The personal loss from a young sudden cardiac death is engraved on the heart of every parent, sibling, partner or friend forever. To be confronted with a vicious pandemic that engulfs every nation is terrifying, and most of all affects those that have already suffered the sudden loss of a fit and healthy young person. The loneliness imposed by the pandemic can leave them psychologically and physically ostracised. No hugs or cuddles permitted; not even a final goodbye at the death bed or a proper funeral allowed. It endangers lives. The courage needed to endure such emotional deprivation is extraordinary. Treasuring those you have; talking to people who understand; relishing each and every day; defying the terror that is insidiously lurking. CRY is here to help reduce your suffering in any way that we can.
Alison Cox MBE
CRY has Facebook groups where people (aged 18 and over) can connect and share experiences with other people who have been affected by a young sudden cardiac death.
Below is a selection of personal stories from CRY supporters. If you would like to share your own experience please email them to cry@c-r-y.org.uk – subject: Lockdown Experience.
Or you can submit your experience using the form on this page.
My daughter Nina died in 2005. She had a Long QT. I found her dead at home in the morning. The slide show in my head of the resulting attempts at resuscitation linger all these years later. Over the years I have carried on working, gone through retirement, seperated from my husband and got on with life. I also spent time giving talks on the subject to Medical students and to cardiac conferences.
I have been in solo lockdown since a week before the official lockdown started as my ex husband is shielding and just in case I was required to help I felt this was sensible. Generally I have managed quite well but a week ago would have been Nina’s 38 birthday which was especially difficult this year due to the isolation and lack of distracting things to do. I try not to say too much to Nina’s 3 grown up siblings….partly to protect them but also to protect myself. The silence of solo or indeed even shared lockdown has made things even more difficult to navigate . I think I am a very resilient person but I have to say that after 13 weeks alone with thoughts and memories it is pretty awful. I do try and think about the people who are worse off than me and that pulls me together. We have survived the worst thing a parent could go through so we will manage to cope with this grim situation and carry on.
By Paddy Jelen
As a bereaved parent of a child, even a grown up one, I have experienced lockdown and isolation from the instant he took his last breath. I am sure all of you who have suffered the tragedy of sudden loss of a healthy son or daughter will agree. Even 8 years on from Phil’s death I can be knocked from my safe zone instantly. But the experience of COVID 19 pandemic pouring into my protective shell from all angles has opened up wounds and pain that simmer under my surface.
The sight of ventilators, worried doctors, and heart broken families overwhelms me at times. The constant update on deaths and loss is phenomenal. The despair of the NHS workers and the emotional cries of the bereaved are an intrusion into my safe space.
I find myself screaming at the television “did you not know how precious life is!” or even in my not so nice being “well now you know what it is like!” it hurts, it is agony, its lonely and its forever.
But what this Pandemic lockdown has given me is time! Over and above the anguish, I have treasured those hour outings, the peace of the quiet solitude and the joy of being. The being that Phil no longer has!
By Sue Fisher
Hi! My name is Erin and you may remember that I wrote a page for CRY a few months back, on the loss of my mum, Katrina, and the different ways in which I cope with grieving. I have realised that, through quarantine and the situation of the world right now, a lot of the feelings of grief are very similar to the ones I and many others are feeling right now. The lack of control, the worrying and the overall feeling that things are a little bit ‘off’ at the moment are all emotions which remind me of when I was really struggling with coming to terms with the loss of my mum. That is why I am writing this page, to help any young person who has lost someone, or is just feeling very lost themselves, to understand their emotions or even to help improve their mood. I am in no way an expert on this (yet- mental health degree pending), but instead think of me as a friend, offering some advice on how to take care of yourself mentally during this time.
The first feeling I became aware of at the beginning of lock down was panic, which I am sure everyone has felt in some way or another during this situation. This panicked state felt very similar to grief, in the sense that I had no control over what was going on- I couldn’t stop the disease, I couldn’t go out anymore and so on. But when I sat back and thought about it, I did have control- and still do. This virus has changed the way I can control most things, but it has also opened up new doors of other things I can control. I can create a daily routine, one in which I can wake up earlier, exercise more, spend more time in my garden, reading, watching, writing, gaming etc. You have the control to do whatever you want with your day- you have the control to really improve yourself- despite what is going on outside. Creating a plan for your day could mean waking up, getting changed and just sitting with family. Well done you! This new regular routine (no matter how many activities you have managed to get done) is already doing internal wonders for your self-confidence (getting out of your pyjamas) and your purpose (going and doing something with family). Try to set aside some time in your day to connect with people (this could be your family, friends through social media or even playing with your dog), relax (try some meditation, breathing techniques or have a look online for some mindfulness tips), exercise (go for a walk with a family member, stick on a YouTube work out video or do some dancing in your living room- just because you can!) and reflect (plan for tomorrow- what did you really enjoy doing today? Write down a few things that you are thankful for).
It is very much easier said than done, and not every day is going to be that easy. Like grief, there are days where I do not want to leave my bed, and there have been days where I have just stayed in my room all day focusing on how negative the world is right now. You are completely validated for feeling this way, considering the mass changes going on. As long as you pick yourself up and do even just one little thing with yourself such as have a shower, read a book, do a jigsaw, draw a picture, sit outside for a while etc, I assure you, that you will feel better. Because you have accomplished something, you have beaten the negative thoughts and actually done something productive.
Please remember to keep talking- it is so important. Talk to your family, tell them how you’re feeling. I assure you that someone will understand you, everyone in the entire world is feeling a little bit lost right now. Keep talking to them about your loved one that you lost, share some memories that you have of them- try to think what they would make of the world’s situation. My mum was a teacher for example, and I think she would have been teaching her students from home like a lot of other teachers in the world are right now. Coronavirus does not mean you have to stop grieving. It does not mean that everything you feel towards your loved one’s death has to be put on hold- and it is completely normal for the feelings on both situations to feel similar or bring back a lot of memories. When all of this is over (and it will be- each day is one day closer to everything going back to normal again), you can continue to grieve and can therefore, continue to cope with your grief however you did before. Surrounding yourself with your favourite people, continuing your favourite hobbies, whatever it is that you do to make yourself feel better.
As a final note, please take care of yourself. Self care, and not just right now but even when this is all over, is so important. There are a lot of things you can do to make yourself feel better, have a google at some self care tips, little things like having a bath or colouring can make you feel so much better and so much more normal right now. Every night before you fall asleep, think of three things that you feel happy about- so that you fall asleep on a good note- even if the day you just had was awful. Plan days out for when we can go outside again, who you’re going to spend time with, everything. This time can be used to really plan things that you will be so grateful to do once this is over.
By Erin Christopher
I still expect Curtis to come bounding through the door and tell me that he has been away on a big adventure . But I know it will never happen and that he has gone from us forever. He had WolfeWhite syndrome and three days before Christmas 1999 his heart stopped beating and he died aged 16.
Patricia
My name is Gail I lost James my partner of 22 years and father to my four sons in July. My 17 year old son and I are reliving that horrific morning we discovered James in our bed. He had been fit and healthy 38 year old who had been in the gym and enjoyed a lovely family day together on the Saturday, went to bed and that’s the last we saw of him. That morning is etched on mine and my sons brain like a constant nightmare we relive each day.
The hardest thing has been to access support for my son at school as he is doing his A-Levels his counsellor I found through Camhs has been brilliant and saved him from harming himself. The boys are now waiting for their own tests to determine if they have the same genetic heart condition.
I myself have been unable to grieve as I have to care and support so many others that is my way of coping just worry one day I will just crumble and leave the boys with yet another worry!
Gail
My husband of 47 years died suddenly in May during lockdown I was not allowed to see him in hospital and he died without me being near him. I was only allowed in to the hospital after he had died when I got a phone call 3 hours after he was admitted. I cry every evening now as I miss him so much and the house is so empty. The doctor in charge was arrogant and unpleasant as he brushed aside the death certificate which I knew was not correct as my family are medical.
My daughter and son and family are being so kind to me but have their own lives to get back to and I do not want them to see me struggle. Everyone says I am being so strong and brave but behind closed doors I am so sad…and empty, I go out to lots of socially distanced coffee mornings and play golf but find it so hard because I am there only because my husband has died and my friends are being so kind. I am so tired of crying and dread all the coming months with Xmas etc.
We had a wonderful lovely life together and I accept his passing but feel so empty and sad and angry at the way we were forbidden to be with him.
Preventing young sudden cardiac deaths through awareness, screening and research, and supporting affected families.
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