A year’s grief: felt and observed

It’s coming up to a year since Trisha died. I still have problems saying those words. They still catch in the throat as they make their way out, and part of my brain wants to force my mouth to change the words to something less direct; to use one of the popular euphemisms we often use to describe someone’s death: ‘since Trisha passed away’ or ‘since I lost her’. Each of those is technically true, but they lack the force of what hit me on 30th October 2017.

To me, grief feels imposing and, at times, insurmountable. It feels like eternity since I was able to put my arms around Trisha and feel her, still alive; since she was able to stimulate my actual senses and not just my memory. Yet, simultaneously, it’s only five minutes since I was in her hospice room, sitting at her bedside and stroking her hair in fits of grieving tears. I have to admit that I’m struggling with it.

The intervening months have been, to employ an overused phrase, a rollercoaster of emotions. Only this rollercoaster constantly shifts its shape. It’s mostly flat – which is me trying to keep busy with day-to-day life and ignore my feelings – but there are undulations of varying height and gradient, and I never have any warning of when I’m going to meet one. The highs are rare, but so very welcome. The lows are more common than I’d like or care to admit and can be pretty deep.

I’ve watched films, in particular those with characters who are widowed, that portray bereavement as a series of heavy sighs and benign smiles at the thought of their loved one. That doesn’t seem to be where I am. I’ve also read a load of books on grief, loss and significant life change. I’m searching for clues in other people’s experiences, so I can find the answer to my own problem.

I’m looking for the ‘right way’ to cope and to find out where I am on the Gantt chart of grief. I haven’t found either. It’s taken me this long to figure out that there is no ‘right way to grieve’, there is no linear progression for grief. Grief is a scribble that has a definite beginning point but has no discernable end. The only variables are the thickness, depth and intensity of the line.

I’m surrounded by Trisha’s things or reminders of her: her pillow, untouched since it came back from the hospice; her bag containing her hair dryer, hairbrushes and other stuff; her ashes, in the front room, are still in the funeral director’s bag they came in, only now they have just-shy-of-12 months’ worth of dust on them. They’ve all assumed sacred relic status.

I’ve started painting again. The thing is that every canvas is inspired by Trisha or by loss. I have photos of her all over the front room, I have a study of her that I painted years ago, there’s another painting with her in it…I’m starting to worry that this isn’t healthy. I think I’ve figured out why: I’m scared that I’ll forget her, or that the good memories that we had together are irretrievably tainted by the later memories where things aren’t so enjoyable. I don’t trust myself not to forget, and I couldn’t forgive myself if I did.

If you’ve read this blog for any length of time, you’ll have seen the post, ‘D-Notice on the D-Word’, about a friend who passed away due to MS. I started thinking then that Trisha’s MS would ultimately be too much for her, but I never thought that I’d be right. Rather, I hoped I’d be wrong. When the MS nurse told me that nothing more could be done, I still wasn’t prepared for the prospect of her dying. No matter what anyone said or demonstrated, seeing Trisha lying lifeless in a hospice bed – albeit free from pain and having received the best care she could have been given – was horrifying.

Trisha’s death has left an enormous hole in my life. She was diagnosed with MS three months after we were married and suffered with it for twelve years until she died. I wasn’t just her husband. I was her carer for the whole time. A role I didn’t apply for; I became Trisha’s carer because she needed help right from the onset of her symptoms. For twelve years, we spent practically all day, every day together, with few breaks. It’s not surprising that I feel lost now she’s gone. As C. S. Lewis wrote of his wife, H., in his book ‘A Grief Observed’: “Her absence is like the sky, spread over everything”.

In short: I miss her. And I’m lonely. This shouldn’t come as a surprise, but I can only now say it out loud.

I’ve recently re-discovered Dire Straits’ ‘Alchemy’ album, a throwback to my teenage years in the 80s when I listened to it on tape. Despite not having listened to it for years, one track now makes me cry when I hear it: Tunnel of Love. Particularly, the lyrics, “…Girl, it looks so pretty to me, like it always did. Like the Spanish City to me, when we were kids…”. It makes me feel like the character singing the song is reminiscing about a time when he and a girlfriend were younger and had everything ahead of them. Thinking of a life that could have been, but never was.

It makes me think of Trisha, every time. Back in the early days of our relationship, we’d look forward to a future together. One that included all the things that many families dream of: kids, own home, dog, stuff like that. All I can do now is think of the life that could have been for Trisha, for us as a couple, but never was. I still have the possibility of a future that Trisha can’t have. And that hurts, too. I feel guilty that I can do it and she can’t. I feel undeserving of the opportunity, and, connected to it, undeserving of help in coping (which, I’ve recently discovered, is why I don’t ask for help). Because I’m still here and she’s not.

Even though a year has gone by, I’m still in the early stages of grief. Maybe, when my most severe reaction is a heavy sigh and a benign smile when remembering good times with Trisha, it’ll feel like eternity since I was distraught at her bedside. And the sky that stretches over everything will be my future. Whilst everything still seems so unfair now, that’s a hope worth holding on to.

Never mind…the introspection

It’s been a while, hasn’t it? Last episode’s cliffhanger saw me in the aftermath of panic attack number 691, dashing to the A&E department of a local hospital, and not dealing with the loneliness and emotions that Trisha’s death has left me with. What’s been going on in the two months since? Well…

I’ve had a bit of a health scare. I found a lump where a bloke isn’t supposed to find extra lumps, which didn’t do wonders for my stress and anxiety. To tell you the truth, it sent me into orbit with worry. I started thinking that stress had manifested itself into a physical symptom. Just as I was beginning to think in terms of being able to start my life again, here was something serious that was going to curtail it all. Fuck my luck. Or some self-pitying shit like that.

I did the sensible thing and got it looked at. Nothing sinister. Or on the right. So, I can stop that nihilistic train of thought.

In other news, I’ve also started bereavement counselling sessions offered by the hospice where Trisha spent her final days. I’m half way through the sessions and I’m finding them to be a real help. When I first spoke with the counsellor on a one-to-one basis, I admitted to still being in a state of hyper-vigilance. I’m not overtly jumpy because I have a long-standing defence mechanism.

When people are confronted with someone who’s radiating anxiety, their initial reaction tends to be to withdraw from that person, so as not to be affected or have to deal with it. I don’t want people to withdraw from me, so I’ve learnt to mask how I feel, mainly because I don’t want to be judged negatively by anyone (this has been a thing with me since childhood, but I’ll not go into that just now), but, apparently, what I was saying to the counsellor showed signs of a high level of anxiety. Always on a hair trigger, waiting to react to some kind of threat.

However, over the past two or three weeks, I’ve noticed that I’ve changed a little. I’m less inclined to race from zero to 100 in terms of anxiety. I don’t know whether this is due to the sessions, the relief following my health scare or other parts of my life that are positive. This isn’t to say that my antennae don’t go off every now and then, but I’m not jumping at the slightest noise.

When Trisha was still here, I would constantly monitor everything for the slightest change: Trisha’s bodily reactions, my body, external sounds, even smells. The tiniest thing would trigger me. This change can only be a good thing, but, since I can’t yet put a finger on the reason why, I don’t know if it’s temporary or permanent.

Something else that’s come to light is my tendency to see everything I do as either perfect or shit. There’s no in between. There’s no OK. I constantly look for things within myself that I can improve to ensure that I appear ‘normal’ to the outside world (and make sure they don’t want to withdraw from me). All things to all people. Physically more attractive, more personable, better at this, able to do that. All the while thinking that I wasn’t good enough.

It was the same with caring for Trisha. Perfect or shit. Perfect meant she was still alive and well; the opposite meant…well…the opposite. I still struggle with this. I always assumed – wrongly, I realise now – that if I did my bit, if I did my best to provide Trisha with the care she needed, she’d stay alive and well. I saw it as being my job to keep her alive. As she worsened, I’d try harder, try to eliminate all my defects, as I saw them.

See where this is going? I tied myself in knots, emotionally, trying to achieve something that was impossible. I couldn’t have made a difference, no matter how hard I tried or what ‘improvements’ I made to myself. Even writing this last sentence doesn’t stop the little voice in me which tells me to look for the defect that led to Trisha dying, and improve it. I am trying to be a little more self-accepting.

This outlook is affecting how I’m looking at the future. For all intents and purposes, I have a blank canvas. But, because of the perfect/shit self-judgement, I’m scared of making errors – what if I move to a house I don’t like? Or an area I’m not happy living in. Do I return to study? What if I don’t like it? What if I pick the wrong subject? I know, I’m scared. I’m scared of failing and making an error. I’m working on it. I knew I needed some help and the counselling sessions have confirmed that. I still have three one-to-one sessions left and I can go to group sessions for the next year or so.

I’m also aware that the first anniversary of Trisha’s death is looming. In a couple of weeks, it’ll be a year since Trisha was taken into hospital with swallowing difficulties. I have no idea how this is going to go. I may feel like writing a little more over the coming weeks, I might want to withdraw. Either way, I will keep trying to better deal with things.

Belonging

“Three of these kids belong together, three of these kids are kinda the same. But one of these kids is doing his own thing, now it’s time to play our game…it’s time to play or game. Can you guess which kid is doing his own thing?”

I’m not one of the kids who belong together any more. When Trisha was still here, our ‘tribe’ shifted regularly for years, sometimes by our instigation, moving house/area, but mostly without us wanting it to. Now Trisha’s gone, I get the feeling my tribe is shifting again.

When Trisha was diagnosed, we were shifted out of our tribe. The wider group of people we associated with moved on as our lives diverged: we weren’t having children, we could no longer buy a house so house prices were nothing to do with us, we no longer had careers to tend. Our lives became run by MS and our topics of conversation were about medical tests, symptoms, treatments, care management, knowing the location of the nearest accessible toilet, wondering whether urine will come out of those trousers, the cost of dry cleaning, and so on. The good friends stayed but a lot shifted us along.

We shifted to people affected by MS, whether they be sufferers and their families/friends, carers, and so on. We’d go to MS Society branch lunches/coffee mornings in York, South Cumbria and the North East. Symptom sandwiches were washed down by a cup of shared care concerns and tales of embarrassing lapses in bodily control. As Trisha’s MS progressed, we’d have less in common again with the people going to branch events. It’s frightening to see someone deteriorate from the disease you have. Particularly when the statistics say that, one day, you’re likely to be in a similar position. When you’re the worst affected person in the room, as Trisha was, you know you don’t really fit any more.

Even with progressive diseases, you do come across people who are in a similar position to you. Your tribe becomes smaller but they’re there. You all get what it’s like to sleep with one ear and eye open. You all get frustrated by officialdom’s increasing lack of understanding for your challenging circumstances. You all share the same worries about the future that none of you have or can plan for. You all hate the state you’re in but fear the alternative. It’s a long and stressful tightrope to walk. I fell off.

When Trisha died, I stopped being a carer. When I talk to people who are still caring for loved ones with MS, I can sense a subtle shift in the dynamic. I’m not saying I’m being shifted, far from it, these people are dear to me. I’m just becoming very aware that my position has changed. Whilst I have the history of being a carer, I’ve moved from that to somewhere else. I’m the widower of an MS sufferer who died. It’s a completely different place. I no longer have to watch a loved one suffer, juggle the constant demands of being a spouse and carer or worry for the future of someone who depends on me entirely.

I’m free of those feelings now. Others have taken their place. I miss Trisha, I grieve the life we had, especially in the early days we were together, pre-MS. I even miss the later, crap years. It’d mean she’s still here. I’d still have a greater sense of certainty of who I am or, at least, what role I had. I guess my natural ‘tribe’ is different now. I’m not trying to replace those who’ve stuck with me throughout, I’m trying to add to them. I’m a widower without children: I have a new title, a new role in life, even though I don’t really know who I am. (As an aside, is it just me or, when you look at how the death of a spouse is covered in the media, does grief only really count when the couple have children? Is my grief as a non-parent somehow lesser than the grief of a widow/er with children? We’re people too, you know? We loved, we lost, we hurt. But I digress. Again.)

So, here I am, still figuring out where I sit in the grand scheme of things. The upside-down kid among the right way up kids.

Guilt

“There’s nothing you could have done.”

That was from the hospice consultant on the day Trisha died. In the long run, that may be true, but I still have my doubts. I can’t help but replay things over in my mind, wondering whether I could have made more of a difference. One particular example that springs to mind is from 2016. Trisha had begun to regurgitate food and had been referred for a barium swallow x-ray and other tests, followed by a conversation with a consultant gastroenterologist.

Actually doing the tests was a little difficult because of problems getting Trisha onto the scanning machinery (there’s a lot of accessibility work needs to be done for patients who have severe mobility difficulties and require certain types of examination; it’s not good enough to say ‘oh well, there’s nothing to be done’, but I digress…). I was still lifting Trisha in and out of the car, and occasionally on and off the bed, so I thought this would be the best course of action to get the tests done. It was a little more difficult because of having to reach her over to the bed part of the scanner, but we got there.

Anyway, tests done, we get to the subsequent chat with the consultant. A man in his 70s who’d retired but was doing some locum work to help the hospital out, a fact he reminded us of throughout the appointment. After seeing Trisha, his initial assessment was to insert a PEG tube at the hospital’s earliest opportunity. I think my face (and maybe Trisha’s too, I can’t remember) must have gone some way to getting him to change his mind. I knew what a PEG tube was and the idea of Trisha having to undergo surgery and have one of her few remaining pleasures – eating – taken away didn’t sit well with me. She was already losing so much, I didn’t want this to be taken from her as well.

Trisha said she wasn’t keen on having surgery or being fed through a tube. She liked being able to eat, too much to give it up unless she absolutely had to. I was relieved to hear her say that. The consultant looked at the test results again, which, bizarrely, given the symptoms, showed no or very little abnormality in swallow, and changed his mind, saying that he was happy for Trisha to manage with me helping her. We were to contact the hospital if Trisha decided to have a PEG tube inserted and she’d be treated as a priority patient. Looking back, I wonder if I was too short-sighted.

Should I have been more proactive? Should I have seen what was going to come? Ought I to have persuaded Trisha to have the PEG tube? It’s not that I didn’t try hard enough, I didn’t try to persuade her at all. I had the greatest influence on Trisha’s decisions. I was the one pointing out the pros and cons of everything. Given everything, would I have acted differently? If I knew then what I know now…

We all have moments like that. Crossroads where the path taken didn’t work out as hoped or has changed life for the worse, with varying degrees of severity. You wonder what the outcome of the other path would have been. I have loads of those too, but few of them have had such life altering – or life ending – consequences. Maybe there was nothing I could have done in the long term to stop Trisha’s MS from taking her. I have to trust the judgement of people better qualified to assess that. But it doesn’t stop me wondering and wishing, and feeling guilty.

The loneliest number

It was Trisha’s birthday over the weekend. The first birthday without her. I wanted to do something special to commemorate it. I took myself into Newcastle with a two-item to-do list. Light a candle and go the football.

After a galvanising coffee, I went to St Thomas the Martyr’s church and sought out the candles. Not through any kind of spirituality on my part, but I know Trisha would have done it, so I did the same. The commemorative candles stood on a rack in three rows. Next to the rack was a tree with requests for prayer in the name of the dearly departed tied to it. I felt a bit like a fish out of water already so I stuck to candle-lighting. I took a candle from the pile on the rack, left my contribution to the collection, placed the candle in the special three-pronged holder and struck the match.

I’d just about got it lit before the floodgates opened. Shoulders shaking, unable to move, even out of embarrassment. After some minutes, I find my way to a pew at the back of the church, only to realise I’d not brought anything for this pretty obvious eventuality. I know there’s a cafe in there but no idea if there’s a toilet. It’s no good, I’ll have to find someone to ask. I’m in an almost deserted church on a Saturday morning–definitely out of my comfort zone on both counts, sobbing while asking where the toilet is. A vision, I’m sure. Mind, I’m sure the people working there are accustomed to seeing similar things.

I can’t stand about here all day, dripping from various bits of my face. I said I’d take her to the football. Not literally, obviously. I’m not taking the bag with her jar of ashes in. That’d be a step too far, even for a grieving widower. But I’d be taking her, figuratively, to St. James’ Park, what with her being a NUFC fan. “That’s my granny’s doing. She was from Byker.” If she’d said that once, she said it hundreds of times. More so as her MS advanced and her memory and cognitive skills diminished. She’d have loved the atmosphere of the ground, even if the game itself left something to be desired. She’d have hated the cold, though. She always envied her brother because her birthday always coincided with bad weather, whilst his was in the spring and he could do more.

As her birthday wore on, I felt more lonely. I was doing all these things that had a special meaning but couldn’t tell anyone. I was aching to tell everyone but couldn’t just blurt it out of the blue. It’s not something that the Bumper Book of Making New Friends As A Widower recommends as an introduction to conversation. In fact, it ranks among its top ten list of don’t-whatever-you-bloody-do’s. I started to resent other people just getting on with their own Saturday. Which they were perfectly entitled to do. I guess it’s another sign that time is passing without her. And that it’s not fair. She should be here. Whether her condition allowed her to really enjoy anything like this is another matter. I’m thinking in purely selfish terms.

I miss her. I keep hearing her say “I do love you, Simon”. Not just a declaration in and of itself but also her way of acknowledging the situation and my role within it as her carer. A ‘thank you’ of sorts.

Throughout our time together, I never said goodnight to her. It was always ‘I love you’. Every night–especially at the hospice, every time I left her room for any length of time–I wanted to make sure that, if anything happened to her, the last words she heard me say were “I love you”.

They were the last words I ever said to her, “I love you with all my heart”. I’m still not ready to say goodnight to her. Or if I ever will be.

So this is Christmas.

So this is Christmas….and how are you getting on?

There’s a train of thought that says the grief that follows the death of a spouse should be kept personal. Which is a shorthand for the fact that a lot of people can’t or don’t want to deal with the feelings of the widowed (or bereaved, in general). Or they don’t want to hear that it’s not a clean, upward curve of ‘getting over it’ but a messy splodge of scrabbling around, trying to make sense of what’s happened whilst, at the same time, trying to find some idea of what your future’s going to be. But people keep asking.

The real meaning behind the question is like the real meaning of Christmas: it differs, depending on the individual. They range from “I’m genuinely interested and I’m ready for whatever reaction you have” via “I care and hope you’re not doing badly but please don’t break down because I have no idea what to say or do” to the rictus-grinned “I’m only being polite. I’m really looking to reinforce my own feelings and skirt over yours. Don’t you fucking dare bring me down”.

After years of fielding questions about Trisha’s health deteriorating, you quickly learn to spot which is which. Most people fall into the middle category, which I can understand. There are some notable and very much appreciated exceptions who come into the first category. The latter category is quite easy to deal with, barring the good actors who’ve had a bit of a shock but, frankly, they get what they deserve.

So, how am I getting on? Shit, really. I keep searching for ways to cope – reading books and watching films about bereaved spouses to see if there are any clues I can glean. Some are helpful, others offer an excuse for a good weep and a wallow (Mum’s List – Rafe Spall is very, very good). I know, I know – I don’t need an excuse beyond what’s happened. The films provide cover.

I’m not feeling festive. Trisha left 9 weeks ago on Christmas Day. She absolutely loved Christmas but it feels empty without her. I’m sure anyone who is experiencing or has experienced the first Christmas after bereavement has a similar feeling, even if it varies in intensity. I’ve put a few decorations up but it’s been a real effort. And if I hear Mud’s “Lonely This Christmas” one more time, I am going to let it all out and everyone will just have to cope with it.

I’m tired of the fake smile. I’m tired of trying to keep up in the jollity stakes. Being surrounded by TV and other media images of happy couples and smiling families is particularly hard when mine is shattered. Despite having my mother with me for the past couple of months, I still feel very, very lonely. It’s not easy continually holding back tears. Which probably explains the sleeplessness, panic attacks and periodic meltdowns. Luckily, they’ve only happened at home.

This is not to say that it’s all darkness and shite. I caught myself thinking about what kind of home I want to live in. I don’t mean the bricks and mortar, but what I’d put inside. What I’d put in differently from the furniture I have now. What kind of environment I’d be happy to call home. These are the first little bits of future-thought creeping into my head. Despite them being tiny chinks of bright in comparison with what I’ve written about Christmas, they’re a start. I’ll take that.

So this is Christmas, and this is how I’m getting on. Let’s hope the New Year’s easier. Than the one that’s just gone.

Loss.

I’m finding it hard to write this without making someone else’s grief about things here. I know it’s not right but I hope they’ll forgive me, and that anyone reading this will understand why I feel this way.

Last week, we said goodbye to a friend – S. S was only 32, and had fought MS for half her life. I know her family more than I knew her. They cared for her throughout her battle with progressive MS and were with her at the end. To say that her passing was a shock is an understatement. Like many diseases of this nature, MS didn’t provide the final blow. That was left to pneumonia – a dangerous threat on its own, without having a compromised immune system.

I saw S twice in the three weeks before her passing. First, when I took MW to look round a respite home, she was a resident for that particular week while her parents took a break. She was asleep in front of the TV in the home’s common room. She looked peaceful, relaxed, and rested. And well cared for. The home’s very good and seeing S so relaxed helped put MW’s mind at ease about staying there. That’s important for any respite break – but I digress.

The second time was the day before she left. In a hospital side room, in a scene that could have come from any TV show or film. Machinery, tubes, cables – I’m sure you’ve seen something similar, either on a screen or in real life. Her mother had told me a few days before that she was in hospital and was extremely poorly. We visited her while MW was in hospital for an appointment. Spent a little of what we now know was precious time with her. S had been given some glass butterflies. Her mother gave one to MW while S had another in her hand. They were linked. Like two wings of the same butterfly, I guess.

The MS that S battled was similar to that which MW has. She was the only person I know or know of in a similar position. I know what her family had to do on a daily basis. Which is why I wished with every fibre that S would recover. That life wouldn’t be so cruel to someone so young who didn’t deserve to leave so early, or to a family who shouldn’t have to face the prospect of losing a daughter or a sister in her prime. I also know that S didn’t deserve to suffer as she did, nor did her family who saw the effects every day. She’s no longer suffering or in pain.

I’m no altruist in this regard. It didn’t take long for her family to realise what was going to happen. But I wished and willed S to recover, partly for selfish reasons. Not to prolong any suffering but for reasons of hope. Because her passing plays on my fears of inevitability. Of a taboo subject and thoughts that we can’t – daren’t – articulate.

Meanwhile, we fondly remember a beautiful butterfly who has now spread her wings. And, if the music at her funeral is anything to go by, is head-banging to her heart’s content.