Another regurgitation/choking/coughing fit this morning from MW left me in bits.  Again.  I’m starting to hear occasional wheezing, too.  I can’t do anything about it save lift her torso up for a few minutes and try and rub her back at the same time.  Not an easy feat, I can tell you.

I try not to let her see me upset.  I try to reassure her and not let her see that I feel like I’m helpless.  She’s deteriorating, and it always seems like she’s one coughing/choking episode from pneumonia.  All I keep being told is “there’s nothing we can do about it”.  And I’m not OK with that.

Totally unrelated: where the hell did this broody feeling come from?  And can it please sod off, I’m busy.

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.