I remember the day of graduation like it was yesterday. It was 2015, I’d worked really hard to achieve a First and I couldn’t wait to celebrate three years of hard work finally being over! I had bought a new dress, the sun was shining and I couldn’t wait to see everyone who had survived the course with me and cheer them on.

I remember getting a message before I left home saying that my friend Beth wouldn’t be attending. Her sister, Emily, had passed away that morning.

I remember welling up, trying to imagine how Beth could be feeling, but of course I never could. How can anyone imagine a grief like that? The foundations of the day seemed to shake upon reading that message. We were all supposed to be there celebrating with each other, but one of our group had just experienced the worst thing I could imagine.

For me, the day went on because it had to. I left home, I graduated, I went out for my meal and drinks with my family, I celebrated.

I can’t imagine what that day was for Beth.

Beth now lives in Stalybridge, Cheshire, with her fiancé Ed. She is an English teacher in a local secondary school and has a MA in Educational Action Research.

When I asked Beth if she would let me interview her about grief, I knew that it would be an emotional read simply because of the subject matter, but I think I was naïve to how beautifully Beth would speak of Emily and how her description of grief would be so hard to read but would also be so poignant and beautiful. In the bio of herself that Beth provided me, she wrote mostly about her gratitude to those in her life. She said ‘I’m extremely lucky to have an amazing, understanding and caring family and I’m also surrounded by some wonderfully supportive friends. I’m using these chosen adjectives to describe the people around me because without them, I would be totally unable to peel my back off my mattress every morning knowing that I can face my day.’

Whilst this is undoubtedly true, for this interview, Beth should take full credit. The bravery and searing honesty of these words is all down to her. Her portrayal of grief and loss isn’t fake or filtered or downplayed to make it sound less harrowing – it is real. It is important that we talk about grief in this way so we know that whilst it’s not pretty, it’s okay. It’s okay to struggle, to be angry, to need people, to push people away, to scream, to shout, to hurt… it’s okay.

Beth – your words are beautiful. I feel lucky to be able to share them with the world and luckier to be able to say that I know you.

In your own words, how would you describe Emily?

I always feel that whenever I try and describe Em, I fail to do her justice. The main thing that always drives my descriptions however is my desire to ensure she is never remembered simply for her illness. To me, despite it being what took her away from me at such a young age, it was only 1% of her being. Thinking back, I don’t remember a time in my life when Em wasn’t there. After all, I was only 2 when she arrived! (She constantly told everyone that she was the planned one- I was the accident!)

It’s hard to describe Em without also including my Mum. They were so close that it’s impossible to separate them in many ways. I honestly believe that without my Mum being the determined, strong and impressive lady she is, we wouldn’t have had Emily in our lives for as long as we did. It took 13 months for Em to be diagnosed with Gauchers, and those months were filled with my Mum having to argue over and over again with medical professionals that she wasn’t just suffering from post-natal depression, and that Emily was ill in some way. (There’s something to be said here about the way society (particularly men in powerful positions) treat women- but it would end up with me doing what my students call ‘going off on one’).

We grew up together, playing, joking, messing around, enjoying holidays together, winding each other up massively- all the normal things. Laced through all this typical memory making however was the bi-weekly treatments to replace her missing enzymes that were replaced through a drip, the coughing and throwing up, the nebuliser because she was struggling to breathe, the eye operations to try and straighten her vision. She wore patches over her eyes, she sometimes used a wheelchair and she had an enlarged spleen. She needed to be careful with her bones, she needed support in school and she would always catch colds easily.
Despite all these difficulties, Em had a lovely childhood, playing with her friends, attending parties and going on holidays.

I knew from being very young that there was no cure for Gauchers. Our parents were always honest about that. When Em was seven, she went through a drug trial. Well, we all went through it, but I believe it was hardest for my Mum and Em. Our parents had just broken up, and it was an extremely harsh, unforgiving process that took a great toll on all of us. There’s a particular memory I have from that time, of all three of us travelling down to London on the train in the summer in perilous heat. We often travelled down to visit Great Ormond Street Hospital. The train broke down and Emily was sick everywhere. It was horrific. She was so very poorly. The sheer determination and love of my Mum (and the never waving support and dedication of my grandad and grandma) got us through those months. As I’m sure is evident by now, the drug trial didn’t work. The cure wasn’t found.

Em loved her secondary school and became a typically moody and grouchy teenager! She tried to go to college, just wanting to be like everyone else her age, but her medical issues made it impossible. Em was much braver than me – obviously that goes without saying. She would say ‘she had balls’. Her spine began to push outwards and to the side, giving her great pain and an atypical appearance, but she simply put her eyeliner, mascara and lip gloss on, painted her nails in electric sparkly blue, and went out with her chin held high to face the world. She was fierce.

I could go on and on for pages describing Emily – anecdote after anecdote, memory after memory. To sum up, she was the most loving, individual, brave, adoring, forgiving, loyal and thoughtful human being I have ever known (and will ever, I believe). Towards the end of her life, struggling with the heart breaking realities of her illness, and the impact it was having on her body and mind, she began to lack confidence in her beauty. All of this is entirely understandable, but to me, she was (and still is) the most beautiful, and most important part of my life.

Your description is perfect. Emily sounds like the most beautiful soul. What happened on the day that Emily passed away?

Emily died in the early hours of the morning, on the day I was supposed to graduate for my BA Hons course. The episodes in the weeks prior where she would say the most vile, hateful things, her inability to stay awake for long and her constant fitting had informed us that her brain cells were slowly being defeated by the Gaucher cells. The enzymes my Mum gave her every couple of weeks were incapable of crossing the blood-brain barrier. Knowing that the enzymes were powerless against the progression of the disease, Emily told my Mum she wanted to stop her infusions. I cannot fathom the inner-deliberations she had been having. My Mum agreed to stop them, and initially I was extremely angry with them both (just like I had been when they both went and got tattoos without me!) Over time, I have come to understand just how insanely brave they both were to do this. Emily wanted some control over her life. My Mum gave her that. It was Emily’s choice, Emily’s decision and that it was our duty to give her that and to respect it. Emily lived with a multitude of excruciating pain for the majority of her life, and now she is free from it- it is our turn to bear the pain of no longer having her. It seems only fair.

Our dresses were hung on the outside of my wardrobe in preparation for my graduation celebrations which Emily had been planning for months. Mine was black, Em’s was floral and very bright – summing up perfectly how different we were.

Before I’d gone to bed for the evening, Em had been suffering numerous fits. They became so bad that nurses were called, and they helped my Mum to administer drugs to manage the shaking and pain coming over Emily in waves. I came back downstairs and could instantly tell something was wrong. There was an unusual atmosphere. I sat and held Em’s hand. She had a light machine which you could play music through. My best friends had bought it her as a gift for when she couldn’t sleep. I played Disney songs and Eva Cassidy’s ‘Fields of Gold’ through it.

My mum called me into the other room. She took my hand. I couldn’t read her facial expression.

‘I think Emily is going to die tonight.’

I walked back into Emily’s bedroom. I held her hand. I stroked her hair. I told her that I loved her and I didn’t want her to leave. Her eyes were closed, shaking behind her eyelids. I knew she could hear me. I needed her to know that she was everything to me. I could no longer speak. I couldn’t move. I looked at her, and propelled my thoughts towards her. I love you, don’t leave. There’s no me without you. You can’t leave. Please stay. We’ve got so much to do together yet.

A thick, green sludge ran out of her nose, and I screamed for my Mum. She came in swiftly and wiped it away. I seemed to blink, and my entire close family were in the room. Emily started rasping, and there were large gaps between her breaths. I ran outside, and tried to be sick out the back door. Nothing would come up.

I went back into the room, and sat at the end of Em’s bed. My mum and dad held her hands. My Mum told her to go and be with our grandad, and Emily took her last breath. The purest silence followed. I sat with the rest of my family at the end of her bed. My Grandma put her hand on my shoulder.

Can you describe the affect of grief on your life?

Initially, life became a total blur. Hordes of people came traipsing through the house. I slept, ate a bit, drank little amounts of rum and cried a hell of a lot. Not like crying I’d ever done before. More of a howl really. It was worse at night. It was like I’d forgotten how to be me. I just existed. I developed really deep depression when I was half way through my teacher training- which foolishly I threw myself into to distract myself and give myself purpose and routine. This was a really horrendous time for me, dealing with side effects and trying to find the right tablets to help me throw myself out of bed to face the day. As cliché as it sounds, I will forever be massively grateful to my family and my fiancé, Ed. I couldn’t have got through this time without them.

Before we lost Em, I thought that grief was a linear process, but it really isn’t at all. Grief is the most bizarre experience, and there is no rhyme or reason to it. It’s completely illogical, and can’t ever be fully understood. This is something I have had to come to accept. It has changed who I am – and I have had to learn to not deny that. It lulls me into a false sense of security when I’m having a good few weeks, only to be brought hurtling back to earth when a morning comes when I can’t get out of bed because of my anxiety, or I have to leave a party early because my heart starts beating too quickly and I need to be in my own, silent house. I have trouble controlling my emotions sometimes now, especially if I have alcohol and, although I try to be careful with this, it’s difficult.

I have found that this means I can only surround myself with people who truly understand. Friends and family who think nothing of me leaving if I’ve had enough. Friends who say ‘it’s okay, do what you need to’. To my friends and family, I’d like to say, thank you for sticking around because I know that I’m not always easy to be around – but I won’t apologise for it. It’s just who I am now.

Your family, friends and fiancé sound like the most incredible people. When we talk about grief, often people talk about ‘coping’ even though there is a lot more to it than that. How did you ‘cope’?

The first few weeks after Emily died, I didn’t cope. Ed and my Mum basically pulled me through the debilitating fog that had become my life.

Then, I coped by drawing on the collective strength of the rest of my family who were always round cooking for us.

After that, I gave myself little tasks to focus on- making the video for Em’s funeral, going to find the orange cloth to go over her coffin and closing her bank account. Bigger tasks followed, like my PGCE, me and Ed moving into our first home together.

Trying to keep myself busy all the time actually ended up becoming entirely the wrong thing. I have had to learn to listen to myself, and to try and be gentle. Sometimes, I need to stay in and do nothing, and that’s okay.

I also had to deal with my anger. I was livid with Emily’s ‘friends’ who hadn’t bothered with her in the last few years of her life, because it was hard. They all seemed to be crawling out of the woodwork to feed on our grief. I had to learn to accept this.

I can imagine that the anger towards people who has shied away from the realities of Emily’s death felt overwhelming at times. What about your own relationships with people – did they change?

They changed a lot.

My relationship with Ed became so much stronger. We had only been properly dating for a few months, and it would have been the easiest thing in the world for him to break up with me, and though it would have been extremely painful for me, I wouldn’t have blamed him. He didn’t run away though, he did the opposite. He came to the house with flowers for my Mum, he sat with me in the garden. I remember wearing one of his massive checked shirts for a week (no idea why). He cleaned up spillages when I would be sick half way through drinking a cup of tea for no apparent reason. He held me while I howled through the night. He cut up various foods into little chunks to try and get me to eat. He held my hand all the way through the funeral. He was there, whenever I needed him, and it was often.

As I have already mentioned, I grew further away from some of my friends – but I can’t attribute all of these to grief. Everyone changes as they grow up, and it is a fact of life that friendships change.

My relationships with my close family, my Mum, my maternal Grandma, my little sister Molly and my dad and step-mum are very much the same as they were before losing Emily. I have always loved my family very much. The major change was moving away from the family home, as we had the unusual set up of three generations living together. We did this so that my Gran could help look after Emily when my Mum was at work. It was a lovely time for us, though it wasn’t without arguments at times!

It sounds like the people who are still in your life now are the ones worthy of being in it. Do you still do anything that ‘connects’ you to Emily?

1. In my head, I talk to Emily every single day- I tell her about everything that is going on, and I ask her for extra strength when I need it- which is often!

2. I write to Em in a journal, to keep her informed about what’s going on.

3. I still wear Em’s Pandora March birthday ring, which I never take off and look at often.

4. Every time I watch a Disney film!

It sounds like Emily is still very much a part of your life and always will be which is beautiful. Has losing Emily changed the way you approach life?

I try to ensure it does by catching myself complaining about my job, or my car, or the weather, or how tired I am… I remind myself, I am alive though.
I haven’t had epiphanies leading me to decide that I need to travel the world and do dramatic things like sky diving – instead I focus on trying to make the most of everything I am doing. To be thankful for everything.

To lose someone is a wholly negative experience, but are there any positives that you have been able to take away from this?

That I am loved, and that maybe, by talking about what has happened, I can help someone else even a little bit.

That though we lost Em when she was 19, we never knew how long we’d have her for – and we had a fun, love-filled 19 years. I wouldn’t trade those for anything.

That even though I can’t see or speak to Em anymore, and I can’t articulate how painful this is, she is at peace, and is no longer suffering. As my Mum always says, it’s our turn now.

What advice would you give to anyone who is grieving?
Just be. It is enough, and your grief is just that- yours.

If you could sum up your outlook on life in one statement, what would it be?
It’s a privilege to be breathing- what will I do today?