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.

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Please Don’t Limit Your Unity

Today is World Cancer Day (apparently we’re having all the awareness days this week!).

The hashtag for the day is #ActOfUnity.

I think it’s wonderful that people are coming together to stand in solidarity with cancer sufferers. Cancer is scary, cancer is a life-wrecker, cancer is, let’s be honest, a bit of a dick.

I struggle with days like this, because thoughts go round and round my head: ‘why did others recover?’, ‘why didn’t Mum?’, ‘why did this happen?’, ‘why isn’t she alive to say “I kicked cancer’s bum”’, ‘why did this happen’, ‘why, why, why’. Then I feel angry, frustrated, and go and look at puppies or something instead.

My plea, for this World Cancer Day, is that in your ‘unity’, you include friends, family, and carers. Not just those ‘actively’ affected, but also those who have had someone close to them die from cancer. In fact often, a few months after the person has died is the time when they need more support, because that’s when the busyness ends. When you’re not spending your life running between hospital/uni/work/home/sleep/appointments/everything, and then home/crematorium/funeral planning/funeral/family/uni/sleep, that’s when everything hits you. It doesn’t just hit you once, either, it hits you time and time again.

When Mum was diagnosed, I remember emailing a well-known cancer support charity asking what help they could offer me and my family. Their response? They couldn’t offer anything unless the ill person triggered it (and Mum wouldn’t have done that – her and Dad decided given her job we had a lot of support already). I understand where my parents were coming from, I understand that the charity has to have cut-off-points, but it was still a tricky response to hear, particularly because if I had a pound for every time someone had told me to go to them over the last 3 years, I’d have a deposit for a mortgage. Everyone assumed they would offer help to those affected-by-extension. But they didn’t. Why was I left out of their compassion?

Cancer doesn’t just affect the ill person, it affects all of those around them, and it keeps on affecting them, even after the person is in remission, even after the person has died.

I didn’t used to get angry. I didn’t used to panic that my family were dying/dead. I didn’t used to feel sick when my phone went off. My asthma didn’t used to be this bad (a lesser-known side effect of stress). I used to be able to sleep in my childhood bedroom. I used to be able to be able to see cancer adverts on TV and ignore them. I used to be blissfully bumbling through life thinking I had all the time in the world left with Mum. I used to be able to get angry at her and know she wouldn’t leave. I used to be able to give her a hug. I’m terrified of leaning on anybody because if your Mum leaves, then who won’t?

I’m not writing any of this to make anyone feel sorry for me, or because I want anyone to offer me life-changing advice. Life happens. There’s nothing anyone could have done to prevent or cure Mum’s illness. I’ve had a lot of support through it, even now, because I’m really, really, lucky. My family are wonderful, Hope Support do a group Facebook chat every two weeks, my GP continues to either help me through life, or drag me through it depending on what mood I’m in, the welfare tutors at uni were brilliant, uni counselling helped a lot while I was there, my uni college administrator is an excellent hug-giver, I have some incredible friends who understand that sometimes I need to talk, sometimes/always I need to craft, and sometimes I need to just be quiet, and my work are super supportive.

Having people around you makes such a difference, even if you don’t want them around you, just knowing that they’re there can help.

So this World Cancer Day, please do unite. But please don’t limit that unity to those with a cancer diagnosis. Please stand in solidarity with the family and friends of those affected by cancer. Please stand in solidarity with those in remission from cancer. Please stand in solidarity with those who’ve had a loved one die from cancer (however long ago it was). Cancer doesn’t just affect people while it’s happening, it affects them for the rest of their lives.

The Moment Everything Changed

It’s ‘time to talk day’ tomorrow. I was volunteering at a time to talk day event when Dad text me asking me where I was and came to pick me up. He told me in the car that Mum’s cancer had come back and that there wasn’t a cure. From that point on my Mum was no longer invincible and everything changed.

Mums aren’t supposed to die, or to get sick. Especially not healthy Mums. They’re supposed to always be there. They are one of the few people in life who don’t get fed up with you (or if they do they’re not meant to show it), who put up with all of your flaws.

In that moment everything changed.

Dad told me that Mum’s cancer had come back. That there was no cure. We were driving from the White Rose Centre to home. I didn’t cry, not really. I looked out of the window. We drove home. Mum and the boys were there. We didn’t talk about it.

I went back to uni that night. I started crying and didn’t stop. I think I maybe text one of the people I was living with in halls. I text a friend from home who drove over to be with me, with another friend. The two of them sat with me until the early hours of the morning. They tried to persuade me to go home, but I couldn’t. They helped me tell the other people I was living with. The next day I sat with a welfare tutor for hours (even though it was a Sunday). I cried, I talked, I sat in silence. I tried to make some sense of it all. We wrote a list of all of the people I needed to tell.

I miss her and sometimes I need her more than others. And given that I’m now 22 and rather more independent, I probably wouldn’t be living at home and wouldn’t be able to crawl into her bed, like I did at 16/17 when things were rough. But I would have been able to text her, and to be honest some days I might have gone home for the evening and got a Mum hug. I miss her. Some nights are long. Sometimes everything feels dark and twisty. And sometimes at 22 you still really need your Mum.

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