Mum died on 15^th January 2019. Her death is the most heart-breaking, life-affirming, devastating, relieving, shocking, inevitable, tearful, love-filled experience I have ever had. And I am writing about it not because I want sympathy, or likes or to shock. But because I believe that this is something that as human beings, we need to talk about more.

No one gets out of this thing called life, alive. But so few of the words we speak in our lifetimes even begin to deal with the reality of how it ends, or that it ends at all. We owe it to ourselves to change that, to speak up, even and especially when it’s really tough, because it will make our finite time on this planet better.

So for Mother’s Day, I have written about my mum’s death. It is my story, and I am acutely aware that of the millions of people who have lost someone close to them or will lose someone in the future (that’s ALL of us by the way) that everyone’s story will be different. There will be things in here that resonate and others that don’t. But I believe that talking about death can save lives. It doesn’t stop us from dying. In the end, nothing does. But it can stop us from wasting the precious days we have. It helps us through grief. It allows us to carry on. To keep living. That is why I am going there.

So firstly, the facts.

Mum had a rare degenerative neurological illness called Multiple System Atrophy (MSA) which is as awful as it sounds. Over time all of her body’s autonomic functions – the stuff you do without thinking – breathing, swallowing, blood pressure, bladder and bowel function – that kind of jazz, start to pack in and eventually stop functioning altogether. It is incredibly complex to treat and currently has no cure.

So we knew mum was dying and we had time, as a family, to start to get our heads around that. We had time to say goodbye – something, with retrospect, I am grateful for every day even though it was so hard to see her suffer for so long. And yet death, when it came, still shocked us.

Death isn’t linear. We had so many moments of, ‘Is this it?’, mercy dashes home, heart-wrenching calls. I packed funeral clothes for myself and the girls three times (and each time the outfits changed as seasons changed and the girls outgrew things). At the point she was given days, perhaps even hours to live, she carried on for two weeks and one day. It was extraordinary and yet so her. She was as strong and as stubborn in dying as she was in life. It was an endurance event. And one that we weren’t prepared for however much we thought we’d readied our hearts and minds.

Mum dying reminded me and my sisters of labour. The waiting, the other-worldliness of time (you could blink and hours had passed in that hospital room, and on other days minutes would feel like lifetimes), the recording of time between breaths as mum got weaker were like counting down contractions, the epidural-like calm of palliative sedation, the hand squeezing as she lost the power of speech, the usual barriers between humans broken down because something much, much bigger than all of us was happening.

And mum died in the same hospital where we, her four children, were all born. We could see the maternity unit where we came into the world from her window. The same window we opened when she died, to let her go.

I remember sitting there with one hand on mum in her final days and one hand on my pregnant sister’s tummy and feeling like I was holding death in one hand and life in the other.

Uncanny, sometimes uncomfortable, sometimes comforting, these things made me realise that life and death are not as binary as you think.

The night that she died I felt numb. I didn’t cry for the first 24 hours and I wondered what was wrong with me, but when the tears did come they came in waves. Waves of heartbreak and relief, emptiness at what is gone and fullness with the love that is still there, that doesn’t die.  I experienced emotions, and still do, that I didn’t realise could co-exist in exactly the same moment. Grief is the most nebulous, strangely familiar thing I have ever felt. It is a daily reminder that my world has shifted on its axis but that I am alive.

Mum was so altered by her illness in the end, that we’d started to forget the person she was even before she was gone. We’d started grieving, but not fully. So when she died, and we started to wade through the fog and scramble around for memories, we started to remember who she was, and we sort of brought her back to life a bit. The trauma of the final months, weeks and days still hold a disproportionate space in my heart and head. But I trust that over time, that will diminish and the person she was for most of her life will be what I remember most. Writing the words for her funeral, patching together the different memories we could reach in those early days after her death with my sisters and brother helped, in a strange way, to bring her back to us just as she left us.

Mum had had time and the bravery to plan her funeral. I had sat with her and the vicar, months before talking through what she would like but managed to persuade her to stop short of confirming the exact timings and the seasoning on the sausage rolls. Because the truth is that a funeral is a careful balance between what the person who has died would have wanted and what the people who are left behind need. Mum died knowing that we understood the spirit of what she wanted but that we needed to put our mark on it too.

When it came to her coffin, I mean that literally. She wanted an eco coffin. We stayed true to that. But we painted it. With our hand prints, the grandchildren’s hands and feet, the dogs’ paw prints. There will never be another one in the world like it. It was covered with the unique finger prints of our love. It was all the colours. It made us cry and it was wonderful. And she would have loved it.

We decided not to have a hearse. It just didn’t feel right. Mum went to her funeral in a VW van.

As the mother who always tricked us into going on walks with the promise of a picnic/pub that never materialised, she would have beamed that we managed to shoe-horn a 5 km walk into her funeral day. Over 200 people joined us on the stomp between the church and her after party. There was a rainbow.

I’m telling you these things not because I think everyone should do them, but because making mum’s funeral unique to her and to us, not following a pre-set formula, challenging some of the norms, pouring a bit of mum into the details, made it a cathartic and genuinely amazing day. It was absolutely heart-breaking but it was also so full of love that I could have burst.

In the end, love is what matters the most and there was so much of it that day. And it is still here even though she is gone.

Love is what has kept me going. Love for her, for the human beings I still have in my life, and for life.

Of all the messages I received after she died, this, from one of her pals, got me the most:

‘I can’t begin to tell you how much she loved you all… You were her life’s work and love. So rest assured she is with you night and day guiding you in your thoughts and in your heart’.

And she is there.

In Switzerland, a place she never visited because she was too sick after we moved here, but where the mountains, the fresh air, the sunsets, the life we are making have her etched all over them.

In the perfume we both wore and I still do.

When I squeeze into her jeans (I think I wore them almost every day for a month after she died).

As I raise my girls, not in exactly the same way she raised me, but with her unspoken influence and the same ferocity of love she held for me. I see me through her eyes when I look at them.

When I adventure up Enid Blyton’s faraway tree with my eldest, reading the same bedtime story mum read to me. Fanny may have had to change her name to survive today, but the memories are palpable. Mum is everywhere in that book.

When I play the song from her funeral (Amazing by One Eskimo – listen to it, it does what it says on the tin), and my youngest starts dancing to it and the sun streams in and tears spill down my face while I am mopping the floor (not as well as she would have), and her death makes me realise that these are the moments that life is made of.

The ache I talked about at her funeral and still feel – sometimes a dull ache, sometimes a sharp, unexpected one in the cheese aisle of the supermarket – is not solely loss. It is the echo of a life lived so fully, and a person loved so much. As well as the pain of losing her, I feel so acutely how lucky I was to have had her and to have called her my mum.

The pain I feel is proportionate to the love.

Love and heartbreak, life and death exist side by side. We can’t have one without the other.

Against the backdrop of her heart-wrenching death, I have learnt that palliative care teams are some of the most wonderful people on the planet, that end-of-life doulas exist, that there are extraordinary people dedicating their lives to making death and grief more bearable*, that funerals can be creative and brave and as much a part of the healing process as counselling or time. That you can find the words to describe how it feels and to help you find a way through it. Maybe not in French at the nursery doors, but in your mother tongue. That experiencing death is an essential part of what it is to be human. That how you respond to it shapes you deeply as a human being. That it is life-changing, but not solely in the devastating way you imagine it is going to be.

That is my story. And this is not the end.

But I know there is one and the way I fill the pages and the days until that time is the most important decision I have ahead of me.

 

 

*These are some of them Atul Gawande , Life. Death. Whatever. , The Griefcast , Anna Lyons , Poetic Endings , Celia Kitzinger . And he is no longer with us but if you read one book, make it When Breath Becomes Air by Paul Kalanithi