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.

The first rule.

The first rule of (Not Being A) Dad Club is that you never talk about (Not Being A) Dad Club.

Did you know it was Father’s Day this weekend?  Every shop you see has some Father’s Day angle or other. It’s on TV – adverts and programme spots -, in magazines, newspaper sites, all over social media. It’s everywhere. Tonight, MW said, apropos of not very much, that she’d like a child “even at 50”. Yeah, I’d have liked a family, too. It can’t happen though. And that hurts.

Long time readers here will know that my Dad died before MW was diagnosed with MS (Father’s Day is the same week as his birthday). MW’s Dad died earlier this year and we don’t have children. So, Father’s Day no longer applies in this house. It’s a closed shop – a club that I’m not a member of anymore. And won’t be. I might have written about this before and I might write about it again. Because it crops up every year, and I don’t remember what I’ve written before. And I’m not about to go trawling through to check.

One of the things that parenthood inspires is the thought of the future; that a) your family is continued, and b) gives you reason to look forward, with the assumption that you’ll have your children around you as you get older. That you won’t be alone in your advancing years – not necessarily from a practical perspective but from an emotional one. I can’t lie, the idea of being alone as I get older isn’t one I relish.

By alone, I mean absolutely alone. My mother is nearly 80 (don’t tell her I told you! She doesn’t know this exists.) and, as active as she is, I can’t assume that her health won’t deteriorate. I assume, as nature generally goes, I’ll outlive her. And the odds that MW and I will, at some point, no longer live in the same house seem to be getting shorter and shorter. I don’t begrudge others their happiness with their family. That’s not fair. I just feel wistful. Sad. Scared. Uncertain. A mind full of what if’s. And jealous. A real envy that my life has taken this path and not the one I’d set out for myself in my formative years. When I was actually thinking about the future and not busy obsessing over records or furiously obsessing over photos of Beatrice Dalle and Michelle Pfeiffer.

Actually, this time of obsession was the closest I’ve come to being a Dad. My first girlfriend unexpectedly fell pregnant and decided to have a termination. In the aftermath, I assumed that I’d have a family of my own “at the right time”. Obviously, I had no idea how things would pan out. I lost contact with her years ago but I do know that she went on to have a family of her own. I didn’t know whether to include this piece of information but I’ve written about it before, so I suppose there’s no real reason to leave it out. As I look back, I don’t really know what I’m supposed to feel about this now – shame? bitterness? regret? I don’t know. But it does hurt.

I guess it’s the same jealousy and wistfulness that seems to hit MW when she has a more responsive moment and says that she laments not being a mother. I used to think that Father’s Day card and gift buying was a bit of a bind. Because it coincided with his birthday, I’d have to do twice the spending. Our relationship wasn’t great (to massively understate the case), so I thought the cash could be better used on more exciting – and obsessive – stuff.

I get it now. I get what it’s supposed to be. It’s supposed to be a celebration of being part of a family. And the cards in the shops are a reminder of a club that I’ve joined against my will. (Not Being A) Dad Club. A reminder of a past that’s gone and a future that never will be. But if I have to be a member of this club, I’m bloody well going to talk about it. A bit.

Dear Dad, 

When I was
small, you held my hand.

When I was
growing up and needed you, you held my hand.

I left home
and started my own life, you were holding my hand.

When my
life took me further away from you and Mum, you were holding my hand. 

My life
changed, and I started afresh. There you were, holding my hand.

Time and
again, you led me around the Railway Museum…..by the hand!

When I got
ill and grew weaker, you were holding my hand.

Then.

Illness
came for you. So, I held your hand.

When distance
came between us, I held your hand.

As I heard
your voice on the phone, I held your hand.

When all I
can do is think of you, I’m holding your hand.

For the
rest of my life, Dad, I’ll hold your hand.

And I’ll
never let go.

I love
you.  Your daughter.

Milestones

This year has brought milestones into MW’s life.  She’s recently turned 50.  The day itself was fun.  Some friends came to visit and made her day and she had cake and balloons.  It was good for her – and for me – to have a house full of people and laughter.

MW hadn’t really had time to get used to being 50 when we learned that her father passed away the other week.  They’d not been able to see each other for over a year – MW can’t travel such a distance because her MS is too advanced, her Dad had leukaemia and had deteriorated significantly since we last saw him.  This meant that neither he nor MW’s Mum, his main carer, could come and see us.

It’s been a challenging time since we learned of his death.  MW has cognitive and memory issues, and I thought she’d need to be reminded what had happened.  There are moments where she seems to forget and others when it’s obvious that she’s thinking of him.  There’s a deep sadness in her demeanour, a real low mood.

Given that she couldn’t get to see him while he was still with us, she can’t get to today’s funeral.  Which is a mixed blessing, I suppose.  She can’t say goodbye to him but she’s not surrounded by reminders that he’s gone, which avoids provoking more low mood.

We’ve written something to be read out on her behalf, to make sure that she’s involved in a small way.

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.

We took MW to see her family again.  When I say ‘we’, I mean my Mum and I. It was MW’s Dad’s birthday while we were there.  He’s been fighting leukaemia for a while, now.  To tell you the truth, we’re surprised that his fight is still on-going.  We were given a prognosis for him that included a finite amount of time. Therefore, each celebration – birthday, Christmas, etc. – always carried the possibility of being his last.

This is not to say that MW didn’t enjoy seeing her Mum and brother, too.  She misses all of her family.  Her Mum does all the caring for her Dad, and can’t come to see us.

Although I may have said the same after the last visit, this may well be the last time we do this trip.  Five days’ of travelling and care with only the most basic of equipment have left their mark.  My Mum is in her late seventies and her health is deteriorating, too.  I can’t ask her to keep running around as my assistant whenever I get the urge to do this.

Also, I’m afraid that, as MW gets weaker and weaker, I won’t be able to lift her in the same way as I’ve been able to do.  As she’s losing core strength, I’m losing the ability to control each lift.  I don’t want there to be an accident that could be avoided.

It was good for them all to see each other.  There were a few tears, both on arrival and when leaving.  But, for five days, MW felt like she was part of her family again.  And I’m glad she did.