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.

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.

It’s been four weeks since you had any food, yet I’m absolutely astonished by your resilience.  I don’t know how you still have the strength to open your eyes.

I can’t help but assume that this is going to be a long, drawn-out decline.  And I’m undecided whether this is a blessing or a curse.  I can’t let you go but I hate seeing you suffer.  We’re on your time now, sweetheart.  I’ll take as much time as you want to give me.

How can you smile when I talk to you?  I mean, I’m glad you do: it’s a sign that you’re comfortable, not in pain or distress.  Despite what’s happening to you, your body failing you, you can still manage to move your lips into a slight smile.  You’re not even fully conscious, yet you seem to understand what’s going on around you enough to react with a smile.  At least, I like to think it’s a smile.

I smile.  I smile at you, obviously. Only, mine is a weak smile.  Not the full lights-up-your-face smile that you’ve always had.  That you’re known for by everybody.

These days are a kind of limbo.  Is it an adjustment period?  Are you being this calm so we have time to process and prepare for what’s coming?  That might prompt questions of spirituality.  A spirituality I don’t have.

All my rationality tells me is that you’re comfortable, not in pain and not distressed.  That this bastard of a disease that’s robbed you of absolutely everything is giving you an easier time at the end.  It owes you that much.

Her name is…

For the last 6 years, I’ve only referred to my wife here as MW. My cack-handed way of trying to offer her some kind of protection. Safety in anonymity, that sort of thing.  Given the prognosis, I don’t think it’s fair to continue referring to her as MW. She deserves to be called by her name.

Her name is Trisha.  We met in York and we’ve been together for nearly 16 years. First, we saw each other on the sly, she was married.  Her relationship was violent but she said she felt stuck in it.  Once she’d made sure I meant what I said when I told her I wanted to be with her (it took a lot of telling but it was worth it), she left her husband (no small feat but it didn’t end up being the morass we’d both feared – it could have gone horribly badly) and we found a little flat above a hairdressers that was our home until about a year after she was diagnosed and she could no longer manage the stairs.

A couple of years before Trisha was diagnosed, we went on holiday.  A two-week Caribbean cruise that took in some of the areas that have been hit recently by Hurricanes Irma, José and Maria.  I remember Antigua most of all.  We’d been on a sightseeing tour of the island and we’d been taken to a market area afterwards. A stall was selling the brightest sun dresses and Trisha had her eye on a couple of them – one white, one yellow.  For some reason, I had all our cash on me (insert something about the patriarchy here).  Trisha wanted to buy these dresses and was explaining to the stall owner that her boyfriend was away taking photos of something or other.

I was enjoying looking out to sea and just generally feeling relaxed and content when I heard the stall owner shouting.  She was pretty bloody loud, but she wasn’t shouting in anger and I wasn’t expecting her to be shouting me, so I didn’t pay much attention.

“Simon! SIMON! SIMON, WHERE ARE YOU? TRISH NEEDS YOU!!”

Embarrassed (mostly because the owner probably thought I was some kind of control freak), I ran over and gave Trisha the wad of cash, apologising profusely.  She bought them both and still has them.  Even now, we smile together as we remember that holiday and the woman shouting, “TRISH NEEDS YOU!!”.  Funny how some words stick in your mind, and how they gain meaning as time goes on.