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.

That was the week that was

I hesitated before writing this.  Who wants to read that I’m struggling?  Who am I to think anyone would want to know?  People have got their own stuff going on and don’t need to hear mine.  Yet here I am, opening up a bit.  Because I must.  I’ll only get worse if I don’t.

Just over a week ago, I found myself crying tears of shame in A&E after a panic attack.  Relieved to discover it wasn’t the heart attack I’d self-diagnosed; ashamed that I couldn’t cope with life.  Yesterday, I was going to go out for a coffee, just to get out in the sunshine.  I got dressed and ready, then I hesitated.  I questioned myself.  Where am I going to go?  I won’t be meeting anyone.  I’ll be on my own again.  I can do that at home.  So, with my self-confidence beaten, I got changed again, into kit I wear around the house, and didn’t go out.

I’ve been here before.  For me, this leads to depression, even agoraphobia.  I don’t want to go back there again.  It’s a terrible place to be.

Long time readers will know that I’ve been fighting for years with anxiety and periods of depression.  Since Trisha died, I’ve been concentrating on practical things and not dealing with the loss.  I’m lucky that I can rationalise my way through daily life but that comes at a cost.  My body is showing symptoms and I need to let my emotions catch up.

If you’re expecting a coherent explanation of how I feel, I can’t give you one.  I don’t have one for myself.  My inner monologue describes snippets of feelings to me but that description has no real meaning, no flow to it.  If this is grief manifesting itself, then it’s true that it has no linear path; it’s more of a scribble that meanders its own way, in its own time.  I need to start making sense of what happened, not just when Trisha died but over the whole course of her illness.  That means talking to someone.  That means reaching out and admitting that I can’t deal with everything.  I don’t have unlimited reserves of strength.  I’m not superhuman.  I never was.

If I’ve learnt one thing dealing with this – and I’ve probably learnt only one thing – it’s that ignoring these feelings won’t make them go away.  Help is there.  If you’re struggling, please talk to someone – anyone.  Don’t hide away and think that you don’t deserve to be heard, to be helped.  You do deserve it.  You are worth someone’s time.  Please go and find the help you need.

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.

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.