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.
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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.

The Sound Of Grief

Mum was a bundle of energy. As I frequently say to people – I’m not sure I remember her ever really sitting down until she became ill. She was always moving, always on-the-go, always running from one place to another doing various activities.

Our house was always a busy one; three children, a handful of friends, a collection of musical instruments, a pet or three, and every now and again an extra ‘borrowed’ pet. It never was going to be the quietest of places.

If there wasn’t a hum of voices filling the house, there was music. Mum played the saxophone (foghorn) and was part of a band. My Dad and one of my brothers played the piano and we had a drum kit in the lounge. When people weren’t making their own music, the CD player was on in the kitchen – Mum often put Caro Emerald on and danced round the kitchen whilst cooking or baking. There would normally be music coming out of the lounge, too, and at least one bedroom.

When Mum first became ill, the house only became noisier. I had moved to uni by that point but would come home most weekends and whenever I did, there were visitors. I don’t think there were ever just five of us in the house. Mum’s friends from uni would visit, or some family would have travelled up North. At the very least there would be some friends from the village or a neighbouring town popping in.

A year after Mum was diagnosed as terminal, she ended up in a coma in hospital. At that point, she was silent, but her room wasn’t. You would imagine someone being in a coma in the middle of the room might result in a bit of a sombre atmosphere, but it really wasn’t. We would spend most of our time there with various combinations of family and friends. It was almost a happy atmosphere – people were sharing stories and memories. There was laughter. I remember tearing up at times, but on the whole I remember feeling like although we were separate from the world and time lost all meaning; laughter and smiles prevailed through it all.

Once Mum came home from hospital, the noise subsided. We still had visitors, people still came to see her – in fact I only remember a single day between her coma in February 2015, and her death in October 2015, when I had some time alone with her – there was always someone around. It was quieter, though. Visitors would sit in the lounge with Mum just talking, or with the TV on in the background. There were occasions when it was busier and louder, but on the whole I remember it being more still.

On the one day that I was alone with Mum, the silence was almost loud. Mum slept for most of the morning. There was nobody else in the house. It was still and so quiet. It no longer felt like my house.

I remember staying over at a friend’s one night, and in the morning we were woken to a clattering in the kitchen and the sound of general family life. Until that point I hadn’t realised how much my house had stopped sounding like a home.

When Mum died, the house was full of people. The church was full of people. There was hardly space to breathe at times. There were words, there was music, there were children running around, adults talking, people generally catching up and exchanging memories and condolences. People speak more softly when someone dies. I’m not really sure why, but they do.

Mum died in October, her funeral was November and then it was Christmas. Throughout all of this time I carried on living at uni. The house I grew up in wasn’t home any more. The sound of it was wrong. Life became quiet. Having too much noise put me on edge and made me feel horrible – grief sensitised me to sound and I just couldn’t deal with anywhere particularly busy or noisy.

I’ve well and truly moved out now, but each time I pull into Dad’s drive, I still expect to see Mum running around the kitchen or working in the office. The house doesn’t have the ‘right’ sound any more.

Mum had so much life, love, and passion in her. She lived every single day. She tried new things, loved her job, cared for each of us, had fun with her friends, and picked up various hobbies. She wasn’t quiet, and neither was her personality.

Grief is so loud yet so quiet at the same time. Slowly, slowly, I am able to listen to, and enjoy music again. I can have the TV and the radio a little louder. Some songs or sounds will still set me off. I’ll be trundling along and out of nowhere a song or a sound will hit me, my chest will explode, and I will cry and cry. That can often be a relief in a strange sort of way, though. Sometimes you really need to cry.

I’m not ‘there’ wherever ‘there’ is. I will never live another day without grief, but I am learning to live alongside it. It doesn’t go away, but it does get better. The ‘I can’t breathe’ moments become further apart. I’m able to listen to music again, I finished a book the other day for the first time in years, I can put the radio on, and at times I can play the music super loud in my car and have a good old sing-a-long.

One day, I will have my own kitchen, I will embarrass my family by cranking up the CD player (or whatever magical invention exists in the future) and singing along to whatever music takes my fancy. I will have a house that is a home. It will have its own sound. It will be full of love and light, just like Mum was.

This was originally written for Let’s Talk About Loss, a safe space to talk through taboos and address the reality of losing a parent when you are young.

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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

Children Can Bring Light To The Darkest Of Days

Cycling home today, I saw a lot of Mums pulling various uniform-clad little ones across traffic lights, book bags trailing behind them. I also saw a couple of late-teens-early-twenties-aged-child-looker-after-ers laughing and giggling with their rabble, jumping and skipping along the road.

I love seeing it, it’s so lovely to see people happy and enjoying life.

It does make me miss the various little people (and slightly bigger people) I’ve been lucky enough to take care of, though. Growing up, I babysat for the vast majority of the village from the age of fourteen (being a Beaver Scout leader and having younger brothers helps with that!). I’ve lost count of how many lounges I’ve sat in, stories I’ve read, and games I’ve played.

Through volunteering, there are even more hours spent looking after children to add up. The hordes that have come through Beavers, Cubs and Scouts (at one point I helped out at all three, spanning two different troops), and those I worked with when volunteering with Shout Out Leeds, with Team v, at a school or two, play groups and church.

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When working in a toy shop for a few years, I met a lot of kids, some very briefly, but there were other more regular shoppers who I got to know quite well. As a student ambassador for a couple of years, I interacted with children and young people of all ages. With many it would be a ten-minute chat, or occasionally a day doing various activities. But residentials were the best bit of the job: whole weeks getting to know some incredible young people, being privileged enough to share their stories, hear their worries, and listen to their hopes and dreams. There are so many young people who I got to know really well, but who I will never see again.

Out of all of the children I’ve looked after, there are a couple who have, perhaps, made the biggest impact on me.

The twins who showed me that even though the world can be ridiculously rubbish, there are still smiles to be had, and Peppa Pig can fix almost anything. They showed me that what my body looks like doesn’t matter, so long as it’s healthy enough to take them swimming. They reminded me that baking can be fun, giggles are infectious, and that mess can be joyful. Their Mum recognised that things could be rough, cancer was rubbish, and hugs from little people were sometimes all that was needed to calm a storm.

The three children belonging to my friend. The youngest, born just a month after Mum’s terminal diagnosis, reminding me that life is cyclical and though people die, and it’s crap that they die, people also live, people are born, and life is precious. The middle one has enough energy to keep a power station active for a week and an imagination to rival that of acclaimed writers, who continues to show me that dreams are important and life isn’t as serious as you think. The eldest, an incredible footballer with a big heart, always outside playing with his friends – a continuous reminder that life is greater than these four walls.

Finally, the two boys who I spent Summer, Easter and Christmas with for three years. The boys who baked with me, swam with me, built dens and Lego models with me, ran down to the river, came to the library and tackled buses with me. The boys who took me to the Great Yorkshire Show, the Royal Armouries and Leeds museum. The two boys who let me kiss things better, let me hug them, let me care about them through a time when the world felt so uncaring. However rubbish my night had been, whatever crap was going through my head, however downright awful I felt, they never failed to lift my mood, show me how to smile and bring light to the darkest of days.

Kids are incredible (as are many of their parents!). I’m not entirely sure how/why their parents decided I was responsible enough to keep their little people alive, but I’m so glad they did. I don’t know how many of them will remember me when they are my age, but I will remember many of them.

Summer has come to a close, and I haven’t done a single day of childcare. It feels very odd. I’ve finally emailed my student ambassador job to let them know I’m not coming back, and had a lovely email in response. I miss some of these children a huge amount. I hope that I can see some of them soon (though a couple of them moved to Guernsey which is mildly inconvenient). I’m growing up and moving on and it’s impossible to take everything from my past to my future, I guess it’s just about recognising that these experiences will always be a part of me and my life – they have shaped me and helped me grow into the person I am today; they have got me through some really tough times. Moving forwards is hard, leaving things I enjoyed and loved is hard – but ultimately, it’s right.

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9 Months Too Long

Dear Mum,

It’s been 9 months since you left and to be honest, it’s about time you came back. I’ve definitely learned the lesson of how fab you are and how much I need you in my life; I promise to never forget that ever again. I just need you to come back.

Sometimes I think it’s all maybe getting a little easier, but then I’m hit with another huge whallop of grief – determined to knock me down and keep me there. I have to do whatever I can to find some air again and claw my way out of the grief vacuum. It would be far too easy to drown in it.

It’s sunny now. Summer is here (in true British form of ‘is it going to rain today? 1186773_429236453855696_2130074871_nI better take a coat just in case’). Last summer you hardly left the house – it was too painful and tiring. The summer before I barely remember, I think you must have been working, and I was too. The summer before that we all went away as a family, climbing up mountains in France and mountain biking down them. It was boiling hot but there was snow at the top of the mountains. There are photos of us standing in snow in t-shirts.

You loved summer. You would come home on time to watch Wimbledon (unlike the rest of the year when you would often work late), then would finish your work later that evening, after ‘Today at Wimbledon’ had finished. We’d play table tennis in the garden, or actual tennis down at the local tennis club. We’d go to places on weekends sometimes; Yorkshire Sculpture Park or Harewood House, or even just have a potter around Wetherby. 166 (2016_04_23 16_52_32 UTC)You would normally take a couple of weeks annual leave and we would go somewhere – France for many years, but Spain once or twice, or different places in the UK.

I remember one day last summer really clearly. It must have been summer because I was wearing the dress I’m wearing today (I hadn’t realised that until I thought about it just now!). Dad was at the cottage so I offered to come home and be with you. You woke up mid-morning. I helped you to the bathroom and found your medication that Dad had left out for me. You thanked me for looking after you – you had kept insisting that friends could come over or carers could come round – but that morning you told me you appreciated it being a family member. In that moment I wished more than anything that I had my life more ‘together’. I wished I’d passed my driving test so I could have come over more and done more. I wished I was more sorted, more settled, more able to help. I wished I could have spent more time with you.

I miss you.

My driving test is coming up – I’ve finally almost reached that point (let’s hope I pass…). I’m settling down. I’ve got a better work-life balance. I might have been more able to help this year. But it’s a year too late.

Nine months is no time at all, yet in my head it stretches on forever. It’s not even a year. In the grand scheme of things it’s nothing, but it’s a nine months which have perhaps been harder than any previous nine months that I’ve ever lived through.

So, it’s about time you came back now, you’ve been gone long enough. We’ve learned to do a few things without you – we’ve learned to make a decent Christmas cake, we’ve learned which suncream to buy, we’re learning how to have fun again. E managed to get off on a school trip with all documentation intact, J has finished a year of work without killing or maiming any children, Dad’s kept the house going and the boys alive. We miss you, though.

I miss you, Mum, it’s been nine months too long and the sun is screaming out for you to bustle through the house and throw us all outside.

Lots of love,
Xxx

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