Lost

About 2 weeks ago we marked what should have been Evie’s 18th birthday. It wasn’t a birthday party or a celebration, more the chance to remember her. But it was also that enormous milestone that I had been dreading. It has taken me this long to reach a point where I can write something about it. The delay wasn’t caused by pain, but a lack of understanding of what I had felt; am still feeling.

We drew together the people that were there for us when Evie died, the ones that didn’t abandon us, the ones that didn’t change the subject when we talked about her. From an objective point of view, the day did what it was planned to do. We ate, we drank, we talked about her. The chef that we brought in cooked her favourite meals - scallops, salmon, fillet steak and Eton Mess. We drank 23 bottles of wine from her birth year, 2004 and every drop was her. The murder mystery was more bonkers that I had anticipated but I think that Evie would have had a major chuckle at what was going on.

In some strange way I had expected some sort of fulfilment (most definitely not the right word, but it escapes me at the moment) but instead I got something totally different. I got emptiness. And excruciating pain. Evie wasn’t there and her absence screamed loudly at me all day. It was almost like an out-of-body experience. It was like I was observing the day from somewhere else. The business of the day kept me occupied but not distracted. It was almost as if I had a voice shouting at me “what are you doing?”. It took me a while to work it out but by creating this event to mark her birthday, I was inviting her home. I was calling to her. I wanted her there and in some maddening way I was waiting for her to walk through the door. But she didn’t come. She didn’t join us and I just felt utterly lost all over again, just as I had done back in the spring of 2018. That rabbit in the headlights feeling where you can’t move, can’t think, can’t understand. I felt the body armour around me, protecting me from everyone else. Only now, two weeks later, can I appreciate and understand what I had been feeling. I have started to feel again, only now the loss is dark once again. The black dog is back, sat with me, begging me to follow him. The last time I really struggled with depression I had the anti-depressants to help me through it. Not this time. This time it is simple resilience that I need.

And then, last night, after far too much to drink at an awards dinner in London, I broke through the darkness and a chink of light shone. It started with booking into the hotel and finding that I was on the 13th floor. Then at the fun casino, I placed my $10 bet on ‘13’ at the roulette table and thumbed my nose at fate and depression, almost saying “come on then, do your worst”. The little silver ball dropped into 13 and the croupier placed $1,850 of chips on my little pile. It felt like Evie was saying “It’s okay Daddy, I’ve got you”. The body armour dropped away and I felt a little freer once again.

Milestones are always hard, but this was altogether different. The only way that I can explain it is to say that on top of the feelings of pain, there was disbelief, shock and an overwhelming sensation of being shut down. I didn’t ‘feel’ anything. I can only presume that it was some kind of mental health self-protection mechanism. Patsy and I each needed a rock to lean on, a friend to be there should we not be able to hold it together. For me it is always David, one of Evie’s godfathers. On 22nd September David rang to say that both he and his wife had gone down with a nasty bout of covid and couldn’t come. For me, the mental shut down was the only way I had of coping at all that day, I can see it now for what it was, but at the time I was bemused. Finally, two weeks later the darkness is lifting a little and I am starting to get a grip on what happened. It’s a reasonably safe bet to assume that something similar will happen on her 21st birthday, but at least next time I’ll have a better idea of what to expect.

So …. did the 18th birthday event work? Sort of. For me it was about making sure that the day didn’t just slip passed without anyone noticing. People forgetting your dead child is the cruellest of blows. I wanted people to say her name. For dinner we had 18 people sat around tables eating her favourite food and talking about her. Eighteen people for whom being part of a day to remember her was important and for recognising how important it was to us as well. And I guess that is what it was all about. The emotional cost on us was high; for me the highest that it has been in some time, but Evie is worth it. For her 21st though, I think a different approach will be needed as I have no desire to repeat that experience.

The Mother of all Milestones

In a little under 6 weeks’ time, another milestone will slam into us. It should be Evie’s 18th Birthday and the house should be full of laughter and us celebrating her transition from child to young woman. As Evie was one of the oldest in her year at school, it also means the beginning of a stream of 18th birthday parties for her friends and the inevitable tidal wave of social media posts. The whole thing serves to ram home the fact that she isn’t here and her future has gone.

We decided over a year ago to mark her 18th birthday by gathering together those people that stood by us when our lives were at their darkest, those that didn’t turn their back on us (so many did), change the subject every time Evie’s name was mentioned, and still talk to us about her. The bereaved parents among you will know what I am talking about. Poignantly, and quite by coincidence, it is 18 people that will be coming together, along with one Ukrainian who now lives with us. Our decision to offer a home to a refugee driven by the kindness of a 13 year old girl whose lead we follow. Fitting really.

On the day, we will be eating her favourite food - salmon, fillet steak and an Eton mess of sorts, and drinking wines from her birth year 2004, wines that I have been collecting since she was little in readiness for this very moment in time, but wines that she should have been sharing with us. But they are also wines that are as beautiful and elegant as she is. And we will be playing one of her favourite games too - a real-life version of Cluedo, a murder mystery with actors playing their part. Evie’s young agile brain could out think us at Cluedo and she won more often than not. We never let her win, she had to fight for it.

Let’s not hide from the fact that the day for us will be excruciatingly painful from the second we wake until we finally fall asleep. But it is also a day to sit quietly and talk about her among friends. It also marks the start of 4 months of other milestones that follow each year until we reach the anniversary of her death in January and the funeral in February.

I have never been one to shy away from confronting the pain of her death, and the 24th September 2022 could quite possibly be the biggest one in a long time. It is a huge beacon shining a light on what we have lost, of what could and should have been, of what will never be. A lot of tears will be shed that day, by us, by friends.

If you are looking for the uplifting optimistic ending here, then I regret to tell you there isn’t one. Sometimes, there is just darkness and pain. Pats and I are ready for it. We are ready to confront it.

A Bit of a Meander

Writing this blog has always been cathartic in a way. It has helped me to understand the whirling nonsense that often inhabits my world following Evie’s death, but sadly, I haven’t been able to dedicate as much time to writing as I would like. Unusually, I am starting this one without a theme in mind. I am just going to write and see where it leads, meandering along exploring things as they pop into my head.

I did a short 11 mile training walk today around Avebury; much shorter, and indeed slower, than originally planned as it was too hot to go blasting around the countryside for the heck of it. I figured out a long time ago that I have nothing to prove to anyone, least of all myself, so why push too hard and risk injury when I only have 5 or 6 weeks to go until the Ultra hike? Not long after Evie died I found myself pushing hard trying to understand what had happened and how I could fix it. The whole process was incredibly self-destructive and thankfully I stopped. When we drive ourselves on, there is usually something underlying it that is the root cause, and unless we can understand that cause then we can blindly push on and do real damage to ourselves and those around us. For me back in 2018 it was simple, I am task driven and my life experience was telling me that if I broke the problem of Evie’s death down into its component parts, fixed each in turn, put it all back together again, then hey presto, Evie would be back. Impossible of course, but understanding the issue at its root allowed me to find the right help - sertraline.

But what I also found back then was that very few people were prepared to be honest with me. Many could see what was happening, but only one or two had the courage to say something. Most took the easy path and either ignored it, or just uttered sympathetic noises. It’s all part of that fear of upsetting people. The truth is hard to hear sometimes, but ignoring it can be hugely damaging.

Today’s walk was spectacularly beautiful, in blazing sunshine and as always Evie and I chatted away here and there about all sorts of things. Three and a half hours of peace and quiet, seeing only a handful of other people, a few polite ‘good morning’s and not a lot else. I hadn’t planned the route, just started out, drifted along and just waited to see where I ended up. I don’t normally like unplanned routes, and particularly not circular ones. I much prefer a straight line with a destination, it gives me the drive to get it completed. But today somehow it worked. No idea why but it did.

So I got home and decided to write, so here I am and just like today’s hike, there’s no plan, just a meander along and I’ll see where I end up.

On the news on the way home, I heard that the Royal London had finally withdrawn life support to Archie Battersby. The press has been full of comments on both sides about how it should or shouldn’t be handled. The thing that struck me the most is that, and this is thoroughly untested, those making the decisions haven’t the faintest idea of how their decision will impact on a parent. Unless you have lived it, you are blindly ignorant of the world of pain that is descending on them. I’m not going to take sides here as that isn’t appropriate, but of those of you reading this, I can guarantee that only those who are bereaved parents will be able to stand in his parents’ shoes. And I wouldn’t mind betting that most bereaved parents will be quiet on the matter too, knowing that there is no positive outcome no matter what happens. The world that we inhabit is so different from everyone else’s.

As I have said and written many times, Evie’s death brought the world into sharp focus. It brought a type of clarity. It has allowed me to sit back and watch as the Conservative Party imploded and we saw politician after politician place their own interests ahead of everything else, scrambling for places in the rapidly crumbing cabinet, only to jump ship a few short hours later when they woke up to the fact that they would go down with the ship if they stayed aboard; no matter what your political leanings you have to ask ‘whatever happened to loyalty’? Now two candidates, supposedly from the same political mindset are ripping into each other in a public slanging match that looks like it belongs on the other side of the Atlantic. What would Evie make of it all? I think that she would be confused and appalled in equal measure. Politicians, local or national, too often use others to their own advantage and move on when it suits them. A sad indictment of life as we know it, lacking clarity or vision, taking decisions based on limited experience of life or real people and how their decisions will reach into society. You can’t learn life from a lecture or a book or a University degree, you have to live it. Our experiences define who we become, how strong we are and how we face challenges. Our experiences give us the framework upon which we hang the difference between right and wrong, the ability to understand others and most importantly, grasp the concept of the ‘greater good’. It’s why I will never enter politics as it is too easy to lose your way and forget that your sole purpose is to help others, not yourself.

Which kind of brings me back to today’s hike. On 10 September I will be hiking 60 miles in under 24 hours and that needs a lot of training. Today, I really could have done with stretching to 30 miles as part of the build-up, but I realised quite early, because experience had taught me, that it was too hot and the most likely end result would be injury and dehydration. So I cut it short at 11.2 miles and will pick up the distance another time. I listened to the inner voice that quietly said “you’ve got this covered”. Maybe I will head out early tomorrow before it gets too hot? Maybe I won’t. We all have the inner voice and we instinctively know when the path that we have chosen is wrong or maybe is hurting others. It’s the listening part that matters though. We all make mistakes, but how we deal with them afterwards is what is important. Our decisions as individuals or politicians have impacts and consequences, so we have to be prepared to pay the price of what we decide. For Rishi and Liz, their policies will affect each and every one of us. For us as individuals the blast radius is smaller, but no less important. Evie was always very aware of those around her. She had an uncommon empathy that so many lack. Not sympathy, empathy, they are very different. I sat at her grave today on my way home and asked her what was going on in the world and did she have any words of wisdom. I’m waiting for an answer or a sign.

Spotlights and Shadows

The world of the bereaved parent is one of stark contrasts. One moment, you are trying to grasp a fleeting image of your child, a wisp that sits in the shadows that you so want to hold close once again, and the next something happens that shines the brightest spotlight on your pain.

There’s a cliche out there amongst the muggles where people say something like “I didn’t want to say anything about Evie because I didn’t want to remind you of her death”. Like I could ever forget? To be reminded of something, you need to have forgotten it; Evie’s death lives with me 24 hours a day, every day. Sometimes it is front and centre, and a lot of the time, the dull ache of the pain is just there, an everyday part of my life, never fading, just ‘there’. Every now and again, an event happens, an insignificant little event, that turns the world’s most powerful spotlight on the pain. It knocks me sideways when it happens and the impact can last days. My classic reaction these days is to close down, retreat into myself and wait to heal.

As I get older, and the time since Evie’s death - not ‘loss’, to me the word loss implies it can return - increases, a lot more of my memories of her are becoming shadows of their former selves. The clarity is fading and I struggle to bring them into the light to remember them. It’s a function of age and time. Likewise, as I go about the task of living, I see glimpses of her.. Young girls that have similar hair, or maybe walk the way that she did. They are ghosts of my beautiful girl, shadowy images that are gone in an instant. The hardest part of these images is that they are totally unpredictable and there is no warning. And in that instant, once again a shadow turns into a spotlight, a hole opens in my heart and the pain sears through me one more time.

So this is my life now, one of extreme contrasts. It is a life of spotlights and shadows.

It's Been a While ......

As you probably know - mainly because I have wittered on about it often enough - writing has proven to be a bit of a sanctuary for me since Evie died. A way of expressing what is in my head, getting it down on paper and let it sit there in black and white for me to read through, mull over and understand.

The last few months have been strange to say the least. The need to write has been there, but I just felt that so much of what I wanted to say had been said before, so it all seemed a bit futile. Repetitive even. There have been a number of issues that I thought I had bottomed out and put away, safe in the knowledge that I had dealt with them. but then again ….

After Evie died, I became acutely aware that people are generally unable to cope with the tough stuff. Because talking to a bereaved parent is hard, they run and hide instead. The diehards stay. They sit next to you quietly, talk to you, ask about Evie, listen and are just ‘there’. Others simply don’t know what to do, frightened of saying the wrong thing, or know that they can’t handle anything tricky. I have a small handful of people that have been there for me whenever I have needed them. The period from Evie’s birthday through Christmas and then the anniversary of her death were, in a word, evil. I just wanted to give up. It was my 4th set of milestone dates, but the first without the prop of anti-depressants and as such it was ‘new’. When the falls came they were hard and deep. Instead of the usual bounce after a short while, I stayed down, weighed down by the grief. None of my coping strategies worked, even in combination. I felt like the beleaguered Spartans at Thermopylae, relentlessly battered by incoming waves of emotions. But here I am, another couple of months down the line, still standing. Throughout, I have had the support of a couple of friends. Just being there. Listening, dragging me around remote spots to take photographs or just listening to me raging over a coffee. Loyal friends. And that is what started me down this path. Loyalty.

Loyalty is a two-way street of course, and I would like to think that should it be needed, I will stand shoulder to shoulder with those same friends when they need me. I have tried to help others whenever I can, offer a shoulder to lean on, a little advice honestly given and from the heart, and just been there when needed.

At work, we are inundated with applications for help now that the tsunami of higher utility bills, NI increases and inflation are all coming together to hit thousands of people at the same time. The same can be said of Evie’s Gift as the application rate increases rapidly. But both charities will do what Evie would have done. They will be there, helping, listening and making a difference for as long as they are able. I have seen the best of people, and sadly I have also seen the worst too. People that take advantage or simply don’t care. The work that both charities do isn’t glamourous. It won’t make you cry on telly, nor will it ever be sexy. But it will get you through a difficult time, it will offer you the helping hand that you need to survive. Both charities will work quietly in the background helping thousands of people every year. It isn’t about seeking headlines or publicity. it is about making a difference.

Because if you can’t make a difference, then why are we here? Evie taught me that.

The Rubicon 49BC to 2021AD (Or however you write it these days)

Back in those warm and heady days of summer, I stopped taking sertraline. The idea was that I wanted to be able to cope with life’s ups and downs without chemicals blurring the picture. They certainly helped me through some of the worst times, and gave me the capacity to develop coping strategies. The last 5 months have been ‘interesting’ shall we say. No two months have been the same, and having to face the fourth anniversaries surrounding Evie’s cancer without the chemical prop has definitely been a challenge. When the darkness strikes it is a powerful foe. It is darker and longer than before, and can be all-consuming. While I was taking the anti-depressants, I let the wave of pain break over me knowing that, having survived it before, I would do so again. Now it is different. I can’t let it break over me as at this time of year it would be overwhelming. Now I have to stand my ground against it and fight back. I don’t hide from it, or deny it, but I have to put energy and effort into holding by ground as this time of year, and its challenges, are ‘new’ once again.

The clarity that the lack of anti-depressants has brought has reached into all aspects of my life now. It has also brought me the realization that for the last 3 years, the pills have masked so much, like how others take advantage of goodwill, or just rely on your weakness to get their own way. I know that my temper is shorter now, but you know what, it doesn’t matter. I saw a quote on the TCF Facebook page the other day, and I agree wholeheartedly with its sentiments; to paraphrase “ after what I have been through, I don’t owe anyone anything”. A few weeks ago I started to figure out that I don’t like being taken for granted. I was getting grumpy about certain problems in a way that seemed out of balance. Following Eve’s death, I set the bar high for preserving her legacy of helping others no matter what their problems. Working in the Charity sector pretty covers that off in spades. I get to be that person at work, for Evie’s Gift and in my private life. Work has been incredibly busy, and Evie’s Gift is accelerating away like never before. And that’s when the penny dropped. It was just ‘assumed’ that I’d be there to do whatever was necessary, drop everything, place my own needs on hold and jump when called. I have witnessed those with the least money giving so much more of what disposable income they have, while others who can clearly afford it, give little. They argue over a couple of £ for a donated item when the money is needed to support families facing some of the most traumatic times of their lives. Charities that we support seeing us as a commodity to be used without thought or compassion.

Watching as your daughter dies is about as bad an experience as you can get. It places demands on your resilience every single day; in fact every moment of every single day. There are days when I need the support of others just to stay upright. But too often recently that support hasn’t been there. The opposite has been true; I feel like I have had the life sucked out of me. Bled dry by people who use others. To mix a few metaphors, the straw has broken the camel’s back while crossing the Rubicon. It broke mid-stream and now I feel like I’m drowning. The historians amongst you will see the flaw in the metaphor. In 49BC when Julius Caeser crossed the Rubicon with the XIII Legion, it was shallow and easy to cross, so no getting washed away in the torrent. But hey …..

As I see it I have 2 choices, the easy way and start taking sertraline again and let the ‘users’ win the day, or find another path. I have chosen the latter. I’m not sure where this path will lead, but I do know that I am not going to be beaten by anyone or anything. My instinct is to fight back hard, but this time a different approach is required. Change. New ground rules. New me. New future.

A Little Sunday Night Nonsense

For the last 6 weeks we have had a little Sunday night ritual, which for me, has led to a bit of a repeat during the week. Bob Mortimer and Paul Whitehouse have just finished their third series of half hour programmes about fishing. For most of the time, nothing much happens. These two old friends prattle away at each other, teasing, joking and every now and then they catch a fish and Bob gets into a complete frenzy. Invariably during the programme Paul tells him off - “don’t wind” has become a bit of a catchphrase. I love this programme and have started watching the previous series on BBC iPlayer.

For thirty minutes I lose myself in this little vignette of life. I asked myself why I am finding it so addictive. Both men have serious health conditions and Bob Mortimer has talked about depression very openly. Bob had a triple heart bypass and Paul has had three stents fitted, yet they are able to joke about it all and take it seriously all at the same time. They eat heart-healthy food and, in the main, avoid the naughty stuff like cheese. What is it about this little programme that I feel so in tune with?

It’s very simple. I feel like I belong. The banter between them is very like that in the military, and they face their illnesses with a frankness that is refreshing. Most men shy away from discussing any form of weakness openly. Bob has clearly been shaken by his need for a bypass, yet Paul doesn’t walk on eggshells around him.. Instead, he recognised a friend that was struggling and intervened. He chides and takes the piss mercilessly but you can tell that he also cares deeply for his friend. I consider myself privileged to be invited into their private world for 30 minutes once a week to witness the openness and honesty that too few men can show in public.

I consider myself lucky that I too have a couple of friends that have been there for me since Evie died in a very similar way. Men that understand and care. Friends that I know will be there whenever I need them should the black dog appear again and gain an upper hand. I don’t have the serious health conditions that either Bob or Paul are having to contend with, but there are days when I feel as lost or helpless.

So for those 30 minutes on a Sunday evening or at other times when the urge strikes, I can watch a bit of TV and reflect on how my own life mirrors theirs in some way and count myself lucky.

Yes you can .......

Last Friday I set out at 7 o’clock from the Kellaway Building Supplies branch in Bath to walk the 84 miles along the Kennet and Avon canal and River Kennet to the outskirts of Reading. The plan was a simple one; walk and don’t stop until the 84 miles were done in under 48 hours. 84 in 48 had a certain asymmetry about it that was attractive. Like all personal challenges, there has to be an element of jeopardy at its core, the chance that it would fail, to both make it worthwhile personally, as well as being a meaningful fundraiser. I finished the 84 mile hike in 32 hours and 42 minutes. When I stopped in Reading my feet were a mess and I was shuffling along like an old man. Every muscle and joint in my lower body hurt, but I had finished.

This blog isn’t about the physical aspects of the hike, it is about the mental ones. The money that I was raising was designed to support my charity’s mental health programme. The overnight period is always bad on any endurance trial , for me the hours between 2 and 5am are the pits, and this one was made worse by a dense, cold fog that sapped my physical and mental energy in equal amounts. Walking alongside a canal when you can only see a few feet ahead of you and you are stumbling and falling regularly is tiring in so many ways. When daylight came around 0630 I was close to packing it in, but I didn’t. Why not?

Putting the physical pain aside for a while, the mental fatigue that I was experiencing was a chunky problem to overcome. The distance seems never ending, and as you are slowing down, it seems to take forever to cover each km. It wears you down. So, during the night I had taken every opportunity to sit for a moment on a bench and gather my thoughts, and each time I came back to a number of themes that kept me going. I had a back-up plan for leaving the path and could call on people to come and get me if I needed it, and I was walking alone and so I wouldn’t be leaving anyone else to carry on alone - that took away some pressure. Jumping ship would have been fairly straight-forward. But each time the thought of quitting came into my head, it was overtaken by other more powerful thoughts.

Firstly, I knew that the physical pain was time limited; it would be gone in a few days, so I could ‘dismiss’ that as a thought or reason for stopping. Secondly, many people had handed over their hard-earned cash to sponsor me and so I had a responsibility to them to give this everything I had. But the main strength I drew on was that I knew Evie was with me. I could almost ‘feel’ her hands in my back pushing me along. I talked to her constantly. I also knew that whatever discomfort I was feeling was nothing in comparison to the pain that she had endured in the early days of her brain tumour. Put simply I could not let her down.

When I met Sean (back up team) in Newbury for the much-needed bacon butties, I needed a plan. That plan was to break down the remaining 32 km into small manageable chunks and tackle them one at a time. As I said to Sean, I needed to manage my own expectations. I put plans in place to face down the fear of failure and make sure that I gave myself every chance of success. Sean agreed that I could take ‘all day’. Patsy had said to me on the phone that morning that ‘it’s only 20 miles to go, in the overall scheme of things that’s nothing’. She was right, so I reset my mental clock as if I was starting from scratch that day, setting out on a 20 mile hike. Something that I had done dozens of times before, except that this time I had 64 miles in my legs already, so I was going to be a lot slower!

I walked from station to station along the Westbury to London railway line that was paralleling the canal and I finally reached Theale, leaving me a piffling 10km to go. At that point it was a simple case of setting out again and keeping on going until I ate up the distance. That last 10km was tough going.

I know that a lot of people doubted that I could complete the hike. At many times over the last few months, and during the hike itself, I doubted it myself. When I reached the end, I could hardly climb into the van for the drive home. But I learned some valuable lessons. You can overcome doubts, and improve your self-belief. You can manage those doubts in a way such that they fade. Looking back now, the mental pressure that I have been under since Evie died has been immense. It has worn me down. In those early years, I was convinced that I had failed to keep her alive even though I knew there was absolutely nothing that I could have done to beat the cancer. But it has also proved to me that I cannot be broken. Where a mental challenge exists, it can be treated just like any other problem; broken down into its component parts and tackled piecemeal. But like all things, it can’t be beaten alone. This hike took the support of my wife, of Sean and his bacon butties and of a daughter’s love that is beyond measure.

What pleases me most about this hike is that I also managed it without the help of anti-depressants dampening things down. So when someone asks me now if I can manage what appears to be an impossible task, I can answer “yes I can”.

Rejoining the Real World

Two months ago, I began the journey to stop taking anti-depressants. I wanted to see if I could cope without chemical intervention: would I - could I - function properly and consistently? Would the pain intervene to a degree that it was too much? I felt that after 3 1/2 years, I probably had the capacity to be able to survive without them; I felt that I ‘should’ be able to cope without them. I also wanted to know what real life actually felt like, experiencing the real emotion without the dampening down effect that the sertraline had. I’d talked the idea through with my GP a while ago, then at length with my counsellor over many sessions and finally the pharmacist. The advice was to take it slowly and just see how things went. I looked at the timing, knowing that I was heading into the period of the year packed full of anniversaries; 4 years since Evie’s first headache in October, 4 years since we left on that holiday and 4 years since we were pitched headlong into the Paediatric ICU in San Sebastian with its diagnosis of a brain tumour, and the whole pain-filled months that followed through to Evie’s death on 11th January 2018 and the funeral on 1st February. But spring has Easter and Patsy’s birthday, the summer has my birthday and the summer holidays. Basically, there is no ‘good time’ wherever you look, so I decided to start just after my birthday in July; I had to start somewhere. One month halving the dose, then another month taking that reduced dose every other day, then nothing. I would keep an eye on things as I went along. The problem with analyzing it as you go along is that it is difficult to isolate feelings due to a reduced dose from those caused by irregular problems happening in the world around you; those unpredictable events that just pop up and you don’t see coming; GCSE results were a classic example of that. And to compound it all, there’s no parallel life or ‘control’ model to compare it to. The first proper ‘test’ will come on Evie’s birthday on 24th September; kill or cure?

To reduce any risk and help things along a bit, I had started to remove myself from situations and people that caused me hassle or irritation; the emotional self-preservation that I talked about last time. In a way I have built an emotional wall around myself to give the process a chance. I had to give myself space to learn what life was like without these people and events mixing things up and causing unnecessary distractions. I had to take care of my mental health. Helping others out when you can is all part of the healing process, but I have come to realize that I have limits, in terms of both energy and mental resources. I had stretched myself too thin over the previous three years. Sometimes it felt as if I was being taken for granted and that wasn’t helpful.

I finally stopped taking the pills a few days ago and the last remnants of the sertraline are now working their way out of my system. Has it worked? I have no idea as yet. It has been an enlightening experience that’s for sure. Flash points have been more common, and my fuse is definitely shorter - either that or there are more idiots out there than I first suspected! The rawness of some emotion has increased and the dark moods flash up more suddenly without warning and they are definitely deeper. When the black dog appears, he is bigger and darker than before. But ….. those dark moments subside just as quickly as they did before while I was taking the pills. So what I want to know now is “is this my new-new normal”, or will it evolve again and change over time? Where will it go next? More importantly, is it something that I can live with in the long term? I think so. I hope so.

Pats thinks that I have become more tired, less focused, more grumpy and even less tolerant. I’m certainly tired and get grumpy quicker. But I put much of that down to external factors that would have had that effect anyway. To get a real and valid view of the effect of cutting the drugs out completely will take time. I need a new baseline, a new benchmark to compare everything against. But I am feeling things more acutely again. It all feels real and undiluted. It also feels genuine and in some weird way, that is what Evie deserves. That heart-wrenching pain proving that my love for her is still alive and strong. To ‘move on’, to be ‘happy’ living life as normal, would be a betrayal.

What I want now is for my energy to be restored along with the drive to succeed. There are pieces of work coming up for both my job and Evie’s Gift that are going to require massive amounts of time and energy. If this works, I should now be able to channel the anger and emotion into one forward-looking direction. Put it to good use. I’m already able to think more clearly and plan ahead in a way that would have been impossible just 24 months ago.

I don’t know if I will stay free of the anti-depressants, but one thing is for sure, I have a clear and genuine view of the world now. I have suspected for some time that things may have been ‘hidden’ from me because of the sertraline. No more. I have control of everything that is important and that’s what counts. Looking back at the last 3 1/2 years, I have realized that I have spent too long placing myself second or even third to the wider world and that hasn’t been healthy. I have one simple mission in life and that is for Pats and I to preserve Evie’s memory, but with a difference. For those that have walked away or turned their backs on us, taken Evie’s name in vain, or simply found it too hard to talk about her, I’m no longer bothering to try and make it work with them any more. Previously I would have tried to explain, to cajole, to persuade. Not any more. Loyalty is a powerful thing, but it is also a two-way street, and I have enough genuine friends to survive whatever else this world chooses to throw at me. We have survived the single most cataclysmic event and so the rest is just white noise that I can tune out.

The anti-depressants have served their purpose. They got me through the worst possible time of my life. They gave me time and space, and the ability to survive. They helped me to deal with the pain in a way that meant I could understand how it had affected me, to learn - and accept - a lot of lessons about myself, to learn that I am a different person now, and just as importantly to see some other people for what they truly are. To look beyond the promises, the show and the words, at to look at their deeds and actions. It is sad that people promise much and deliver little, but I guess that is just the way things are. I have become adept at recognizing those empty promises straight away; it helps to avoid disappointment later.

But being self-aware is singularly the most important lesson that I have learned. I have learned to be honest with myself always. I am honest about the bad stuff too, recognizing my own flaws or weaknesses, and the impact that they have on both me and others near me. Self-awareness brings a clarity that didn‘t exist before. If I need the anti-depressants again, I will have no hesitation to use them; it isn’t a failure, only a recognition that I tried too early. For now though, I want to see what the world really looks like in this post-child-death reality. To learn how to cope, to survive and to love Evie in a new way.

I have also learned that there is a huge stigma surrounding depression and ironically that it is far more prevalent than we might think. The vast majority of people hide from it, either from their own perspective or when seeing it in others. Grief magnifies the impact of depression. I have seen far too often that if you hide from grief, pretend that it doesn’t exist, or run from it, that like a bungy-cord stretched to its limits it WILL slam back into you and take you down. Throwing yourself into work because you can then pretend that everything is normal, avoiding the loss, is a classic symptom. “If I am busy I don’t have time to think about it.” The avoidance of grief is a powerful enemy, one that you cannot beat or escape from, no matter how hard you try. Like a relentless assassin, it hunts you in the darkness, and eventually finds you. I’ve been there, seen it, done it and bought the t-shirt. No more. Grief has redefined me, changed everything about me, but it has also made me think about my life in a way that I wouldn’t have done before. I can’t say that I have embraced it or accepted it, but I don’t hide from it either. When it hits, it hits hard. A tsunami of pain that breaks over you. But I now know that I will emerge from the other side, with a little more experience to draw on next time. I have gone through those autumnal milestones around Evie’s birthday and her diagnosis 3 times already, and am about to embark on the fourth iteration. I’m ready to stand my ground and face it down all over again.

It is a cliché to say that if your body is broken you take drugs to fix it, so if your mind is broken, why wouldn’t you need drugs to fix that too? Anti-depressants aren’t a magic bullet by any means, and they have to work as part of a package of help; trust, friends, counselling, being creative, love of family and whatever else you may need. But they can give you the capacity to start your journey towards healing or just living again. I’m not out of the proverbial woods yet at all. But I can see dawn’s light seeping between the darkness of the trees. I am starting to get clarity in a way that I wouldn’t have believed was possible three years ago, and most importantly, I am alive. That in itself is a major achievement. I am not ashamed to say that I have come close to taking my own life. The black dog is ever-present. But I am still here too, to keep Evie’s name alive, and keep it front and centre, no matter if you want to see it or not. So for those that think I should have ‘got on with my life’ or that ‘it has been nearly 4 years, why is he still harping on about it?’, I have news for you. Unless you have walked in my shoes, then you will never understand. It will remain beyond your comprehension. But then I’m not seeking your approval, I don’t want it, nor do I need it. I am not going to try and make you understand.

So, thank you Mr Sertraline. It’s most likely not ‘goodbye’, and more probably ‘adieu’, but for now we can go our separate ways. But I’ll keep you on speed-dial just in case.

Emotional Self-Preservation

Evie died over 3 1/2 years ago. We are now approaching that round of milestones from the time she fell ill, except now it is four years ago, not three. In that time, we have experienced a huge spectrum of emotions and feelings, and even now there are days when it is all too much. I just want it all to end. But ….. the biggest difference that I have noticed in myself is that I now have the mental capacity to protect myself from others. In the early days, I instinctively knew that if I wanted to be able to be there to help Pats, that I needed to take some decisive steps like seeking out counselling and starting to take anti-depressants. I didn’t have the thought-processing power to understand what I was trying to achieve as such, just that I needed to do it. Now though, I can rationalise a lot of what is happening and take decisions accordingly.

Just after my birthday I took the decision to see if I could cope without the sertraline. So now I am taking half my normal dose for a month, and will then halve it again for another month, with the aim of being chemical-free by mid-September. It may or may not work, and if it doesn’t then I’m not bothered. I’ll up the dosage again. It isn’t failure, it’s just that the timing isn’t yet right. If it does work then I will be working through life under my own steam.

But to do this effectively I need to do something else too. I need to shed the burdens that I carry that do not warrant my time or attention. There are two things that are important to me; my love for the woman that I have known since I was 12, and preserving and protecting my daughter’s name and memory. Anything that gets in the way has to go. I am ready for the fact that a reduced dose of anti-depressant could (but might not) impact on my ability and capacity to cope. To mitigate that risk, I am unloading the peripheral stuff. The niggles that have scratched away at me for some time, distracting me from what is important. I’ve already got rid of a few minor niggles and am now removing myself from situations that annoy or irritate me. I’m not afraid to say ‘No’ when it is required. I’m no longer going to expend brain power or emotional energy on people that simply don’t understand what it is like to watch as your child dies in front of you. The ones that think that I should have ‘moved on’.

There’s a phrase that we all know: three strikes and you’re out. I’ve taken that a step further where my mental health is concerned: one strike and you’re out. It’s harsh I know, but what so many fail to grasp is that Evie’s death was so far-reaching that it will affect me until I die. The solution is straight-forward. I am going to remove myself from events, situations and people that don’t get it or that create situations that I don’t want to deal with. It’s emotional self-preservation. With reduced chemical input, I am making sure that there is a minimum of external input to have to face or cope with. Other bereaved parents will get where I am coming from, others won’t, but that is fine.

Last summer, I wrote a WW but never published it as it was so angry at a bunch of people in Melksham that were, in my eyes, nothing more than oxygen thieves. We stood our ground and were proved right. ‘Karma’ intervened and very shortly, one of the last of them could be gone from our lives for good. Loyalty and honour have become increasingly important to me over the last year. If you are there for me, I will be there for you. Let me down and I will cut you free. I have a limited supply of energy and will conserve what I have for the friends and family that need it. Life is tough enough without having to waste energy on those that don’t or can’t understand. One of the things that I wrote in that WW was that if you go toe to toe with a bereaved parent, you will lose. The reason is simple: we have experienced the hardest thing that this life can throw at us. We have survived hell, so we can’t fall any further. We have nothing to lose because we have already lost it all. But that realisation also means that we understand very clearly what we need in our lives to survive and if people aren’t there for us or fail to grasp how important Evie’s memory is, then I will quietly step away and leave them to their own little worlds.

Grief is a strange and unpredictable thing. It is different for everyone. It twists and turns, doubles back, or jumps about. But after 3 1/2 years I have come to recognise that in order to cope with those sudden and unpredictable changes as they occur, I need every ounce of strength that I have. I don’t need to be diverted by other things that soak up energy and time. In a way, that realisation is quite liberating. It means that I can focus on who and what I love. My wife and my daughter.

The only way to make a new road is to walk it.

Sometimes the truth appears in unexpected places. I’d love to be able to take the credit for the quote used in the title of this piece, but it is lifted from an episode of Star Trek: Discovery. That said, it is, I feel, entirely relevant.

The death of a child is so cataclysmic to our lives that the paths - or roads - that we have set ourselves no longer exist. Our previous choices, our futures, have all gone. Everything beyond the present is unknown, even our own needs and desires are blank. There are a hundred and one ways of describing it from living in a fog to being blindfolded, but the result is the same. We can see or predict nothing because everything that we had prepared ourselves for has changed. Our purpose has changed. Our futures have disappeared. What do we do with our lives now? We need to make a new road.

Because so much has changed and so much is unknown, setting a new destination for ourselves is impossible. We live from day to day, sometimes from hour to hour. So often we are asked “how do you manage?” and our response is “Because I have no choice.”. And that is how we build a new road. We get up, go through our day, go to bed and do it all again.

Most people get a destination or life goal and then make a road that leads to it, be it qualifications, promotions, new homes or children. When your child has died you make your road by surviving each day. You make the road by looking back at the road as it has grown. It lacks direction and meanders about but it is a road nonetheless; a road of survival. It is like no other road and is personal to us. There will be times when it drifts off in the wrong direction (if there is such a thing) and others when it slows or stops altogether. It doesn’t matter. The new road is growing and each day or year gets a little easier to build.

One day a time may come when we can look ahead a little and set a destination for the road to take. But if we don’t then the road will keep growing slowly, taking whatever form and direction that works best for us. Others won’t understand the road, nor its lack of direction. They will try and convince us to set a destination but we don’t need one. What we need is to build our road our way in our own time. And we will do that by walking it every day. You may not realise it, but you are already building your road. It may take a while, but that’s okay because there isn’t a rush.

One day I will be with Evie again and my road will be complete.

Clarity: Life Viewed Through Pink-Tinted Spectacles

I’ve touched on this subject before, but as with all things involving grief, life has changed and my thoughts and feelings have changed with it. I wrote in Eggshells that my world had polarised into black and white, with no grey any more. At one end of the spectrum was death and everything else was at the other. Put simply, if whatever was happening didn’t involved someone living or dying, it wasn’t important. That view still holds true, but isn’t quite as stark as it was then.

The life or death end of the spectrum is still pretty small, but there are now a few ‘charcoal’ areas along with the black. I’m listening to the radio news while writing this and an article illustrates the point well. Harry and Megan have named their new baby Lillybet without asking permission from HM The Queen and the BBC seems to think that it is newsworthy. My view is simple - so what? - not only is it unimportant, but why is it the lead news item?

Evie’s death has given me a very different perspective on life. I don’t get wound up by the news, vaccinations or my own health. The only things that matter to me now are those very personal things associated with Patsy, family and Evie’s Gift. Friends find it strange that I’m not ranting over lockdown restrictions. That I don’t feel aggrieved at the perceived loss of personal freedom. But you know what, when you have stood at the bottom of your 13 year old daughter’s bed as she took her last breath and died, nothing else comes close. NOTHING! I simply don’t care. Interestingly as an aside, the social isolation of lockdown didn’t impact on us as we were already isolated, abandoned by so many. the rest of the world joined us - ‘welcome to my world’. So I’m not going to expend energy on it. For the second time in my life I have been diagnosed with a benign form of skin cancer and I don’t give a sh1t about it. It is what it is. If left untreated it could become a bit nasty, but that’s as far as it goes. I had to be nagged to go to the doctor.

How I live my life is now more important than many other things. Evie may not be here, but my role is to carry forward the memory of her, doing what she may have done. Looking after others, looking after wildlife and generally not being a lousy person.

Her death has given me a clarity of vision, not through rose-tinted spectacles, but through pink-tinted ones, because even at 13 she loved pink and wasn’t bothered what others thought. The last 12 months have been a challenge in so many ways but I learned something quite valuable when you come up against people that place their own interests ahead of those around them. If you go toe to toe with a bereaved parent, you will lose because we will stand our ground and grind you down. We have experienced the single worst thing that can happen to a parent and so nothing else matters. We have nothing left to lose. The clarity of vision is a gift as it helps me stop wasting time and energy on things that I can’t change, or don’t deserve my time. But ….. the cost of that vision is too high.

Rolling Along Like a Bent Penny

How are you doing? The most common question that I get asked. As my Grandad used to say, my answer is now “Rolling along like a bent penny!”. That one little phrase describes quite accurately what it is like three years after Evie died. It is rare to find something so simple that sums up something so complicated. It’s all down to the imagery that it conjures up.

Most of my days wobble along, but generally head off more of less in the intended direction. Never really straight or swift, just drift along, gently meandering about a bit. Every now and then the ‘penny’ hits a speck of dust and wobbles quite violently but it doesn’t quite fall over. The oscillations can be quite disturbing for a while, but soon enough it goes back to the random wobbles. Every now and then, the penny diverts and performs a small loop, or even heads off in a new direction for a bit. It is almost as if the penny has a mind of its own.

Sometimes though the wobbles become so bad that the penny falls over completely. But unlike 3 years ago when Evie died, and even for the following 2 or 3 years, somehow, and I have to confess that I have absolutely no idea how it happens, the penny is back up again after a short interlude and carries on rolling along its wobbly way. This is the biggest change in my life. The getting back up part happening almost without me noticing.

Periodically, it seems as if the penny is taken off to a workshop or smithy and given a bit of a pounding to try and get it back into shape. But just like a car panel that never looks new after a bump, so the penny is back to its wobbly ways soon enough.

That’s what post-child-death life looks like. And if that’s as good as it gets then I suppose that’s good enough. I’ve learned to carry the pain, to live with it and recognise that it is what I look like now. Bruised, dented and prone to falling over every now and then. But … I get back up again because I have survived the worst that this world can throw at me, and I wobble off into the future. I tried running from the pain but the pain is part of me, the pain honours Evie, and it forms the wobbles, it knocks me down occasionally. It is who I am.

Mental Health Awareness Week - Small Wins

The third and final piece from my work for Mental Health Awareness Week.

As our third and final foray into Mental Health Week, I'd like to explore how 'small wins' can be beneficial.

A lot of mental health problems build over time until a point is reached where the whole thing is completely overwhelming and too much for an average person to cope with. It may not lead to suicide, but it can lead to mental breakdown or a lot of time off work for stress.

How can small wins help? Most of us have a mountain of chores and tasks to deal with on a day-to-day basis, and work adds innumerable other tasks. It can all feel like too much. I'm a believer in lists. make a list of the jobs that need doing and a quick note of when they have to be done by. As I complete them, I score them off and move on to the next one.

This way of dealing with things has a couple of benefits. Firstly, once something is completed and out of the way, then you feel like you are making a little headway no matter how small the task; emptying the bins, e-mailing the council about a query on your council tax bill, or chasing an unpaid invoice. Each successfully-concluded task is a small win, and a little ego boost. In the same way, a big task can be broken down into smaller ones to make it seem more achievable. Secondly, as you near the end of the day or week, you see a diminishing list and get that urge to crack on a bit and either clear it or sort out a few more. That in turn brings a stronger feeling of accomplishment.

Small wins can also relate to different goals. After a major trauma, we can feel as if we are just drifting and not in control of our lives. But we can create artificial short-term goals, giving us something to aim at. Maybe completing a small project, or a savings target. When you've completed it, you create another one, perhaps a little bigger or more complex or a little further out into the future. When you reach that one, you repeat the process. Each time you manage a small win and confidence builds again. You are in control of the target so can make it as easy or tough as you choose. The point is, that you create it, so hold your destiny in your own hands. When Evie died this helped me manage time in a way that didn’t feel endless. It created focus and a destination. It stopped me from drifting even though I knew that it was artificial. I needed something to aim at and it didn’t matter what it was or how far away. It just had to be achievable.

I hope that over the course of this week you have seen that we can do many simple things to help ourselves, or give colleagues a gentle nudge in the right direction. It may be Mental Health Week, but that doesn't mean that the problems will all disappear next Monday.

What can you do to help yourself or others?

#showyoucare

Bryan

Whatever it is, the way you tell your story online can make all the difference.

Mental Health Awareness Week - How About a Coffee?

Once again, this is a piece that I have written for work, but I think that it has relevance here too.

As part our continuing involvement in Mental Health Awareness Week, this message is about having a chat over a coffee. There will be a third piece in a day or so talking about Small Wins.

When I say 'chat over a coffee' I don't mean gossiping about the neighbour's bin habits or whether Manchester United will ever be as good as when Alex Ferguson was in charge. I mean talking about your well-being. Talking about what is worrying you is most definitely not a sign of weakness, it is a sign that you have the strength to take control of what is bothering you.

Like our earlier piece focussing on bilateral movement and being creative, it is the 'why' that is important. For most of us, I suspect that when we have a worry, we sit quietly and think it through - or as likely, ignore it completely. The trouble with that approach is that you can often end up revisiting the same thought over and again. You don't make any actual progress into dealing with or solving the problem. This is because your brain isn't challenged to progress the thought process.

If you can talk through a problem with someone that you trust - without time constraints especially - then your brain starts to work two or three sentences ahead of your mouth. It digs deeper and delves into the problem because you want to put across a coherent point.

It may well be that you choose not to share a revelation that you uncover with whoever you are talking to, but your brain has got there and started a process of self-awareness that is beneficial. When Evie died, I did what all self-respecting military people do when presented with an insurmountable problem; I sat and thought it through like any problem, knowing that all I had to do was break it down into its component parts, fix each one, rebuild it and hey presto problem solved, and Evie would be back. Not surprisingly I failed miserably because it was impossible no matter how self-reliant I was. By talking the whole thing through with my counsellor over many sessions, I began to understand why I was acting the way I was, how I could start to change my behaviour, and recover the capacity that I had lost to the whole fruitless exercise. That only happened because I talked at length, allowing my brain to run free and explore what I was thinking. I began to understand myself and now although I will never 'accept' Evie's death, I can live with it.

The process is just as valid with a whole load of mental health problems and worries. It doesn't have to be a counsellor that you talk to, it can be a family member, a trusted friend or colleague. Anyone that you feel comfortable with. But as well as being honest with them, you have to be honest with yourself.

Again, if someone you know has worries, get them to unload - you can't always get rid of the problem, but you can start to understand it and that is incredibly important. But you must listen! And don’t just do it once. make it a habit. The more you talk, the more you will understand.

Start booking that chat over a coffee.

Whatever it is, the way you tell your story online can make all the difference.

Mental Health Week - A Few Simple Ideas

I have written three short pieces for work, but thought that they might be useful beyond that audience.

How many times have you heard someone saying that being outside is good for you? Usually, it is accompanied by something relating to fresh air and not being in front of a screen, phone, the TV and so on. It might be in relation to walking or gardening.

That's the 'what', but more important is the 'why'. For those of you that have kids you'll know only too well that saying that something is good for you is all well and good, but it usually falls on deaf ears unless you can answer the inevitable question "Why?".

Stress and anxiety have a way of taking over our minds, forcing themselves front and centre at the most inconvenient time; the middle of a meeting, or a detailed discussion on an important subject. When it happens, it can be incredibly challenging to overcome it and get back to normal. If there are deeper problems relating to debt, family problems, redundancy or bereavement then it can be overwhelming, and the temptation is to bury it deep, hide and keep going. I can tell you from personal experience that this doesn't work. It will come and bite you at some point, you cannot hide from it, it will follow you like a shadow. It is corrosive and will slowly eat away at you too.

So how does going for a walk combat something so enormous? It isn't just walking. Doing something creative like painting, gardening, or writing achieves the same end result. For me it is photography and making upcycled bird boxes from old wine corks. This is for two primary reasons.

Firstly, and very simply, being creative means that you have to concentrate on what you are doing for a while. That in turn gives your mind time to rest from whatever is causing it a problem. It's still there afterwards, but it isn't wearing you down constantly. Oddly, doing something very simple like walking or taking a photo has a disproportionately large positive impact.

Secondly, being creative or even just walking uses both sides of your brain alternately because the left side of your brain controls the right side of your body and vice versa. So, when you prune the rose bushes, hold the stem in one hand and cut with the other. This is called bilateral movement. Regular exercise is known to reduce blood pressure and the 'fight or flight' response. By using your brain in this way for just a simple process it allows your brain to process whatever is troubling it at a sub-conscious level. Moreover, if you walk with someone else, you will slowly match their pace - movement synchronicity - which in turn, and the science is a little less proven here, improves memory and recall as the act of being in sync with someone else improves self-esteem and well-being. Regular exercise may also boost mood by increasing the production of a brain protein called BDNF and that helps nerve fibres to grow.

These simple techniques aren't a silver bullet and should be part of a wider package of support, but it is very easy to do.

If you have someone working for or with you that is struggling with mental health issues, in whatever form, then why not just have a chat and suggest something like these techniques to help them start to understand what is happening? Maybe give them a creative task to do that is work-related? Design a new poster for staff meetings? Draw up a new tweet? Create some planters for the office? If they have hobbies like photography or writing, then encourage it. It will cost you very little or nothing but could reap huge rewards.

#showyoucare

No Right or Wrong

A little over three years ago, Evie’s remains were buried in the cemetery next to her old junior school, and just a few yards from her Poppa. Her gravestone is a beautiful and fitting memorial to the special girl that she had become. Each week we go and see her and both of us read her a poem for that day of the year. We take presents, flowers and of course, painted rocks.

For me, her grave is an anchor, a place where her physical remains live and I suppose in some way it is a tangible connection to her. I could never move away from the area, because that would feel like I was abandoning her. In the same way that I feel so strongly connected to this house. Evie was born here and she died here. Patsy doesn’t feel that same connection to her grave. It is one of those examples of how people grieve differently, how different places or events have different meanings. Neither of us is right or wrong, it just ‘is’. I suppose in some way, we buried her because that is what people do.

So after a lot of discussion, we are starting the process to bring her home. Have her here with us once again. There is the usual mountain of paperwork to go through, and some of her remains will have to stay in the grave for us to retain the plot. So why do I feel lost? I should be glad to have her home again. Why do I feel an intense sadness? Confusing, and what I feel right now is truly unknown. I don’t know what I feel. Relief? Confusion? Loss all over again. The pain of her death. Patsy is clear on her feelings. I can’t get to the bottom of it. I have no previous experience to call on to help me figure it out. I will only know what it feels like when she gets here; if she gets here. It may be that it isn’t possible.

I’m throwing this one out there, simply as a way of forcing my brain to think it through as I write this down. The writing helps me to process it, understand what my head is thinking and my heart is feeling as I re-read and amend it. At the moment, there is an incredible sadness floating around me as all of those feelings around her death and burial are revived. The body armour is on and I’m ready for battle all the time. I’ve talked to Evie about it of course, asked her openly what she thinks. For me, I simply don’t know. I’m not confused about bringing her home, but rather about how I am going to feel when she is here. Maybe I am sub-consciously protecting myself against the council refusing permission. Maybe I will feel ‘complete' again when she is home? Maybe that quite literal missing piece of the puzzle will slot into place? I’m not looking for advice on how to deal with this, just trying to understand myself. Trying to make sense of how I feel about it.

There’s no right or wrong answer here, just the chance to have my girl back home again. And that can’t be wrong.

Written by the Stars

Last night we were watching an episode of ‘New Amsterdam’ on Netflix, and in this show the Medical Director of a large New York hospital has been diagnosed with throat cancer and his treatment isn’t working. The news tipped him over the edge and he ranted and raged about how he didn’t want to die and didn’t understand why his impending death was so arbitrary. He believed that everything had to happen for a reason. Jump to this morning and someone bought a copy of Evie’s book ‘Written by the Stars’ where she writes so eloquently about two young girls that, together, overturn centuries of a patriarchal society allowing women to decide their own futures. Their destinies are no longer written before they are born or play out to a pre-determined course of events.

My small brain, promptly linked the two and I began to think once again, as I have done so many times, why Evie was predetermined to die. Why out of the 7 billion people on this earth did she have that one cell sat on her hippocampus that went rogue and killed her? How could she be so happy and healthy one moment and 13 weeks later be dead? Was her disease arbitrary? Why? Over the last 3 years I have spent vast amounts of time trying to figure that out.

We naturally look for explanations and even someone to ‘blame’. We have to put a label on it so that we can understand and categorize the event. Everyone tells you the same thing - don’t try looking for an explanation because you almost certainly won’t find one. You end up going round in circles over and over again.

So if we can’t find an acceptable explanation then what? What is it about? If there is no-one to blame what do we do? Even if there is someone to blame, in real terms what will it change? Nothing I guess. So if I come to the conclusion that Evie’s illness was some random act then what does that mean for me? Quite simply if there is no reason for it, I can’t unpick it. I can’t make it better. It isn’t about acceptance or moving on, to me it is more about understanding why I feel like this, and how that feeling is impacting on me and those around me.

Evie’s cancer was ‘unpredictable’ by which I mean that when she was conceived, there was no way that we could have foreseen what was coming. It wasn’t exactly arbitrary, but there was nothing that we could have done differently to reach a different outcome. Who is to say that if a different egg had been fertilized that day that the same result wouldn’t have happened? The frustration isn’t with the randomness of her death, but with our inability to fix it, to bring her back or to prevent it from happening in the first place.

To some degree, Evie’s future and her cancer were truly ‘Written by the Stars’ and in her case, no amount of determination or belief could have changed it. Ironic when you consider the story that she wrote so beautifully. No matter how hard I try, I can’t change her, or my destiny. But ….. I can love her in a way that no-one else can.

A New Yardstick for Time

How do you measure time? Do you move from holiday to holiday? Do you mark time by your birthday and how old you are? Do you have a yardstick set around the weekend? Subconsciously we all measure time in some way and have a yardstick to measure it against. “Just a couple of days to go until Saturday!”.

We measure the passage of time by how long Evie has been gone. For us, time stopped at noon on the 11th January 2018. The clock reset, and time started again at that point; now everything else is compared to that point in time, and strangely it only seems to move in one direction - away from Evie’s death. Now I know that you can’t go back in time, but for me it is as if ‘before’ never existed as time in the conventional sense, but has been compressed into one moment. Our lives are measured by how much time has passed since her death.

On Monday 11th January it was 3 years since her death. As we look through photographs each Saturday morning, trying to find one for Photo Saturday on Facebook, it is a somewhat surreal experience. Time has frozen, stopped in its tracks with all of those photos set at one moment; 11 January 2018. We move further away from that moment with every day and and our concept of time moves with it. Our perception of time has changed to become one dimensional. Her death feels ‘close’, as if it was just yesterday. How can 3 years have gone by? Looking forward, there will come a point when she will have been dead for longer than she was alive. That is a moment that will be crippling. It is inevitable of course because we can’t hit the ‘pause’ button.

So, taking these thoughts to the next step, why is it relevant? Why does it matter? In some ways it doesn’t matter because we can’t do anything about it, but in others it affects your outlook on life, and how you feel about what is happening around you. It is another indicator of why life for a bereaved parent, or in fact anyone that is grieving deeply, is so different. Is it a fixation? Yes, absolutely. But importantly, it means that we are backwards-looking not forwards. Because we measure time by how long our child has been gone, planning and looking forward in a constructive way is incredibly difficult. Our yardstick is constantly changing. It takes an enormous amount of willpower to make major decisions about our future, where we might like to be career-wise or in life generally. It feels alien, disloyal to our child to be planning ahead. I want to reach back and pull her back towards me.

Before Evie died, when I was a mere youngster of 38, leaving the RAF, I set a goal - to be the CEO of a charity by the time I was 50. A yardstick of 12 years. Now in terms of personal goals I can’t figure out what I want to do next week let alone 12 years hence. I still need markers in the sand, to have something to aim at, but they are minor; a holiday, a meal. The next blog.

So my yardstick of time isn’t a yardstick at all as it grows each and every day - looking back to the day that our amazing girl died. Is it healthy? Probably not. Can I break out of it? Probably not. Can I live with it? Hmmmm ….. I don’t know. Answers on a postcard please. All I know is that I don’t want it.

I Will Honour You

There’s a poem called ‘To Honour You’ about how we honour those that have died, quite simply by getting up every day, and remembering them. For me though, that isn’t enough. I need something else, something more permanent and meaningful. When I’m dead and gone, something has to remain that has Evie’s name all over it; something lasting and of value. Evie believed in a Roman writing that as long as people said your name, then you aren’t really dead. Evie’s Gift will, all being well, continue to help the parents of critically-ill children, and EvieOwl will continue to make people smile when they see it at the Royal United Hospital in Bath. Her book ‘Written by the Stars’ will be read to children, and we will continue to find other ways to preserve her memory - to honour her.

But that’s not enough. If Evie were still alive, what would she be doing now? What would be important to her? What would she seek to change? That in turn leads neatly into how we can achieve those things in her name to honour her memory. So, having given it some thought, I want to make some changes in my life, to reflect the kindness that Evie showed others, to try and create a life that she would have nagged me to create. Maybe some of it would have been a bit faddish, but knowing her, she wouldn’t have started something unless she believed in it.

So ….. what about a plant-based diet? Errrr …. No! I think I can safely say that vegetarianism would never have been something that she would have considered unless you could still have steak or bacon sandwiches.

But there are other causes that she would have got involved with. We now have a large number of bird feeders in the garden with nuts, seeds, fat balls and the like. We’ve just put up another one with 4 more feeders on it, along with 2 more birdbaths. We buy bird seed 20kg at a time! We’ve also created a number of small piles of logs for bugs and the like to overwinter in.

Like all of you, we recycle our rubbish, but now we are more careful and recycle everything that we can, including the tea bag contents that used to go in the bin. Now they go into our compost bin. Evie would have inherited the world from us, so it seems fitting that we do our bit to reduce the damage that our generation is doing to it.

Covid-19 has forced us to shop local. Buying local meat, fruit and vegetables not only reduces airmiles but also supports local businesses, and we eat seasonally. No more buying mangetout all year round. Tesco won’t miss my £30 a week, but it might just make a difference to the local farmer. Not only that, but it tastes better and there’s less waste because it doesn’t go off as quickly. Our butcher knows which cow we have just bought a part of. I think that she’d approve! Is it a bit more expensive? Sometimes, but what the hell else am I going to spend the money on?

Every year we plant a flowering cherry tree on her birthday, but we have also planted two other small saplings and will aim to do more as and when we can. If we can reduce CO2 in the atmosphere and provide a habitat for more birds then that has to be good.

I’ve been upcycling corks for some time now, making bird boxes or Christmas decorations, all to give them a new lease of life rather than go to landfill.

Finally, I’m working on a grand plan. To buy a few acres of woodland and turn it into something wonderful for wildlife. I want to plant it with English tree varieties, and if we can manage it, make it a sculpture garden filled with pieces that reflect the wonderful person that she was. The first piece is on order and will be with us in the Spring; a young girl cuddling a polar bear.

Will Evie approve? I don’t know of course, but I would like to think so. The point is to honour her, then preserve her memory and do something to make a difference too. Evie may be gone, but her influence hasn’t.