone to do and say, or not do and not say, anything at all, but I still feel like there can be a wall between me and other people sometimes. Weirdly, the people I’ve found most at loss of what to say have probably been services, some people in services are brilliant, but others blame things on grief that aren’t grief-related, ignore grief at times when it’s probably worth bearing in mind, and trot out generic lines which aren’t at all helpful. I know I’m not alone in this because I’ve spoken to other one-parent people my age who have found the same thing.

If there’s anything that comes from all of these celebrity deaths, I hope it’s that we can open up conversations around death, dying and grief. It’s something that I never really thought about until Mum became ill, but since her illness and death, it’s something I’ve realised is massively important. It’s important to have conversations with your loved ones about what you’d all want at the end of your life, it’s important to keep talking to your grieving friends, and it’s important to keep talking to others if you find that you are grieving yourself.

This is to those of you for whom Christmas doesn’t feel like Christmas.

This is to those of you for whom Christmas doesn’t feel like Christmas.

I’m sorry that you are hurting.

I know that the ‘merry’ in ‘merry Christmas’ can feel as though it is mocking you.

When the whole world feels as though it is laughing, smiling, and celebrating, but those are the last things you feel like doing.

Crowded rooms can feel the emptiest.

Hugs can feel like they’re not quite tight enough, not quite long enough; never quite reaching you.

You smile but it doesn’t reach your eyes, and your own laugh seems distant and far away.

The pressure to be perfect can press down on your chest until you can no longer breathe and the number of people around can make your head spin. Occasionally you feel your mask slipping and you have to run to a bathroom and fix it before anybody sees.

Everybody wants to know what you’ve been doing all year and what your future plans are. That can be hard to answer when you’ve spent so much of the year in doctors appointments, hospital visits, and counselling sessions. It’s hard when your test results are medical rather than academic, when so many of your peers are patients or services users not students or colleagues.

It’s okay if your biggest achievement this year is survival. Fighting against the crap in your head, the illness that is determined to infiltrate your body, or the general difficulties that life insists on constantly throwing your way, is huge. It’s hard, brave, and courageous to continue to get up and dressed every day (or most days), when circumstances seem determined to destroy you.

Maybe you’ve lost someone this year. They might have died, or might have just exited your life. Maybe you lost someone last year, or the year before. Time doesn’t heal it, it just gives you longer to attempt to get used to it. Sometimes it makes it harder because the longer they’re gone, the more they’ve missed. Christmas can feel like it’s shining a light on the space that they’ve left behind.

It’s okay to miss them. It’s okay to grieve for them. The fact that they have exited your life doesn’t mean that you have to erase their existence entirely.

Be kind to yourself this Christmas. Let yourself have some time off. It’s absolutely okay to cry if you need to. If you want to laugh, then laugh – nothing in your life cancels out your right to feel happy. Let people in; if you can, and if you want to. Let them hug you. Let them be at the end of the phone. Let them text you. Let them listen. Let them be there.

Maybe you’re feeling just fine. If so, then please: try to be considerate this Christmas. Please understand that not everyone will be happy, not everyone will want to share copious amounts of food, not everyone will be able to manage being around large groups of people.

Christmas is only one day, but it can be incredibly stressful for those of us who don’t feel able to tackle it. Mental illness, physical illness, or other things, can all affect people’s ability to ‘Christmas’, and more often than not, we’re not trying to be difficult, we just can’t do it.

I hope that you all have a peaceful Christmas this year. I hope that it’s as stress-free as possible. I hope that you get a little time with your family or friends and that it’s as enjoyable as it can be.

I’ll leave you with some Winnie the Pooh wisdom:

“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”
― A.A. Milne

Cancer Takes Another Life

I’ve just heard that Dr Kate Granger died yesterday, at the age of 34.

I first ‘spoke’ to Kate over twitter a couple of months before Mum died. I’d seen her floating about on Twitter a while before then. I knew she was being treated in Leeds, and had asked Mum if she knew her (a high probability given that there were just 3 consultants in Mum’s palliative medicine team). Mum said that she’d seen her around, fundraising and things… or something along those lines.

Kate contacted me last April, after I started blogging about Mum’s illness, saying:

Im so sorry to hear about your Mum. She helped me through some very tough times…

In fact Im really missing her support now & I almost feel disloyal for seeing another pall care cons.

I had no idea Mum had treated her and when I mentioned it to Mum, Mum brought up the whole doctor-patient confidentiality thing which I’d forgotten… I later read Kate’s books and, though Mum wasn’t mentioned by name, with the knowledge that Mum was her consultant at times, I could sometimes see the Mum I knew coming through.

She then contacted me again a week before Mum died:

Dear Naomi, reading your latest blog was heartbreaking… Just wanted to let you know Im thinking of you and your mum. K xxx

We had a short conversation. She asked me to pass on to Mum that she was still defying the odds and was in their thoughts. Mum wasn’t particularly responsive at the time, but I told her and she smiled.

After Mum died, she messaged me again:

Oh I’m so sorry to hear that Naomi. Thank you so much for letting me know. She was a fab woman your Mum. Never forget that. Huge hugs & love to you & your family xxx

And then, later on:

Have been with my girlfriends today – not something we manage as often as we should. We were planning our Christmas get together – an unexpected event for me – but found myself stopping & thinking about you & your Mum. How tough Christmas will be… Your blog is absolutely beautiful. Thank you for speaking out about dying & grieving so eloquently. Thoughts are with you xxx

I know that Kate caused waves in some of the work she did. I know that some medics weren’t always happy with the way she tweeted things, or what she wrote. I also know she raised a huge amount of money for charity, got people talking about death and end of life care, and highlighted the importance of clinicians introducing themselves (#hellomynameis).

Hearing of her death is upsetting. For me, it is another link to Mum which has been lost. But from a wider perspective – it’s another life lost to cancer. Another person who’s life has been cut short due to this horrible illness. Another grieving family who are left to make sense of the nonsensical. I hope that they can take comfort in the fact that Kate was loved by many, and that she made a difference.