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.

Brief encounter

Friday afternoon.  Newcastle….again.

I’m standing by the lift near the shops in Eldon Garden because I can’t be arsed walking the five flights of stairs to the ninth floor to shove my shopping in the car.  I’m immediately joined by two women, one walking a dog wearing a harness that indicated that s/he was an assistance dog of some kind.  I smile at the dog because s/he reminded me that Trisha loved dogs and wanted us to get one (I didn’t want to be caring for two, so I always prevaricated to avoid actually saying no.  Selfish, eh?).

Her companion, driving an electric wheelchair, caught my eye.  She smiled at me.  Not directly at me because her posture was compromised, her head was tilted and she hunched slightly to one side.  Instantly, she reminded me of Trisha.  Trisha would smile this same smile; a smile that was not only very sincere but also appeared to be of someone not entirely of this time and place, a naive, child-like, vulnerable smile.  Yes folks, today, Grief shoved its stiletto blade back into my chest.  My heart broke.  Rather than have to explain my wobbly lip, I excused myself and let the women have the lift to themselves.

Up until today, I’d not experienced the ‘ambushed out of nowhere’ grief that I’ve heard other widow/ers speak about.  To add to this, everything I heard or read following this chance meeting seems to have been designed to make me cry.  Alright, I am reading Adam Golightly’s book about his journey through grief but I’ve been strong enough to read it with good-humoured recognition rather than inconsolable howling.  Till now.  Every word twists the blade while I’m having lunch at my Friday haunt.  OK, I’ll listen to music instead.  Shuffle:  Make You Feel My Love (I could offer you a warm embrace, to make you feel my love)…*skip*… Sing To The Moon (Hey there, you, shattered in a thousand pieces, weeping in the darkest night)…*stop*

You sneaky bastard, Grief.  I hate you.

The feels

This is a big week for me.  I’ll be alone in my own home for the first time since Trisha died.  For the last six months, I’ve either had my mother-in-law or my own mother living with me, or both at once.  Last September, Trisha’s mother came to stay here with Trisha while I was due to go to the wedding of my best mate at school.  She’d only been here a few days when Trisha stopped being able to swallow properly.  I assumed – hoped – it would be transient, just a blip, and she’d be sent home again.  The rest is very recent and raw history.

Once we’d been told that Trisha wouldn’t recover this time, my mother came over to join Trisha’s.  I’ve not been alone since.  Tomorrow, my mother goes home.  I think this will be the time when those feelings of grief I’ve been keeping at bay will surface.  I only seem to let it all get to me when I’m alone.  Why is that?  Do I need to give myself permission  How repressed am I?  Don’t answer that, I’m way ahead of you.

Anyhow, I also think this is something that needs to happen.  I can’t keep focussing on the practical things in life to the detriment of my emotional well-being.  It’s time to let the feels in.

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 downside of spending twenty four hours a day, seven days a week with someone is the yawning chasm they leave when they’re gone.  It’s very difficult, if not impossible, to fill it.  When your social system has gone, for one reason or another, what do you do?  Can you get one from Amazon?  Does it qualify for Prime?

I’ve been able to do things since losing Trisha that I wouldn’t have been able to do whilst she was still here.  Things others take for granted, going to watch sports, just having an afternoon out for lunch (sorry to be a pain, Fenwicks, but your chicken salads meet my dietary preferences).

The freedom is all well and good but I’m still doing it all on my own, and it’s hard going.  I can open up here but I find it really difficult to just strike up a conversation.  Even more so because I have this huge thing that colours everything I do, everything I feel.  So, if you see a middle aged bloke looking like he’s trying to fit in but doesn’t quite manage it.  He’s not weird, he’s just lost his wife – his life – and is trying to find some way back into the world the rest of you are living in.  Go easy on him.

Yesterday would have been our wedding anniversary.  I remember, right from when we first got together, things being very stressful – especially her divorce and my court case.  Trisha would say to me that all she wanted was for me to hold her and tell her it was all going to be OK.  Which I did.  Then and many times during our years together.

Right now, I’d like to be held and told that it’s all going to be OK.

Oh, well.

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.