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.

Futility

“Medically futile”.  I’ve never heard two words that have cut through me more than those.  No matter how warmly they are delivered, they are the coldest of words to use in connection with a human being.  Particularly one you love.  I’ve heard them twice recently, in the same meeting.  Both instances regarding the use of artificial means of providing food or other nutrition to MW.

She will not be given a PEG tube – it would be “medically futile”, i.e., it won’t make any difference to the final outcome. Now she won’t be given a nasogastric tube for feeding, either.  Bizarrely, she’s already had one which she took to rather well but, for some reason, it came out.  They won’t put one back in.  It, too, would be “medically futile”.  She’s not taking food or fluid orally, she’s lost the ability to swallow.  And it all frustrates the hell out of me.

I used to be a civil servant.  We had an abbreviation that we applied to a case that cost more to work than its maximum forecasted result: NWFP – Not Worth Further Pursuit.  It feels like this has been written on MW’s file.  That she’s no longer worth the effort.  Rationally, looking at it with cold logic, I get it.  Emotionally, it can fuck off: she is infinitely more than a effort/benefit ratio.

People keep asking me how I am – the medics in that meeting, family, friends, neighbours.  They already know how I am.  Or can guess.  How am I?  I’m hurt.  Angry.  Frustrated.  Sad.  Empty.  Numb.  I am in mourning.  For an event that hasn’t happened yet but is going to.  Pre-grief grief.  A few days ago, half undressed and ready for the shower, I had a meltdown.  A full-on, hands and knees, snot and sobbing meltdown.  “I just want her back”.  Repeatedly.

Twelve years ago, just before MW was diagnosed, we were waiting for the results of her MRI scan.  Her vision was compromised and she was struggling to walk.  The options on the table regarding possible diagnosis were MS and a brain tumour.  I remember vividly the words of a colleague – an MS sufferer.  “If it’s MS, it’s not a death sentence.”  I know she was trying to reassure me that her experiences with MS proved that the disease wasn’t so much of a curb on her life.  That the alternative option was worse.  I know that she couldn’t know what was going to happen.  Maybe one day I can accept what she said at face value, but today is not that day.  Today, I’m bitter and resentful.  Today, to save MW, I could murder the world.

At times, I’ve wondered if me being frustrated while caring meant that I was cold.  No.  I was just stopping myself from feeling what I feel now.  Utterly helpless and desperate for things to go back to how they were.  Before, the frustration could be tamped down by doing something practical, to enable us to go on.  Now I can’t do that.  There is no going on.  There is no practical thing I can do to make things easier.  I can only watch, stupid and helpless, while this disease slowly and sadistically steals everything that’s left of MW.  I just want her back.