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.

So, I’m standing in Clinton’s, looking at all the cards with “To my special wife” and “To the one I love…”, while “All I Want For Christmas Is You” is playing.

I was *this* close to full meltdown.  I got away with a crack in my voice at the till.

Good grief

This is the first post after losing Trisha.  Seeing those words still causes that now-familiar sting in the eyes and knot in my stomach.  Three weeks on, I still don’t know whether and how much I should tell people.  Do I get my disclosure in first, just ‘out with it’? Or should I keep quiet and wait for people to ask why I’ve a face like The World’s Most Slapped Arse Ever™?  Do I wear my grief on my sleeve or not?

Is there such a thing as ‘good’ grief?  I mean, is there a ‘proper’ way to grieve?  I have no idea.  Logic tells me there is no proper way to grieve, only a personal way that’s peculiar to each individual going through the process.  (Is it just me or does ‘process’ seem like a very unseemly word to describe the sequence of emotions and experiences felt by the bereaved?  It’s something that’s too human to have such a logic-driven, robotic word attached to it.  Just thinking aloud.)  So, why am I thrashing about, trying to figure it all out?

I’ve started to search out all things grief-related.  Books, films, TV programmes, newspaper articles, websites, people on social media in similar circumstances….right now, I’d take runes and tea-leaf readings if I felt they’d help me find my way (I don’t, but as I get more desperate, watch this space).  I’ve become a grief addict.  Hell, I’m even watching Sleepless in Seattle as I write this.  I daresay I’m looking for answers.  The only answer I have for any aspect of life right now is “I don’t know”.

I don’t know where I want to live – as we live (live…lived, whatever…) in a rented bungalow specially adapted for people with disabilities; I can’t stay here, someone who’s been on a waiting list for goodness knows how long will need it.  I don’t know about Christmas, I don’t know what I want to do in life, I don’t even know who I am (I’m the Bourne Widower!).  For sixteen years, I was part of a whole.  Now, I’m a part that’s adrift.

I don’t have any answers.  I don’t even know what the right questions are.

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.

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 an 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.

What is a man?

What does it mean to be a man?  A pointed question.  One that’s likely provoked many an hour of chin-stroking in people far more learned than me.  It feels pertinent to me as a carer.  Whether other male carers feel the same, I can’t say.  I can only say that the question lodges itself in my head from time to time and provokes a good deal of self-analysis.

Recently, I found myself listening to Woman’s Hour on BBC Radio 4.  I’m not so narrow-minded as to assume “Ugh, women’s stuff – not for me.”, or that I couldn’t find it interesting, so I didn’t tune out.  After a few segments, the programme featured an interview with Jody Day.  Ms. Day has founded Gateway Women, and written a book, Rocking The Life Unexpected, both of which were inspired by her search for support whilst grieving at the realisation that she will never have children.  I listened to her story and how she described her feelings and experiences as a woman at the time her peers were becoming mothers.  She recalled feeling at odds with people around her, as though she was viewed with a little suspicion.  Perhaps she wasn’t fulfilling the stereotypical role of “woman as nurturer/carer”.  This caused my pointed question to lodge itself once again.

Ms. Day’s story touched a couple of raw nerves.  1. I am a carer.  2. I have no children and won’t be having any.

If a woman’s role in life is to be nurturer/carer (I don’t believe this to be true, by the way, but please bear with me for the sake of this post), then what role does a man have?  What’s the male stereotype?  Provider?  Hunter/gatherer?  And do I fulfil that role?  While I see this stereotype to be as outmoded as the idea of a woman’s sole role to be a nurturer/carer, it doesn’t stop me from questioning my place in the world.  A feeling similar to that described by Ms. Day.  I sometimes wonder how people view me because of what I do for MW.  I suppose it shouldn’t matter but it does.  It’s important to me to feel like I fit in somewhere.

I grew up in a shipbuilding area during the 70s/80s.  The “hunter/gatherer” stereotype was everywhere you looked; originating at home, and reinforced at school or with friends.  Add the same messages from the media and you have a powerful influence around you.  When I was a kid, I assumed this was the stereotype to follow.  When I began my working life (albeit not in industry) and started having relationships, I still assumed that I would be the ‘hunter/gatherer’ – especially when I thought about marriage and a family in my future (more on this later).  I didn’t foresee that the ‘role’ I would have in my 40s would be so different from that stereotype.

Prior to being a carer, I didn’t know a single male carer.  None whatever.  Of course, I do now.  I’ve met quite a few, either in person or via Twitter.  But prior to 2005, I had no concept of what it entailed to be a man who is a carer.  It was a cultural role that never existed for me to learn about.  It’s very rarely, if ever, covered in the media.  I know there are occasional media references to men who are carers but their role in the cultural world around us is never explained.  It’s as though they’ve just beamed down and started caring.  I didn’t get beamed down.  I’ve been through (and am still going through) a self-examination in terms of who I am as a man, similar to Ms. Day’s self-examination as a woman.  I’m not the “provider” that I expected to be.  I’m not going to go into detail about our financial affairs but our circumstances dictate that MW’s share of the household income is higher than mine.  I am a full-time carer.  A role that doesn’t appear to be valued too highly, regardless of gender.  I am a male, full-time carer.  I have assumed the nurturer/carer role that society appears to deem only suitable to women.  Even anthropologists are making inferences to the size of caring males’ testicles!!  (Don’t believe everything you read!)  When I tell someone I’m a full-time carer, the reply tends to start with, “Oh…..”, followed by a pregnant pause.  They’ve no frame of reference for meeting someone who has that role by circumstance rather than by choice, as a care-worker might.  It’s as though what I do – and by extension, who I am – isn’t “natural”.  I might as well be an alien, or a talking animal.  So, what does this make me in the eyes of other people?

The second raw nerve was about children.  The Women’s Hour interview continued, and referred to women who find themselves childless by circumstance.  (That is, they’ve not actively chosen to be child-free.)  This is a truth I’ve had to come to terms with myself.  I don’t have any children, and I’m not going to have any.  Both Ms. Day and the interviewer acknowledged that there are a number of men who find themselves childless but their experiences are different.  She’s right.  But it’s no less hard to come to terms with.  Just as I’m not a carer through choice but by circumstance, so I’m childless in the same way.  MW and I wanted to have a family.  We tried for ages but it didn’t happen.  Abortion has been part of both our lives so we assumed that there was no biological issue.  We considered IVF.  However, at that time, our energy was taken up coping with my Dad’s illness.  MW’s symptoms began very soon after Dad died.  The severity of MW’s initial MS relapse put a stop to our dreams at the time, and its ever-debilitating progressiveness has done the rest.  Although we both know what the reality of the situation is, we don’t discuss it often, save for brief “I wish we could have been parents” conversations, prompted by a TV programme or seeing a cute child when we’re out.  But these conversations never last long.  Rationally, I realise that caring for MW is too demanding to consider adoption or fostering.  But I feel very much unfulfilled as a man – a propagator of my species.  The prospect of my genes dying with me leaves a visceral scar.

Meanwhile, all my friends have gone on to become parents.  (MW’s friends have tended to be a bit older than her so the dynamic is a little different)  Ms Day spoke about how she felt a greater distance from her peers as they all had a common thread that maintains their interaction – i.e. having children.  I guess it comes naturally for parents to talk about their children: schooling, growth spurts, etc., even to strangers.  Becoming a carer is a great way to lose friends.  Not becoming a parent is another.  I sometimes sense people my age struggling to talk to me once they ascertain that I don’t have children.  It’s as though their entire catalogue of conversation is geared towards their children – either as a conversation starter or as a specialist subject to the exclusion of everything else.  Since I don’t have children, it’s assumed I won’t have anything in common with them – which I find strange – so conversation stops.  Perhaps I should turn the tables and act awkwardly towards non-carers?  No, maybe not.

You might read this and say, “what does it matter what other people think?”.  And you would probably make a very valid point.  The thing is, I look at myself in the mirror sometimes and wonder how I match up against the archetypal male ideal (which may or may not exist) that society/media would have me measure myself against.  I also wonder how other people score me against that same ideal.  Not enough to keep me awake nights but I do think about it.

So, what does it mean to be a man?  Maybe it’s all just bollocks.