25

We have always made a big thing of birthdays. Always a birthday cake with candles, always a big fuss and usually a birthday meal together. Ellen’s birthday parties were always huge events…… The LUAU party….. limbo dancing, palm trees, grass skirts and flower garlands. The KARAOKE party, The FAIRY party…… Moving on to 19 years old the indoor festival … ‘Please can I have a fantasy fairy forest’? We did it together with carpet roll tubes and ply wood, MDF and paper mache, rolls and rolls of organza fabric and a sprinkle of glitter. Often from a very young age it was a joint party with Caroline her lovely friend as your birthdays are a week apart. The 21st birthday party was legendary….. ‘Please can we have a MASQUERADE BALL’? There was a LOT of planning for this one including a meeting at a cafe in Saltaire. I had to remove little Noah from said meeting because of boredom issues but I did teach him to roar like a lion so all was not lost. There were cakes and all manner of food for the feast (Largely due to Mary, Caroline’s mum), magical touches made to the room, live music and a fabulous DJ. The perfect evening.

Today is our beautiful girl’s 25th birthday. Ellen was due on the Summer Solstice in the summer of 1994 but she was fashionably late and born on the 23 June. I can remember the fabulous full moon in all its glory as I drove myself to the hospital in the early hours of the morning. My magical little (summer solstice) moon baby.

I often wonder what you would be doing now. Where would you have travelled to over the last two years? What would your wedding have been like? Would you have been wearing one of those magical Rawrags dresses that I showed you that you loved so much? We would have planned your wedding together – huge plans involving lots of making, glitter (of course) and lots of nature. Roger and I would have been so proud as we ‘gave you away’ to one of the nicest people we know. I do also imagine the horror of you finding out that glitter is actually plastic and bad for the environment….

The last time we saw our daughter alive was on her 23rd birthday. I took her for lunch and bought her some plants. I noticed this week that the rose she chose was flowering a perfect orange and yellow flower. Noah and I made a red velvet cake (Betty Crocker of course) and we sang Happy Birthday. Noah delighted in helping to blow out the candles with his Mummy. We left Ellen at home happy and contented with her lovely little family – Her, Mikey and Noah. All was well……

All was well? It seemed that way. Ellen was much much better having survived the traumas that the previous few years had inflicted on her. She was succeeding at university with one more year to go. She had created balance in her life and had a bright future. Depression is a demon though. It lives inside you. It is not all tears and staying in bed. It lies behind that beaming smile and can eat at you from the inside. ‘You are strong’ ‘You are doing so well’ …….. Everything can seem so normal and ordinary and safe on the surface but underneath you can be fighting a war inside your mind. Overthinking, worrying, stressing, panicking…. constantly feeling fear but smiling through it. You go out of the house and try to act ‘normal’ but inside you are in turmoil. Traumatised by the past and frightened of the future.

When someone takes their own life they must think that it is the only answer to that insurmountable pain and fear in that moment. It is a desperate act to finally end the pain. In that moment they can not see that in the morning sun things will seem better, brighter, less huge and less terrifying. They can not see the pain that their leaving will cause to the people that love them and even those who don’t know them – how can they? The consequential ripples reach far and wide. I challenge anyone to say that suicide is selfish.

In the first year after Ellen died we produced our Mermen for Mind calendar to raise money for the wonderful ‘Mind’ the charity for better mental health. They campaign for better services as well as providing local care and support all over the country. Imagine being in A & E for three hours. Do you think that is bad? Now imagine having a mental health problem…… When you have finally summoned up the courage to ask for help you are then told it will be weeks before an assessment then you will go on a waiting list. The waiting list could be twelve weeks long….

The calendar kept our team of some of Ellen’s closest friends busy and gave us all something to focus on. We have had many days and nights where we have enjoyed each others company and laughed so much we cried. We have also been able to remember our gorgeous girl. It has been a lot of fun. I love to see the friendships between her friends grow and blossom. They have supported each other and us over the last two years amazingly. I know Ellen would be so proud.

Without all the planning and preparation for the calendar 2019 had been very different. It has really hit hard. Each day marches on without Ellen relentlessly. Some days are worse than others . I wanted time to stop. I never imagined I would be writing this two years on…. that wasn’t possible then but here we are. Time will not stop for anyone. The anniversary of Ellen’s birth is two days apart from the anniversary of her death. This is agony – how can we celebrate her birthday when we are so so sad? Facing a problem though is about looking at the alternatives for solving it. There are always options and opportunities in each problem to deal with it.

What we need to do is keep on celebrating Ellen’s life and her birthday. We will do this among her friends and family and all the lives that she touched. We will also do this by carrying on our campaign to raise money for this wonderful charity ‘Mind’ and continue the conversation about mental health that she started.

So please raise a glass to her today, smile and be happy that she was….. Our gorgeous girl…….

Guest Post: Alone We Are Strong

I spend my life caring for other people, I forgot to care for myself. I had been feeling strange for a while. Worrying about everything, having this awful dull ache in my chest every morning, waking up through the night, constantly feeling tired. At the time I just thought everyone must feel like I felt, I didn’t really acknowledge it as being an issue. It took a huge breakdown at work and my doctor sitting me down and spelling it out to my face that I suddenly realised I was seriously not ok.

I am a children’s cancer nurse, have been for 4 years. Almost everyone has the same response when the find out what my job is; ‘that must be so sad’, ‘you must be a strong person to do that’, ‘how do you do it’. Rightly so it is sad at times. But it’s such a happy environment to work in. I work with a team of heroes and look after heroes as well. It’s a privilege and I wouldn’t wish to do any other job.

There was a sad case that I was involved in at work that knocked me quite hard. I had a lot of guilt and sadness trapped inside me for a long time after that I didn’t speak about. I put on a brave face and just got on with it, forgetting that I am still a human. I work in an environment that can at times be heartbreaking and I forgot that it is ok to cry and to be mad at the world when not everything goes the way we want it to.

I cannot say for sure if this was the reason my mental health deteriorated, but I think it was definitely one of the triggers. About 3 months after, I was diagnosed with anxiety and depression.

It took a while for me to come to terms with it all, I was unsure of how people would perceive me. I was unsure whether people would think I was too weak to do my job and I was worried that I would be branded pathetic. None of this was true. I am lucky enough to have an extremely supportive manager and network of friends at work that helped me understand what was going on and to accept it for what it was. And so I was able to start to piece myself back together. 1 in 10 nurse sick days are down to stress related illnesses. The thing with being a nurse is that you can’t do your job when only half of your body is working. Nursing is demanding, mentally physically and emotionally. We all know that the NHS is in a crisis. We are underpaid and overworked. We do long hours and we have to be alert for all 12 of them. I can’t look after anybody if I am struggling to look after myself and so I have had to have time off work which is hard. But self care is something I am teaching myself.

I vowed from the start that my experience would be something that I am always open about. Being open and talking has assisted with getting me out of hard days. I want to help people understand that mental health problems are absolutely nothing to be ashamed of. Especially in my line of work. I want to encourage people to talk. If I’d have got things off my chest sooner, I may not be in the position I am today. A problem shared is a problem halved and if I can promote just one person to say ‘hold on a minute, I think I might need a bit of help’ then my experience has been worth it. I can’t help having anxiety and depression in the same way that someone can’t help having diabetes. My mental health doesn’t define who I am, but it’s a part of me and I won’t hide it.

Alone we are strong. But Together we are stronger.

Children holding hands

Written by Danielle Knapper | 15.05.2019

Mental Health Awareness Week

Ellen’s video blog

This is Ellen (Grace Kelly) who wanted to dedicate the rest of her life to helping people with mental health problems. She wanted to start a company making soap with healing properties, essential oils and healing stones. Ellen could see the gaps in the services available due to her own experiences and thought it was unfair that so many people were suffering with poor mental health and insufficient help. She kept on trying to get people to openly discuss things and start a conversation about it all. She would be amazed at how things have progressed conversation wise since she made this video blog post in June 2017.

Ellen had come so far herself and helped so many other people just by being determined and most of all by being her but she succumbed to her own mental illness only days after she made this video. If only she had re-read her own very beautiful words that night…..

“I am almost brought to tears of how thankful I am for my progress, for the person I have become and the way my life has changed. I am thankful for my mistakes, my faults. I have fucked up enormously and at twenty-two, I’m free.
I would use meditation to escape my problems for ten minutes, to settle my mind, to understand that whatever is going on isn’t equivalent to the apocalypse. Then without noticing, I gradually interpreted it into everyday life. Having a shower I would breathe in the lathering soap caressing my skin, I’d be slow. Or realising how much I love to cook, using different oils, vegetables, seasonings. To smell, eat slowly, enjoy the sensations that I’m experiencing. I’m in love with simple things again”. Ellen Scott 2017

Please share this video and the rest of Ellen’s blog. www.ellenscott.co.uk Let’s keep this conversation going and keep on making the difference that she was trying to make. Lets campaign for better services for people like Ellen or me or you… We all have a brain and we all have ‘mental health’.

Christmas

I have always loved Christmas. Everything about it, the sparkle, the kindness people show, the carols, the movies , the food, the drinks, the pure magic of it all. Each Christmas we look forward to visiting the local garden centre to marvel at the beautiful displays or to visit Santa himself. We had precious times on the Santa Special with Ellen and then also with her cub. The Santa Special trains run on the  steam railway in our cute little village and has been a family tradition for many years. Another tradition was also that Ellen was a pixie on this train – one of Santa’s little helpers. In 2014 she was actually chief Pixie – the pinnacle of her Pixie-ing career!

On Sunday, I was nominated to work as Chief Pixie on the Worth Railway Santa Special Train! This fabulous privilege required me to talk back to the other pixies and, whilst following Santa down the train, working out, through a ridiculously complicated colour scheme, which present is needed for the next child. I love Christmas! It was the loveliest five train rides I’ve ever been on!” – Ellen Scott

This Christmas everything feels different, so silent, so sad, so empty. Ellen and I would get giddy about Christmas together each year. We would get a telling off for getting excited about the cards appearing in the shops in September and playing Christmas music in the kitchen. If I visited the garden centre without her she would have something to say about it. Even when she had her own baby Santa still came down the chimney in our house for her. He always left a trail of glittery footsteps all the way to the foot of our huge tree and up the stairs where the Christmas stockings were hung. He also always enjoyed the sherry and biscuits we used to leave him. Sometimes he enjoyed a little too much sherry and struggled to put the presents in the right place!

The smell of the (always real) tree would fill the living room and you could always feel the warm cozy glow of Christmas everywhere in our house.

This Christmas I decorated a tree but it isn’t in our house, it’s at the cemetery. I made a little pink star out of some pink wire we had. Every little thing in our house holds a memory. That pink wire has been used in so many different creative ways… wrapping around wine bottles with sparkly beads rather than gift wrapping, making jewellery, embellishing cards. All with smiles and mostly happiness (sometimes sadness too) and often wine. Many many evenings sitting round our big kitchen table making things and making memories at the same time. Ellen would come to me with her ideas and often together we would make them happen. It’s good to be creative, it’s therapeutic sometimes. I know Ellen relied heavily on her creativity to dispel the trauma that the last few years posed to her. She discovered how to make flowers funnily enough out of wire then glue and nail varnish. I know she made her friend a princess crown. My girl was a creative genius.

When Ellen was a little girl she used to always have to have scissors sellotape and paper around her. We jokingly used to call her the scissors and sellotape pilferer. Often when the last pair of scissors had disappeared from the kitchen drawer we would have to investigate her bedroom. Sure enough there would be several pairs unknowingly stashed away by Ellen, just dropped in the exciting moment her creations were finished. At a very young age she sat there with her scissors and paper and made a cube. ‘There you go mummy it’s a washing machine‘. The round door at the front wasn’t just drawn on in it; it opened. I still have it to this day. Things would be made for the fairy folk, hats for the cats, clothes and games for the dogs, never a dull moment. I have a Santa sleigh complete with reindeer and of course the man himself. I have always treasured this and always will.

Everywhere I go at the moment I cant escape Christmas. It’s in every home I visit, in every shop and street corner. I’m not trying to avoid it or spoil anyone’s fun but it just makes me feel so overwhelmingly sad. My Christmas buddy is silent. Always silent. Not gone away travelling and coming home in a few months but truly silent and this is never going to change. That’s a really difficult thing to write because writing it down almost means acceptance. In my mind though I can not accept it, it feels wrong to do so.

This year we made a calendar. It has been a focus for the group of us who created it and it has helped; it has been a distraction (who would fail to be distracted by sparkly mermen and Christmas in our lounge in mid June – oh we went for it with Christmas music on youtube and all the decorations) and also has helped to know that we are helping others like Ellen by supporting the brilliant charity Mind – for better mental health. We have had conversations with many many people as we have marketed the calendar and it really has been eye opening listening to the struggles that so many people have had with their or their loved one’s mental health. They have been the ones who really seemed to have understood how we must all be feeling. Otherwise you can only imagine. I used to hear news stories and wonder how people who lost their children can possibly even try to live some semblance of a normal life after what happened to them and their child. How could they even get dressed in the morning never mind how can they ever smile again or go about their normal lives. It is what seems like an impossible struggle to suffer the loss of someone so close and Christmas seems to magnify the pain.

There was a day recently where I came across a lady by chance on facebook. She had lost her lovely daughter three years ago and she seemed so strong, refusing to let people forget about her daughter and always keeping her memory alive. I don’t know what made me message a perfect stranger about such a sensitive subject but I did. She saved me that day with her reply. She went through the stages of how she felt when it happened and how she got through. I was at a very low point that day and what she so kindly said did not make me happy again but what she said gave me hope….. hope that I could get back just a little bit of that strength and fighting spirit that people seem to think I am so full of. I’m not, I’m devastated. It’s Christmas and she is not here. What I will do though is keep fighting for the people that Ellen wanted to help and for the people I love…. I will never be ready to stop fighting.

Christmas Day will mark exactly 18 months to the day since we lost our girl. We will visit the cemetery and hear the silence loud and clear but then we will celebrate with our loved ones who are still physically here. We carry on for them and also for you my darling. We love you very much and know you are all around us but despite the deafening silence we know you will always love us very much too. We will have a happy Christmas because I can hear in my head what you would say to us if we didn’t (And somehow you would have managed to put a swear word or two in there somewhere as you so brilliantly did)! . So……..

Merry Christmas everyone! Thank you for supporting Mind by buying the calendars and cards! We know that Ellen would have made sure everyone was getting one for Christmas…. There are a few left so get your orders in. There’s still time!

Anna Scott