John died on his 30th Birthday, 31st May 2009.
We met in 2001 and moved in together in 2002. We met in Edinburgh while I was at University and moved to Carlisle then Belfast (where John’s family lived).
We had recently got married (in August 2007) and we moved from Belfast to the Orkney Islands in 2008. We actually spent 6 months of our 20months married living apart. I moved to Orkney to start my new job and John stayed in Belfast to finish renovating our house before putting it on the market. I regret that now but we thought we had all the time in the world.
We were living in a Caravan at the time John died. We had bought 6 acres of land and had put in a planning application to build our own “eco-friendly” home. We were planning our future and a family. I was 26 when I got married and 27 when John died.
We had been at another friends’ 30th the day before John’s birthday. We had spent the afternoon and evening with them, celebrating with a BBQ and a really lovely night out with them all. When we came home John decided to stay up a little while longer. I went to bed and finished sorting out all the cards and presents he had received for the morning.
I woke before six in the morning and noticed John had not come to bed. This was unusual but I thought he had probably fallen asleep on the sofa. I collected up his presents and cards and went into the sitting room of the caravan. John was there but he had obviously collapsed and when I tried to wake him there was no response. I have since heard others that have lost people suddenly talk about this, but I knew he had died as soon as I saw him. He just wasn’t there anymore. I remember picking John up to move him to a better position and starting CPR. I quickly realised that this wasn’t working but I felt I couldn’t stop. My memory of events after this is a little hazy. I remember specific details incredibly clearly but I am unsure about the order of events.
I called an ambulance and my Dad. The ambulance took quite a long time to arrive because we were far from the nearest hospital. I’m not sure how long it took but it felt an unbearably long time. My Dad and I continued CPR although I believe we both realised this was hopeless, it was too late. The ambulance came and I remember repeatedly hearing that long beep and the words “shock not recommended.” I knew that meant there was nothing more to be done. I remember walking out and sitting down outside the caravan. I remember a GP informing me my husband was dead. The police had arrived at this point. As the only people present my Dad and I had to complete interviews, separately, with the police before we were allowed to see John again.
I remember calmly answering police questions. I remember my step-mum being very unhappy that we had to go through this and I remember calmly explaining why it was ok, why I didn’t mind. I now realise I was in shock – at the time I just felt numb and wanted to do all I could to make sure the police were out of the house before my little sister woke up. At the time that seemed to be the most important thing.
When the interviews were completed I was allowed into the Caravan briefly to “say goodbye” to John. Although I had been asking to see him throughout the interview I felt suddenly terrified. Part of me did not want to see John in that way again. As I came into the Caravan a Policeman handed me John’s watch and wedding ring. I remember I wanted to put them back on him but I was told this wasn’t allowed. I remember kneeling beside him and I kissed him. I felt like I was watching myself from above. I could not really believe this was happening.
The caravan was treated as a crime scene until we had a cause of death. I moved into my Dad’s and don’t have clear memories of this time. I phoned my Mum and told her what had happened and left the rest of the calls to my Dad. I just shut down.
John’s family (mum, dad, brother and sister) arrived from Ireland. We had a lot of days all being together, just waiting for the cause of death to come from the Coroner. We were unable to make clear funeral arrangements until this was complete. We visited a lot of places John had loved on Orkney. It was an incredibly difficult time – visiting all the places that John would have loved showing his family, but without him there and with a great sadness surrounding us all.
John’s family were devastated. I cannot think of any words to describe how we were all feeling at that time.
John’s body had to travel to mainland Scotland for the Post Mortem. It took 10 or 11 days until we had a cause of death. Originally this was ARVC but was later changed to Sudden Adult Death because it was unclear what specific condition had caused his death.
I remember I did not cry for such a long time. I felt numb and disbelieving. I remember seeing everyone I know and love crying but feeling unable to cry myself. That came after the funeral and for a long time afterwards.
In collaboration with John’s parents I arranged for his heart tissue to go to Dr Mary Sheppard for further testing. We also arranged for his heart tissue to go for specific genetic testing in Amsterdam. Although I was next of kin I transferred this to John’s parents in relation to his heart tissue. They are both GPs and knew the best ways to ensure that John’s heart tissue got to the right people to be as helpful as possible in researching SADS.
John and I were not religious. We had a Humanist wedding ceremony and John had strong beliefs in Humanist values. Myself, my family and John’s family worked together to plan a Ceremony that John would have wanted. As a lot of people I have met through CRY have said to me – it was hard at times to make decisions. It was difficult to know what John would have wanted. We hadn’t talked about it.
A lot of John’s friends came from Belfast and stayed in tents around our Caravan (I had moved back in by this time). I remember on the morning of the funeral we were all sitting outside. It was a beautiful day, bright and sunny with clear sea views. Some of John’s friends were on the trampoline with my little Sisters. We were just enjoying being together and in the end the funeral cars arrived before any of us had started to get ready. I think all of us wanted to shut out the real reason for the day. I kept looking at John’s friends all there, thinking about how excited he was about showing them Orkney. I think we all wanted to enjoy it a little bit, as John would have wanted us to. It all seemed a bit bizarre, but right (and we were at the funeral on time).
John was buried in the suit we had married in less than two years before. In planning readings and music, with my family and John’s, I was struck by how similar and yet how irreparably different things were to planning the wedding. I wrote John a letter to put in the pocket of his suit in the coffin. I believe that this was when the reality started to sink in. I can’t even remember what I wrote but I know it was the longest letter I have ever written. I felt like I had to get everything in that letter. I felt like it was my final chance to say anything to John, to say all the things I wish I’d said. Every time I started to sign off I felt like I needed to continue it just a little bit more, because my goodbye in that letter was the final goodbye.
For the funeral we were allowed to use a building that was a church but is now a town hall. The close friend that had put together my wedding flowers put together John’s funeral flowers. Orkney is full of wild poppies in May. John loved them and had been planning to photograph them the day before he died. He had completed a course in Plantsmanship at Edinburgh Botanical Gardens and knew every type of wild flower. His funeral flowers were a beautiful collection of wild flowers, from hedgerows and friends’ gardens, the types of flowers that John loved most.
John also liked visiting Orkney’s art gallery. It cost £6million to build and John used to spend a lot of time there – looking at the architecture more than the Art. He was convinced we could recreate it in our own home-building plans for a fraction of the cost! The Pier arts centre kindly gave us the use of their upstairs gallery for a Whisky toast to John after the Funeral. Myself and John’s family had put together a slide show of photos of John throughout his life and this played in the main gallery space.
John had got to know a lot of people on Orkney in our brief time there. He constantly amazed me and it amazed me again that so many people came to talk to me at the Wake, to tell me what an incredibly special person John was.
The funeral was a bizarre experience and felt unreal throughout. I remember walking in and seeing friends from so many different places, people that had managed to travel from all over England (even the Isle of Wight!) and Ireland at such short notice. John and I had been so excited about plans for these people to visit us on Orkney. Seeing these people, their sadness and fear as they looked at me, was the starting point for the reality of what had happened to really reach me.
After the funeral in Orkney we also had a Memorial Service for John in Belfast. Again, although this was of course an incredibly difficult day I was struck by how many people had such wonderful stories to tell about John. It is a testament to John as a person that there was lots of laughter, jokes in story-telling and happy memories at his memorial service. It is truly what he would have wanted. I am not saying that it was easy for anyone, there were tears as well as laughter, but the easy-going essence of John shone through on these days.
One of the hardest parts of losing John was seeing my younger sisters grieving. They were aged 13 and 11 when John died, and he had been a part of their lives from their earliest memories. Sudden death is hard to explain to an adult but even harder to explain to young people. John still comes up often in our conversations, and I am now able to do this with a smile.
One of the main things that has helped me, and my sisters tell me has helped them in managing their grief is the fundraising we did for John’s memorial fund with CRY. As a part of this we went swimming in the sea every month of 2011, which in the Orkney Islands in Northern Scotland takes some determination! It was a lovely way to remember John every month, and to make remembering happy. A lot of people joined us for our final (Christmas eve) dip and (yet again) it was amazing to see so much fun and laughter (as well as fundraising) come out of this tragic event.
A lot of people did not know what to say to me in the weeks after the funeral. Some people actually avoided me if they saw me coming! I have heard this is common with people that have been bereaved. I also look back to my own experience and know that I did not contact a friend who had lost her daughter because I did not know what to say. That was before I lost John, now I would say to anyone please just don’t avoid the person who is grieving, there is no wrong or right but any words are better than nothing. I had some friends that were there throughout and some that disappeared for a while but have come back. I was lucky to have a huge amount of support around me and I am forever grateful to the people that have stuck with me through the rough times.
Someone who did speak to me about grief at this time told me something that has stuck with me through the years since John died. The words clearly came from someone that understood bereavement and are true to my experience. At first you cry every hour, then every day, after some time there are occasional days without tears, sometime later you only cry once a week, maybe even once a month – but when you cry you cry with the same loss as the first time you cried. Despite this you have more and more days without tears, more days when you live your life.
It is now just over 4 years since John died, in some ways it feels longer and in some ways so much more recent. I do still miss him every day, but the level of missing is getting easier to manage`. Learning how to live again is a difficult process but I do feel I am now living my life again. It is the old cliché and I have heard so many people say “he would want you to be happy” but it is also true. I am beginning to be able to remember John and the happy times, without the searing pain – just with a quieter sense of missing him still.
I don’t believe in an after-life. I wish I could as it would provide such comfort. But I do believe we live on in the ways we have touched the lives of others. John had a positive effect on so many people’s lives and was loved by so many. He was genuine and kind and brought happiness and laughter to so many. It is through this that he lives on, in the good memories of others.
There are a million things in my life that I would never have done without the strength and courage that John’s love gave me. That was true when we were together and is still true, my experience of loving John and being loved by him has helped me to have the strength to be able to face losing him.
There are two poems that I would like to include in this story, they have helped me in coping with the loss of John.
I am there where the river flows
And salmon leap to a silver moon
Where insects hum and the tall grass grows
And sunlight warms the afternoon
I am there in the busy street
I take your hand in the city square
In the market place where the people meet
In your quiet room, I am there
I am the love that you cannot see
And all I ask is,
Look for me.
You can shed tears that he is gone
Or you can smile because he lived,
You can close your eyes and pray that he will come back
Or you can open your eyes and see all that he has left.
Your heart can be empty because you can’t see him
Or you can be full of the love that you shared,
You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday.
You can remember him and only that he is gone
Or you can cherish his memory and let it live on,
You can cry and close your mind, be empty and turn your back,
Or you can do what he would want: Smile, open your eyes,
Love and go on.