Does a Death Re-Define You?

Wednesday Wisdom

Patsy and I were talking to the CLIC Sargent nurse that helped us to look after Evie while she was ill at home not long ago, and not surprisingly the topic of coping after the death came up. She related a story of another couple who had lost their son to cancer as well. Apparently, this couple had agreed very early on that they weren’t going to let his death ‘define’ them for the rest of their lives, or let it rule their lives.   They set time aside each week or month to do something for themselves.  At the time, I didn’t give the comments much thought, but now, looking back, I have had time to process it.

On reflection, I disagree with the sentiment, or at least would say that it wouldn’t work for me.  To me, at a practical level, if you have had to make a conscious decision to take an action because of the death, then by definition it has ‘defined’ your actions.  At a deeper level, Evie’s death was such a profound event that it MUST have defined me going forward whether I like it or not.  It has definitely changed my opinions, priorities and influences and how I deal with everyday events as well as the more important things. 

Perhaps I’m being a bit of a pedant in how I interpret the statement about it defining them as a couple, but the more I think about it, the more I feel that actually, acknowledging Evie’s death so openly is an act of love. It shows the world how much she meant to me, and continues to mean to me.  By not letting it ‘define’ me, it would feel like I was doing her a disservice somehow. It would imply that I had not been affected by it all.  The truth couldn’t be more different.

So, what does that mean?  It means that we are all so different that there is no right or wrong. Just whatever works for each of us. It also serves to highlight that we can’t always look to other bereaved parents for solutions. Just hints on what may or may not have worked. Our grief is 100% personal to us.

If It Hurts, Write it Down.

Wednesday Wisdom 2 Oct 19

Finding an outlet for the pain is absolutely vital for all of us that have lost a child.  Writing the WWs has proved to be incredibly helpful, but what surprised me was that writing the book that followed them was even more important for me.  The book has now gone to the publishers and I haven’t written anything substantial for several weeks, and I am now all too aware that I am missing it. I can feel the tension within me building again, the frustrations with minor problems and the pain of loss.  They all come together to make me feel ‘under attack’. 

Writing WWs has to be measured because of where they are posted, I always keep in mind who might be reading them and that they are available to all, not just the bereaved parents of the Compassionate Friends.  Writing the book was different, it was totally unfiltered.  I was able to use phrases and language that wouldn’t be appropriate on FB. And that is why the book was so liberating in emotional terms; I could unload everything, with nothing held back.  Now that I have finished the book, that route has closed so I had to find something else.  A thought from a friend, followed by a discussion with my counsellor has resulted in the blog.  It is now up and running (you may well actually be reading this on the blog!) and will also allow me to talk about other related topics that don’t sit within the conventional WW posts.

But I think I will still need to write another book as a pure form of release. I’ve said previously that grief can corrode you from the inside and I still believe that, so I need to get that ability to unload fully back.  I will have to start a second book soon, although I have no idea what form it might take. When I was writing Eggshells, I felt not only an emotional benefit but a physical one.  I can’t explain why, but having the ability to unload to an anonymous audience, yet knowing that it would be read by my friends made a huge difference to me.  Talking to my closest friends is hugely important but I still hold back, I’m not completely open with how I feel.  I always, and I suspect that we all do this, keep in mind that they have their own lives to lead and over time will find hearing the same comments from me to be “more of the same” – I’m even doing it now writing this, trying to find a form of words that expresses what I feel and think, but won’t offend.  By considering the needs of others, I don’t gain the fullest benefit from the act of writing.  I may even do something similar on the blog, but will have to see how that develops.  A second book will be better for me, although I have no idea what to write about yet. A cook book has been suggested but that won’t give me the outlet that I so desperately need.  I may well do both.

The important bit for me is that an outlet exists and that I have a route to unload the pain, frustrations and questions before they can do more damage.  I think that we all need something, some way to express what we feel in an open format that is honest.  Finding something relaxing is one thing, and that is a lovely distraction for a while, but getting rid of the corrosive part of the pain is much more important.

Who wants to be Stoic?

Asking for help is something that the British find difficulty with. Asking for help with financial issues is almost impossible. If we have cancer we don’t think twice about calling Macmillan. If we have a child with ADHD, we readily pick up the phone and talk to local specialists about what help is available. Yet if we are in financial difficulty, we struggle on and do nothing either until we drown or it is too late and we have built up massive debt.

Losing a child places massive strain on our lives in so many different ways. One of those is our ability to function at work, or even work itself. If you are self-employed and lack the motivation to work because the centre of your universe has gone, then paying the mortgage can be a really difficult process. Yet we don’t seek financial help early enough. We’re not burying our heads in the sand as such, just find moving forward difficult.

There are about 3,300 benevolent charities out there that offer financial help to people who are struggling on low salaries or pensions. Pretty much every occupation is covered, so if you have financial problems, then there is almost certainly a charity out there that can help. You might be a teacher, builder, nurse or soldier. There’s a charity for you. Applying to charity for help still seems to be something that we are reluctant to do. Why? Why is it so stigmatising? If you make an application to a charity for help, no-one will ever know, they will keep it completely confidential.

If you have lost a child your world has been turned upside down so has enough pressure and stress without adding to it. My recommendation to you is to seek help early, and not worry about what others may think because they will never know. It isn’t an indication of failure, it is a recognition that you are struggling to cope - it’s not a hand-out, it’s a leg-up; a safety net. And when you get back on your feet, you can support the charity that helped you by running a fundraising event or two, so that they can carry on their work.

Do yourself a favour and get help early before it becomes too big a problem to deal with. I am the CEO of a charity and too many times people come to us with tens of thousands of pounds of debt and their only route is bankruptcy - try getting a mobile phone contract once you’ve been made bankrupt, even after it has been discharged 12 months later. There’s a website out there that is simple to use, and can help you to identify which charities can help you; take advantage of the help to get you through this tough time:

www.turn2us.org.uk

The Elephant in the Room

Tuesday 24th September should have been Evie’s 15th birthday, instead she is forever 13.  It was a tough day, but I think that it is now time to tackle the elephant in the room, both for bereaved parents like myself, and also for friends and family who may well be living in ‘the dark’ or quite possibly ‘in denial’.  This WW comes with a health warning, it’s going to tackle a taboo subject; a very delicate subject.  Please be clear, it isn’t a cry for help.  It is my, probably very clumsy, attempt to make a wider audience aware of how this world of ours really feels, and that you must look beyond the smiling face that you may see.  I have tried to keep the language in this WW moderate.

Evie’s death (not ‘passing’) ripped a hole in our lives that can never be filled. We created Evie out of nothing and when she died, we lost a part of ourselves, we lost our future and our reason to be here. That last part is the elephant; our reason to be here.  Without Evie, what’s the point?  Everything that we did was for Evie, our work, our plans, our lives - were all there to prepare her for adulthood.  That has gone.  So why bother carrying on?  It’s a subject that never gets discussed. It is hidden from view, but that doesn’t mean it isn’t there. For many, out of sight quite literally means out of mind.  It cannot stay that way.  Like so many mental health issues, it must be out in the open so that it can be tackled.

Shortly after Evie died, I mentioned to our doctor that I had been experiencing constant headaches for many weeks.  When you think about the stress that I had been under for the previous 3 months, that isn’t a great surprise, but as Evie had died from a brain tumour, he wasn’t taking any chances, so he sent me for a CT scan the next day and asked them to expedite the result.  He rang me that very evening and said that everything was clear and I was fine.  I was disappointed.  All I wanted was to be with Evie again.  Twenty months on, I still feel like that.  There are various bits and pieces of me that are breaking, some more seriously than others.  All part of getting older most likely.   If one turned out to be very serious, I think I’d actually feel relief.  The grief would be finite at last. 

The face that we bereaved parents present to the world is often governed by how others wish to view us.  We hear time and again that we are ‘strong’, ‘amazing’ or ‘inspiring’.  We’re none of those things, we just don’t have a choice.  At some time or other in our grief journey, I think it is safe to say that the vast majority of bereaved parents just want the pain to be over and want to be with their children again.  I’m no different.  I have spent a lot of time trying to rationalise it, but the grief stops you from doing that because it is too powerful.  I don’t know what Evie would want me to do because I can’t ask her.  “Evie would want you to carry on” is nothing more than a meaningless platitude.  I can presume that she might be p***ed off that when her life had been taken from her, that I had thrown mine away.  If I’m not here, I can’t honour her memory. 

As I have said before, I take anti-depressants to help me through the day.  That dosage doubled a few months ago and last week it doubled again. And for me, that ‘why bother’ question came back.  Evie died 20 months ago, and in that time, the temptation to join her has been strong on 4 occasions.  Each time I have literally as well as figuratively stepped back.  Yet, people tell me that I am strong or inspiring.  I think that you can see from those few lines above, I don’t feel strong.  The pills help to control the chemical reactions in my brain and help me to regain some capacity for rational thought.  When you add this to open and honest (honest with myself!) talks with my counsellor, then it gives you the tools to continue.  But the pain never ever goes away, and it is a constant exhausting battle to get through each day.  It grinds you down. 

For bereaved parents who may be reading this, you aren’t alone, you aren’t going mad, we all have those moments of despair.  Sometimes, those moments are there for a while, but they can be worked through with friendship, strength and determination.  There will continue to be times when it is all just too much to cope with, and for those times we need our closest friends.  And that is to be expected.  When those friends can’t cope themselves, then there is The Compassionate Friends.  The wonderful group that all share our pain and understand in a way that is impossible for everyone else. 

For the friends and family reading this, look beyond the smile, the façade, the bravado.  Underneath is a soul in turmoil that needs to be loved and cared about.  If you think I’m ‘strong’, I’m not.  I’m broken, utterly broken.   But now the elephant is out there for all to see, and it’s time to go big game hunting.