I’ve never written about how music affects me, although I have mentioned that’s there are tracks that I don’t like to listen to so much these days. A little while ago I was introduced to M83 by Jared and their track ‘Outro’ is absolutely something else. Lyrics have different meanings to everyone and that’s what I like about music, you make your own mind up, you feel what you feel and you take what you can from the music. Whilst M83 Outro has very few lyrics, for me they absolutely connect to where I’m at right now. I’ll try to break it down the best I can.
I was king of my own land (Although this is often listed as ‘I’m the king…’)
For me this is everything that was, I had everything, absolutely everything. A lovely wife, two beautiful boys, a good well paid job, a nice house, amazing holidays, and I was loved and able to love. I absolutely felt like a king. My land being the four of us, our adventures, our time together and the future we planned.
Facing tempests of dust, I’ll fight until the end
This is how things are now, and quite often how my head feels. I have many ups and downs which seem to come and go quite randomly. The past couple of weeks hadn’t been so good. I like my walks to help me process why I’m feeling a little sad, and my walks usually cheer me up. Today I wasn’t at work and went on my usual walk, but it felt strange because there was no sadness today and it took me a while to feel comfortable with that. I thought about my upcoming workshops at the UXLibs conference and how that might come together. I felt excited about stepping back into that field of work, at least for a short while. The sadness will return, I don’t know when, or for how long, but for now we’ll go with it. The ups and down, the sadness, the excitement are definitely the tempests of dust that I’m just going to need to fight all the time. I accept that and I’ve become quite good at it – they’ll never beat me and I’ll keep fighting.
Creatures of my dreams, raise up and dance with me
For me this is sometimes a battle and sometimes wonderful, it links very much to my post about memories. I see Beth all the time, I dream about her, I dream about how things used to be. I remember how things used to be. BUT in so many ways I love how things are right now. The adventures the boys and I have had, the phone calls with Ethan whilst he’s at Uni in Brighton, the excitement in his voice. The games of pool with Jared at the pub and how he’s always going to beat be tonight! My job, I love my job and the people we help and make a difference to. The dance is the conflict, how can I love what I have now, whilst missing what I cared for so much? I guess I’ll always be dancing to some extent, perhaps we all are.
Now and forever, I’m your king
This lyric really gets me, I hope she’s proud of me, proud of how I’ve managed and gone on over these past three years. I hope she’s pleased that I chose a new profession and that I love that as much as I do. More that ever I hope she feels that I will always be her king!
Let’s venture into Mothers Day and all that comes with it. It’s a cruel day really because a lot of people no longer have a mother or they don’t see their mother, or for some other reason the day is hard to stomach. There is a lot of marketing around Mother’s Day now and it seems to build and build as much as Christmas. I am lucky enough to have my Mum around and I’m greatful for that, because her and my Dad have helped in ways they’ll never know over the past three and a half years. Of course at the same time, my two boys no longer have theirs and this makes me feel somewhat guilty. I can’t really make a big deal of Mother’s Day for my Mum when they have no one. I made a phone call when they weren’t around and other than that I did nothing. My Mum doesn’t mind, I’ve never been one for cards or flowers or presents, it’s not a big deal. She’d probably think it strange if I bothered more. But I couldn’t really do more if I wanted to anyway. That kind of makes me sad.
So then there’s the boys, who don’t want to acknowledge Mother’s Day in anyway, they seem to want to forget that it should have any meaning to them, like they don’t have a Mum at all. This hurts, it hurts me quite a lot. Today I’ve thought about Beth on and off all day, I’ve thought about how much of an amazing Mum she was, I’ve thought about how she would have loved to see the boys today and see how they’ve grown up, I’ve wondered how different they might have been if she’d have been around and I’ve thought about how much I miss her and miss her help and input into everything. Yet the boys seem to want to bury it all away, Mother’s Day doesn’t concern them. I find it very strange. I think maybe it’s too hard for them to acknowledge, and I think maybe they don’t want to feel sad, I think maybe they just don’t want to hurt. I don’t blame them, it’s hard.
Then there is the selfish side of me, the side of me that thinks I am both parents at the same time, I have to be the bad cop and the good cop all in one, I have to sort school things, meals, bills, cars, work, holidays, trips away. So where’s the thought for me on this day which is supposed to represent one half of parenthood? Today it’s been nowhere, other than my sister calling me to say happy Mother’s Day, which meant far more that I let on and kind of made my day. As I type this the boys have finished their Sunday dinner that I cooked and have both headed out to the pub to play pool. I’m left here feeling quite miserable really and wondering what it’s all for.
But that my friends, is grief! It’s not always about feeling sad because you lost someone, it’s about dealing with and navigating your way through what has been left behind, it’s about navigating other people’s grief and trying to rationalise everyone’s feelings along with your own. It’s a mine field. It’s about not being pissed off because your boys went to the pub on Mother’s Day, because that was right for them, that’s what’s right on their journey. I think Beth would probably be pleased, she’d be pleased they had people to go and do that with and pleased they have a life beyond me and her. I think as we go on into this year, they will continue to find themselves, Ethan in Brighton and Jared here in Hull. Their requirement for me is definitely dwindling and I’m sad I have no one to be here with watching that happen.
Yes, Mother’s Day is a tricky one to mentally navigate and I’m not at all sure how I feel today, there’s no manual that tells you how to be, I guess there’s not supposed to be.
Happy Mother’s Day to everyone out there, everyone who needs to hear it today, you’re doing a great job!
I want to talk about memories. They sometimes seem both a blessing and a curse. They both sooth and hurt. They make you smile and they make you cry. I have a lot of memories, memories from when Beth was alive, we shared some amazing times, both before and after having children. Those memories sometimes feel so alive, like you could almost reach out and touch them, reach out and touch Beth. Yet at the same time, they are so far away and serve only to temp and taught you. Some of my fondest memories aren’t necessarily what you might think. One of my favourites, which always pops into my mind when I’m on a little walk, is of the two of us being sat on a bench watching the Deep aquarium being built by the river. It was a warm summer evening, it must have been 2001. It’s always so vivid and I’d do almost anything to reach into that moment. It makes me smile as I walk past the bench, but then in the next step makes me incredibly sad, that she’s no longer with us and I can’t ever experience what I felt then, again. It becomes a mix of emotion, all jumbled and so hard to understand. You smile with sadness, it’s a funny feeling and one, I guess you’ll never know until you loose someone who’s part of that memory.
All the memories we made with the boys, all the places we traveled and all the things we did. Like moving pictures in a gallery that you can stand and looks at, but only behind the rope, because they’re too precious to touch, so near, yet so far. An afternoon at the baseball, followed by a night in Disneyland, the theme parks we visited, the rollercoasters we rode. The long drives through France, the times in Florida, the beaches, the pools, the cars, the beers. Just being together. All there, all so clear, yet out of reach. Like watching a movie that you were part of, but there will be no more sequels, all you can do is rewatch, over and over and over.
Since Beth passed I’ve made a lot of new memories with the boys. We’ve had some great times and some crazy adventures, yet sometimes I look back and feel like there was someone missing, I smile but then feel sad because Beth will never know what we went on to do. I don’t like that we’ve gone on without her. Our happy times, often filled with thoughts that Beth would have loved this, or, there’s no way Beth would do this, she’d be watching and laughing. These memories do feel different though, these memories have sequels planned, just not yet written. These memories are what make me excited about the future. Evenings back at the beach, paddle boarding as the summer sun goes down, me and the boys on another crazy adventure.
It’s hard to understand what I feel most of the time, am I happy or am I sad? Am I a bit of both? I do know that I’m happy sometimes and I do know that I have my sad moments, I think everyone does. Perhaps that’s just part of life, part of navigating our thoughts and feelings. I guess the trick is rationalising them. Yes, memories are both a blessing and a curse, but without them our lives would be emotionless and our loved ones really gone forever. That’s got to be far worse than a happy/sad tear sparked by something quite random on a walk one lonely Thursday morning in late February.
I don’t like winter and I never have. I always struggle through it in some way or another. Since I lost Beth the winters have seemed darker and more lonely than they ever were, this winter particularly since Ethan went off to Uni. I find myself obsessing about it getting a little lighter each night, even though it’s just minutes, I don’t like that dark and find no comfort it in. Noah Kahan sings about the ‘Stick Season’ which if I’m correct is a term from Vermont used to describe the time after Halloween and before the first snow of the year, where its grey, cold and damp. A very miserable time of year. The thing is, where I live, our winter is a perpetual stick season, it’s never really freezing cold, it’s just damp, grey and pretty miserable. We’ve had an awful lot of rain this winter. However, that said, regardless of the weather I’ve tried to make the best of it. I’ve made sure I’ve gone out for a walk most days and I’ve tried to look for the wonder around me in the small things that I see and hear. I figured that Beth would have given anything to be here, even on a cold damp miserable January day, she doesn’t have that luxury, but I do. What I’ve found is that winter is actually full of hope and a strange raw beauty, even on the most grey of days. The waves in the river, the cold wind on my face, the reflections in the puddles, the splash of rain and the sound it makes, the sounds of the birds, the sunlight as it peeps through the clouds, the sunsets and the rainbows. All these things, Beth would have loved to experience but never can. I do get to experience them and they’re quite wonderful. Today I saw the first bunch of snowdrops flowering, and I noticed the daffodils sprouting, both made me smile and brought hope for the year to come. Whilst I still don’t like the winter, it feels more like the beginning of something than ever before, so much to look forward to and so many possibilities as we move closer toward the spring and the nights begin to draw out. Everywhere you go, there are things to make you smile, no matter how small. You just have to open your eyes and not be afraid to wonder at the smallest of things. There are many people who will never see them again. You can, enjoy it and smile!
It’s interesting how thing change, how family dynamics change, but it’s also interesting how some things stay the same, how people and mindsets stay the same. Things for us changed dramatically three and half years ago as any readers of this blog will know and it is both wonderful and upsetting to see how we’ve dealt with and adapted because of that change. I have two boys, both brilliant lads who I’m incredibly proud of. The eldest (18), so desperately wanting to hang on to the old Christmas traditions we had when they were younger and their Mum was alive, but the youngest (14) really not to bothered and interested in what’s happening now rather than what once was, infact I think it almost annoys him. I worry that he’s trying to block the past out because it hurts. I’m not sure where I fit on that spectrum really, but I think I’m more about the new and moving forward whilst fondly remembering how things used to be. This is our fourth Christmas without Beth and it’s been different every time.
Since Beth passed, I don’t really care for Christmas, if I’m honest. It was her favourite time of year and she really brought Christmas to our house in a big way, over the last three years I’ve tried to make it nice for the boys but to be honest, I’ve been glad when it’s over. But, this Christmas is different in that Ethan started Uni in September and he’s back home for the first time. It’s so nice to have him back and have the three of us back together. For me that’s what Christmas is about this year, it’s about hanging out together. Being the family that we now are, which is very different to what once was. Three guys living together who are just as much mates as anything else, each with our own issues, but each understanding them and at the same time becoming frustrated and a little concerned for each other. It’s a dynamic that grew over the last three and and a half years and I feel a little sad and guilty because I can’t understand how Beth would ever fit into it, although I guess it’s a dynamic created from her absence, so she never would. Perhaps if you believe in fate and the bigger picture she was their to start us all off on the right path and was never supposed to be here now. That both comforts me and makes me sad.
I often wonder what would have happened if it was me that passed and the boys had been left with Beth, I don’t know if that’s healthy or not. I know she would have done some things very differently and I know she would have focused on different things. I don’t know that the boys would have got into mountain biking or water sports and I think that I’m more relaxed about what Jared can do at his age than she would have been. But ultimately we had the same values and I would have trusted her to do a brilliant job of their upbringing, regardless of who they had around them.
I also wonder what Beth would have gone on to do if I wasn’t here, would she have made such a massive change as I did, or would she have continued on the same path. I hope she’d have taken the opportunity that such a hideous situation affords and made a change and done something she felt really passionate about, perhaps working with children in some way or another, she was always good at that. Would she have stayed in Hull, or moved closer to her parents and her sister? it’s hard to tell and I guess that doesn’t really matter now.
So as we move on into 2024, I’ve started to reflect a little on the past year. Whilst it’s clear that the three of us have come a long way and achieved many things, I haven’t enjoyed it, I have enjoyed very little about 2023 and I’m glad it’s almost over. The things I’ve loved were our visit down to Thorpe Park for the weekend, our two weekends in Blackpool and our times at the beach and in the sea, paddle boarding and surfing over the early/mid part of the summer, then the same trips with just Jared as the year grew old, the water became too cold and the nights became darker. The rest of the year was full of stress and uncertainty, Ethan’s A-Levels, the anxiety of waiting for results to get into Uni, then the build up of actually leaving home and the first semester. My ASW clinical and response driving courses, whilst they ultimately got me to where I want to be and I’m in a job I love where I feel like I really help people, were stressful, tiring and meant that we didn’t get a holiday over the summer. The anxiety during those courses brought back old feeling of worry that I struggled to rationalise. It also makes me sad that I didn’t get as much chance to spend time with Ethan during his last summer before heading to University. I guess perhaps some years are just a stepping stone and I feel that 2023 was very much this, a necessary right of passage which will lead us into better things, maybe it’s been a springboard. I think for now and going into 2024, we need to take some time to settle into new things, I’m very change weary and I think things need to stay as they are for the next year or two. I feel like I’ve done a good job having started and progressing in a new career, but I need to stay where I am now, at least for a while. We also need a damn good holiday!
It’s hard to sum up 2023 in any other way than to say it often felt like a necessary long dark tunnel where things just had to happen to set us up for the future. I’m glad it’s almost over, and from where I’m standing 2024 looks a lot brighter and more settled. See you all there!
“I’m sorry, I’ve got breast cancer” That’s how it started, I remember the phone call very well. I remember being stood in the kitchen and I remember Jared playing with Playdough on a big blue mat in the living room as I walked in and solemnly nodded to her Dad. Things changed forever that day and I was never the same after that phone call.
That’s what I want to talk about in this post, I want to be selfish, I want to say some things that I’ve never said before, please don’t judge me for it. I want to say that it affected me, it made me ill, mentally, physically sometimes. Beth’s cancer impacted on me, as it does on many partners who suffer in the black hole that is their own head, getting sucked further and further in, afraid to say anything, needing to be strong, needing to be positive. Being forgotten about, being left on one side, not being treated and not being looked after. Slowly loosing weight, not eating, feeling sick and in turn not wanted to eat. It’s a cycle, for me a nine week cycle. It’s perpetual, it’s infinite. Cancer and it’s treatment doesn’t just affect those with the diagnosis, it affects those who surround them, and in many cases the damage is unrepairable. I’m not sure I’ll ever be repaired, I’m not sure I can be, I’m not sure sure I want to be. The scares and damage have made me stronger and given me determination and fight that I didn’t have before. I’m more emotional, but I’ve become hard. I take that as a positive.
So what’s it really feel like? A song by band of horses called ‘The funeral’ kind of some it up for me, the lyric ‘At every occasion I’ll be ready for the funeral’. Whilst that song is ultimately about anxiety it has another meaning for me. Whenever we did something nice, every family occasion, every amazing holiday, every day out, every night out for drinks, I knew deep down that this was finite, it was going to end, much sooner than it should, and that it was going to end in a funeral. No matter how much I told Beth things would all work out, that she would be fine, that her cancer was showing no signs of progression, that we could make long term plans, I knew. I kept it inside, buried deep. Yes, at every occasion I was ready for the funeral. The thing is, no matter how deep you burry that feeling, it’s always there, I know that now.
Let’s talk about the nine week cycle that I mentioned, this perpetual cycle. Beth was scanned every nine weeks.
Week 1 day one – scan results day a feeling of elation like you’ve never felt when the nurse tells you that the results came back stating ‘No disease present’. The rest of the day was amazing, a time for celebration even though Beth was having chemo that day. It was always a Friday and Fridays were chemo days, at least they were for four years. I felt on top of the world, like I could do anything, like we were winning, the rest of the week felt much the same. A few mid week beers or wines and a feeling that things were normal.
Weeks two and three – Things normalise and life continues with very little worry I go about life.
Weeks three and four – A feeling that time is starting to run out, that the next scan will almost be upon us. A feeling of dread comes and goes, I remember very clearly walking through the Hull Uni campus and this feeling coming upon me and trying to bury it, telling myself it’s only week three and to concentrate on now.
Week five and six – I know it’s almost here, Beth is worried and analysing every little thing, every ache every twinge. I spend a lot of time telling her it will all be fine and to stop worrying. It’s now that I start with the sick feeling. It doesn’t subside, ever. The only time it isn’t there is as soon as I wake up in the morning, it returns within five or ten minutes. I don’t want to eat, I skip lunch most days and this only makes the sickness worse, but there’s nothing you can do about it.
Week 7 – The scan is coming on Friday, I think about little else. I continue to reassure Beth, I tell her I’m not worried at all, there is no need to be. I worry now that she thought I didn’t care, but that’s what she wanted and needed to hear. Me worrying only made her worse, far worse!
Week 8 – Starts with scan day! I would watch for the ticks to turn blue so that I knew Beth was out of the scan, and sit at my desk feeling ill whilst I saw the word ‘typing…’ It was done, Beth’s question was always, if I thought they would have said there and then if it looks really bad. My response was always ‘Yes!’ I had no clue if that was true, I just knew that we had to wait for the results, usually two weeks. For the night of the scan, the sickness was far less, there was a feeling of ‘at least it’s done’. It always returned with a vengeance the following day. We were now just waiting.
Week nine – Sickness, feeling worried, feeling stress. Feeling tired of hiding it, it’s exhausting. Reassurance, constant reassurance and lots of cuddles. I hated week nine, it was torture. Week nine ended in elation just as week 1 started.
It’s a cycle, a never ending cycle.
Now let’s talk a little bit about that feeling of elation, and something that prompted me to write this post. I was watching an episode of ‘The good doctor’ (I’d recommend that series, it’s good). Someone was given the news that their scan result for their cancer was good, that it wasn’t there anymore. I was taken back to a place I wasn’t quite prepared to go back to, not right then anyway. But I felt the feeling, I felt the elation for the characters. What I didn’t expect, is what that feeling felt like. It wasn’t elation as I remembered it and in that moment I didn’t feel like I do now. I didn’t feel excited about the future. I still felt a deep sensation of worry, only that it was just pushed away a little. It was relief that Beth could relax and that the questions would stop for a while. But even though it felt like it at the time, elation it wasn’t. It was just part of the cycle and I knew the worry would soon be back. At the time though, it was as good as it got, and I’d take that.
Over two and a half years since Beth passed now and I have relatively frequent contact with people in the same situation that I was in. I take them from hospital to hospice with their partner, I take them home to watch their partner pass. I have empathy that most people can’t have. Sometimes it’s right to tell my story and sometimes it helps someone to know that life goes on and that they will survive. Sometimes it works to have a laugh and a joke, sometimes I just need to listen, sometimes there are no words. Ultimately, my experiences have impacted me and changed me immeasurably. I wish I had help though things when they were happening and I wish I knew how much help I needed. But, if I told Beth I needed help and was worried about her it would have only heightened her own worry, which was bad enough anyway. I wish at every occasion I hadn’t been ready for the funeral, that came, it was traumatic, but I coped. I didn’t need to think about the end before it was time.
A lot of my worry was about how I/we would deal or cope with things if it got worse. I often used the term ‘don’t borrow worry’. What I meant by that was not to worry about something that you didn’t know for certain was going to happen, wait until you know and worry about it then. I wish I could have listened to my own advice because we dealt with everything as it came along anyway, you have no choice. All the worry and stress of the past played no part in that coping, it was absolutely borrowed.
So to finish off, if I can pass anything onto those in a similar situation, it would be not to borrow worry, get help and speak to someone even if you don’t think you need to, let them be the judge of that. Take care of yourself, eat properly even when you feel sick. Know that you are not alone and that others have tread the path before you. But most importantly, no matter how hard it may feel right now, you will cope, it will always feel hard, but you will feel better and you will laugh again. I did.
No one wants to be on their own, not really. I think some people say they’re happier that way because it makes them feel better, they have to kind of justify it to themselves. None of us are supposed to be on our own, not really, it’s just nature. I might be wrong though. I’m not happy being on my own, I’m not going to lie to anyone, I hate it, it’s painful. I miss that special someone to just be there for, I miss someone to tell the little things to or talk to them about. Things that matter to no one else but the two of you. The fox you saw on the drive to work, the owl sat on the fence post during a night shift, the first time you saw the daffodils sprout in late January, the comment that was so ironic but only the two of you know why. The unexpected influx of robins along a path at a theme park that felt so significant at the time. I miss dropping the boys off at music and going for a cheeky couple of pints together before picking them back up. I miss us smashing wine glasses by kicking them off the coffee table and not caring, I miss it suddenly being 7:00 am and wondering where the night went. I miss someone to cuddle in bed and I miss someone to bring tea and toast up to on a hungover Sunday morning. It’s grim, let’s not pretend it isn’t.
I also find myself in somewhat of a strange position, I’m relatively young (ish) and I’m not single because I chose to be, or didn’t find anyone. I’m not single because I had huge arguments with someone, or that I stopped loving anyone. No one cheated on me and I, well, I didn’t cheat on anyone else. I’m not single because we just drifted apart or I always put work first. I’m single, just because that’s what happened and circumstances made it that way. I’m not good on my own, I’m not good mentally on my own, I really aren’t, I never have been.
At first, you don’t want anyone else anyway and it was a kind of challenge, a challenge to continue to bring up two wonderful boys and give them the best life I could, to keep them healthy, fit, on the right track and as happy as they could be following what they went through, and in this world we live in today. Let’s be honest, the latter isn’t easy for anyone right now. Certainly for the first year, this was absolutely enough, running entirely on adrenaline really, there was little time to think about anything else. We got new interests, we made new memories, we had some great times, but as time went on and the boys got more independent, I wanted someone else to share things with.
So, I find myself with no one right now, it’s Valentine’s Day and I hate it. No one to be with, to care for and no one have my back, no one except me that is. This all sounds awfully self indulgent, but it really isn’t. So where do you turn in this day and age, how do you go about meeting anyone new? Well, there’s online dating, but I’ve grown to loath that! Swiping left or right through filtered photos, chatting to someone online for a bit, then meeting up, only to find that although they’re a nice enough person, you feel no spark, no fire and no burning desire to go out again. So you don’t message them anymore, you feel bad, you feel horrible, but it’s the easiest way out. I’m done with online dating, it’s not for me, and it gives me RSI in my thumb!
So where do we go from here? Perhaps through some random event I’ll meet someone new? I find that unlikely, but you never know. I’m not alone in this, I know that, thats how the likes of tinder or bumble make their money. It doesn’t really make things easier though. I wish all those others out there well in their quest to find love and maybe, at some point I’ll bring tea, toast and paracetamol back up to bed on a Sunday morning.
Until then, I’ll continue to dance on my own. Happy Valentine’s Day!
One thing that sticks in my mind was people talking about all being in the same storm but not in the same boat, this resonated with me many times over the months to come and on more than one occasion, I felt like my boat was about to sink. The lockdown for us as a family, felt very different to others I think. Most people worked from home, sat in the sun, ate too much and drank even more! Our story isn’t really like that, although I did end up with an amazing sun tan that year! My mental health definitely took a battering, something that I didn’t even realise until maybe a year later, or perhaps it was something I choose to ignore. I know now that I should have seen or spoken to a doctor and I think some sort of medication would have helped me deal with everything that was going on for us at that time. I was in counselling already, but that was doing little good because I refused to talk or think about the real issue. The fact that Beth had cancer, I had worried for years and now it had spread to her brain, I was terrified of loosing her. If I didn’t say it, it wasn’t real. It was, and I should have talked about it.
Beth finished full brain radiotherapy just before Christmas 2019, by 23rd March when the lockdown began, she had gained back the use of her arm and hand and was once again able to go about her life almost normally, she was still taking steroids but these had been reduced and we were quite positive. She had been having seizures, but these were few and far between and managed by medication. Knowing what I know now, I’m not sure the medication could have ever stopped them and they just kept increasing that following each episode.
The first day of the lockdown was sunny and felt warm, It felt strange knowing that you were just going to stay at home all day, it felt like there was no pressure, and no rush to anything. Beth and the boys were excited about the PE with Jo Wicks that he started on YouTube. I on the other hand got in a massive mood and refused to do. It seemed really petty at the time and Beth got annoyed with me. The real reason I didn’t want to do it was because I was so worried about her doing too much and having another seizure, I just wanted it to be turned off! It made me sad and it stirred up an anger inside me which I hated, why her? Why us? I went and read a book in the conservatory and let them get on with it. I hated Jo Wicks’ PE through that lock down because Beth’s ability to do it gradually decreased. It was like a daily measure of the progression of her cancer and it felt like torture.
Later on in the day, felt a little better. We set up a badminton court in the garden and we had some matches. It was sunny and warm. I remember Beth cooking dinner whilst we played, things didn’t feel bad, maybe we would get through this, it was only for a couple of weeks after all. Looking back to that sunny day, it’s upsetting to know that it would go on far longer, what was coming for us and that only three of us would see the true end of the lockdown.
Those were the earliest days, but as things went on we started to make our little routines and traditions, we read books and Ethan and I got really into doing jigsaws, something neither of us can now bring ourselves to do, it was a distraction from what was going on, a distraction from Beth’s mobility getting worse, a distraction from her tiredness and naps and an increasing number of seizures. I don’t think either of us want to go back there. Jared played ‘Fortnite’ with his friends all afternoon most days, we got cross with him, but it was his escape, his distraction from what was going on, he was not seeing the seizures, the mobility issues and the tiredness. His way of escaping the fact that he was loosing his Mum a little more each day. If you mention it now he gets upset about playing so much, I tell him is doesn’t matter. I couldn’t escape and I stayed strong for Beth, it was hard, it was killing me inside, I felt sick all the time, and I felt angry all the time. I felt angry that my friend and his wife were going running everyday and then spending the nights getting pissed in the garden, I felt angry with just about everyone and everything, I also felt angry with Beth, I’ve never admitted that to anyone, and that killed me more that anything, it wasn’t her fault and she didn’t deserve it. I would speak to my Dad every day often more than once, I would say I was fine, I was just bored. I wasn’t fine, not at all.
Durning the lockdown, you were allowed to go out for a thirty minute walk each day, this should have been something I looked forward to, but even in the sunny weather I hated it, I just wanted to get back to the house. I was terrified that Beth would have a seizure whilst we were out, I was often moody and miserable and didn’t join in with Beth and the boys with little games or traditions we made, this now makes me sad, I should have, it would have been nicer for Beth. I regret how I was on some of those little walks, they weren’t even very far and Beth never had a seizure on any of them, I was just so scared and I hated seeing her start to struggle with walking! The last little walk we ever went on though was good, she took her walker and we sat on the grass by the river eating an icecream, we took a photo of the four of us. That was a nice, and although Beth really struggled to walk back to the house we all enjoyed it. I look back on that little walk and smile.
On the evenings Beth and I watched a number of TV series, I looked forward to this because it felt like old times. We usually started watching early because she got tired quickly and went to bed. We watched ‘Outerbanks’ ‘lock and key’ and ‘atypical’ they were all really good and we talked about how excited we were to watch the new series when they were released. Of course Beth never made it to the new release dates and all this time on, I have never been able to bring myself to watch them, I couldn’t watch them without Beth, It was our thing it just doesn’t seem right.
I guess I’ve sounded quite negative up to now, but it wasn’t all like that. The one thing the lockdown gave us was time, time on our own and time to think, often too much time to think. It’s strange that the last times we spent as a family at home were through such a strange period, but I’ll be forever grateful for that. I didn’t have to worry about going to work since I didn’t have a job and I never worked at home through the lockdown like everyone else did. We read, we chatted, we sat in the conservatory, I sat in the garden for hours, Beth napped, we drew pictures and Beth created artwork in her colouring books until she was no longer able to control the pens or the colouring brought on seizures. Many of the images remain unfinished today, but are a reminder of where she got to, I like that. They were her pen strokes and something to hold onto. There were other little traditions and routines that we made, I had coffee with a muffin and shortbread every morning sat outside at around 10:30, Beth and the boys would always have chocolate mid afternoon, Beth would always have strawberries and cherries late afternoon, seven strawberries and twelve cherries. I would always have a pint made of one beer and one none alcohol beer at 4pm. I didn’t drink through the lockdown other than that, Beth was too ill and I needed to be sober. I didn’t drink for around three months. Not like me! I bought Zelda – Breath of the wild for the Nintendo and played that almost every night once Beth had gone to bed. I played until she woke up a couple of hours later and needed help in one way or another. I loved that game, it was such and escape. I can’t bring Myself to play it now though.
On 6th July 2020, Beth was admitted to the Queen’s Centre at Castle Hill Hospital, because she had been having almost constant mini seizures in her arms and face all day. Whist we didn’t realise it at the time, she would never return home. After three weeks of special visiting rights through the pandemic, Beth was transferred to Dove House Hospice, I made that journey in the ambulance with her. A journey that set me on track to what I now do as a job, a journey I have now made on the other side. It’s strange to think of Beth’s name coming up as a job on the pda. I know exactly what it would have looked like and the terms they would have used in the notes, three letters tagged on the end ‘EOL’, although it would be twelve weeks until we lost Beth.
So that was lockdown for us, a strange period full of emotion. A time I will always remember, I’ll always smile, but I’ll always feel sad too. By the time we came out of lockdown, four had become three, we had lost a corner of our square, but I told the boys that we were now a triangle, and that triangles were the strongest structure there is. I was not wrong
I’ve never worked nights before but my switch over to Yorkshire Ambulance and my new job on discharge means that I have to, there aren’t loads, seven nights over two weeks in a seven week roto. After my first couple of weeks, it’s hard to say what I feel about them, but here goes.
It’s a strange world the exists in a realm I’ve never experienced before. There is a sense of freedom where everything feels more open and things feel more clear, everything feels sharp. When it’s wet everything sparkles in the artificial light from the streetlights, headlights and shop windows. The blue lights of emergency vehicles, are far more vibrant, almost blinding, lighting up the wetness with a sea of blue.
At the same time there is too much time to think, what was, what is, what you hoped and what can never be. I’ve smiled, laughed and also had tears running down my face while driving this last week. There is no traffic, no noise and less hassle. There is a sense of feeling more alive than anyone else, and a strange sense of pride because you are out there doing what needs to be done whilst the world sleeps. The people in the hospitals are different, nicer maybe. There is a different feel, a kind of ‘We’re all in it together’ feel. You don’t get that in the day. I like that, it’s kind of like being part of a club. A club that, for all they feel, are never really fully awake and never really fully asleep. For me there’s always a sense of running on adrenaline, that feeling when you’ve had a great night out and never feel quite right the day after. The days only full of partial sleep in a light room in a subconscious reality that is neither sleep or awake. I hate that. I hate waking up and it getting dark an hour later, I hate having a roast dinner for breakfast. I hate the fact that’s its past midnight now I don’t even know if I’m tired or awake. What I do like though, is waking my two boys up when I get in from work, that’s a strange thing to do, their adventures are beginning whilst mine are drawing to a close, and even though they are getting older, and moan it’s too early, their faces bring light into the dark just before the sunrise.
The thing about all of it though, and I said it in my last post. I absolutely love my job, I’m proud to go out there and wear the uniform day or night and I’m proud to help people. It’s certainly strange being a day sleeper but I’m kind of proud to be part of the club.
It’s almost three years since my last blog post and I’ve wanted to post again for some time, but it’s been hard to know where or how to start. Anything new certainly needs some context and my life has changed immeasurably in that time. Its been a tough three years and I’m certainly not the same person I was then. So, here is the context and the background, or at least I hope it helps.
My wife was a cancer patient, she was a cancer patient for eight years and everything I blogged about happened whilst this was going on. We told very few people, we got on with our lives and enjoyed our time together as a family, as most people do. We traveled, we had fun, we rode rollercoasters, all whilst she was on weekly chemotherapy. I went to work and I wrote about some of that here. Just before I wrote my post titled ‘ghosts in the library’ my wife’s cancer had progressed to her brain. Although we stayed positive, never asked questions and hoped things could be cured, I know now that from this point they only gave her six months. She never wanted to know. She was a hero and although she would disagree, the bravest person I will ever know.
Following my redundancy from the University, covid-19 hit and any hope of getting a new job vanished over night. The UK locked down and through that period Beth’s health and mobility became steadily worse. Maybe I’ll write about what lockdown was really like for us someday, it will probably be good for my mental health to do so.
Beth passed away in Dove House Hospice in Hull in 28th September 2020, I’ll never forget the call I received telling me I needed to get there quickly and I’ll never forget them telling me I didn’t make it on time. I’ll never forget calling my Dad from my car outside, but now that phone call feels like it was before I went in, it wasn’t. I’ll never forget telling my boys their Mum had died outside school when I picked them up and I’ll never forget how my then 11 year old broke down and sat on the grass. We ate fish and chips that night, I had to go and buy vinegar from the local shop. It’s ridiculous how vivid that afternoon is. I’ll never forget walking around Asda in a complete daze, consumed by a feeling that I just didn’t understand. Loosing Beth didn’t feel anything like I’d imagined it would. I’m not sure its supposed to. In fact, nothing going forward felt like I expected it would. I know it went on for a long time and I don’t want to feel like that ever again. It was like living in a fog, you came out of it from time to time, but then it consumed you again. This went on for months. The stages of grief is a complete fabrication, it’s not linear at all, don’t listen to anyone who tells you it is. I felt far worse after after three months than I did after three weeks. The thing is, to start with, I only remembered Beth as she was when she was ill, but three months on I remembered everything else and that hit me like a brick wall, I was not ready for that. Looking back that time feels very surreal, the boys were not at school and we could not see anyone because of the lockdown. This, I think was actually good for us. It would have been very easy to distract ourselves with days and weekends away doing fun things, but instead we had to stay at home and deal with the enormity of what happened, head on, the three of us, alone, within our four walls. And we did. The TV shows we watched, the music we listened to, the video games we played, I look back with a strange fondness, but I can’t watch, listen to or play most of it now. It’s a time I never want to revisit.
So what of work? After caring for Beth and spending so much time in hospitals, I really started to like the idea of helping others and giving back some of what we had experienced over the past eight years. Whilst Beth was in Dove House I told her that I was going to change my career and go into nursing. She told me that I would be good at it and that I should go and do it. I applied for a number of healthcare assistant jobs but heard nothing back. I didn’t really have a lot of direct experience and Covid-19 prevented me from volunteering anywhere following Beth’s death. I thought more about what and who had an impact on us and how that had helped, one thing that came back time and time again, were the guys in the ambulance service. Whenever they came to pick us up, be it on blue lights or for a transfer, they made me feel at ease and took the stress and worry of caring for Beth away from me, for the time we were in their care. If I could do that for others, then what better job to be in. I originally thought it was out of reach for me, but two years later I am half of a two man discharge crew working for Yorkshire Ambulance. It turns out I’m pretty good at it. Along with some specific clinical training, all of my experience in user centered design, coaching, mentoring and customer service is very transferable. Also everything I went through with Beth certainly helps me understand how our patients and their families feel. I absolutely love the job and I’m proud to go out there, help people and wear the uniform day or night. I really hope that Beth would be proud of me, I think she would. It’s the best move I ever made and I’m so glad that I left the University. There is absolutely no comparison when it comes to enjoyment and job satisfaction, it really isn’t like working at all. I have met and worked with some amazing people and I go home at the end of every twelve hour shift, knowing that I’ve help others and made a difference to their lives, what more can you wish for?
Now two years two months after we lost Beth, where am I now? I’m certainly a very different person and I wish Beth could have known the guy I’ve become, I think she would like him. People talk about moving on following loosing your partner. I’m not sure that’s a fair way of putting it, you don’t just move on. There are things that you come to terms with and accept though, Beth and I had a wonderful time together and we made two wonderful boys. I’ve kind of compartmentalised that and like it for what it was, I’ve accepted that I lost Beth and I’m getting on well. It’s hard being a single parent and I absolutely hate being on my own, but for the most I’m okay. One thing I’ll never get over though, is the trauma that we all went through, the four of us, it was awful and I would never wish that on anyone. I don’t think the boys and I would have got through the last two years without family and friends, both new and old. They have absolutely been instrumental in my survival. They have taught me that its okay to have fun, and I’ve definitely had that over the past year, to feel again and that its possible to love again.
So that’s the context and a new springboard from which to start blogging. For the first time in many years, I’m quite excited to go into a new year. I have many hopes, both career wise and personal. I’m scared to hope too much, but It’s nice to see a road ahead, even though it may need clearing a little.
Carl Barrow (@carlbarrow) 