A (chronically) fabulous weekend

I had *such* a good weekend-hosting another ace LB party, followed by a 36hr mates movie weekend of late nights & being up early enough for McDonalds breakfast (with 2hrs to spare-such is our dedication to fitting in an extra movie!).

The cost of this fabulous exertion for me, however, is increased aches, pain & more tiredness than my non chronic-pain-enduring friends. So instead of doing the few things on the To Do list I diligently wrote up before bed yesterday, to do when my mates had left, I crashed on the sofa & napped instead of going to church this eve (very disappointing as it’s a great talk topic at the mo!); dinner was brought to me on the sofa by my kind husband who knew enough to rouse me to eat tonight when I’d have rather slept but actually needed the energy & enjoyment of the eating more (he’s a keeper!). The weekend’s activities were absoluteeely worth it (!!!) but in hindsight, having the movie weekend off the back of the party was over zealous social planning (I can hear other chronic-pain endurers going ‘duh!’).

OK, I know that describing two days of mooching on the sofa watching (brilliant) films & eating guest-made treats as ‘exerting’ sounds ironic but it’s not. I also know I am FORTUNATE! Yes I wake in pain every day & sometimes cry in pain or, moreso, from the physical & emotional tiredness from it but, hello, I danced, chatted, served, laughed & ate & drank from Friday to Sunday, & had more fabulous fun & conversation than many healthier peeps this weekend! Amidst the hosting, I let my friends/guests wash up each morning while I got my pilates groove-on cos hey, I’ve learned how to receive love & help (well, am learning), & also because I believe that it’s kind to let others show love & appreciation through service if they want to.

The time with mates has been so wonderfully nourishing for me mentally & emotionally as we watched great stories, had fun & scintillating conversation, deepened new friendships & ate & drank heartily. But it’s also been two eves in a row of 5-6hrs sleep for a body that needs-& rarely gets-9+hrs to be rested, but which will still wake in aches & pain every single morning regardless of how many hours sleep it gets, cos, y’know, chronic pain life. Nonetheless, now I’m more & more aware, & ACCEPTING, of the need for chronic pain *self-care* planning, I’m learning to plan better in future. So I’ve written off the To Do list: I’ll just have to suck in choir practice tomorrow as I haven’t the energy to rehearse tonight, & I am cashing in on the on the best perk of my job (well second best after the free coffee!) & am going to work from home tomorrow-a luxury for which I am immeasurably grateful!! So this is me being open. As I write that my face is saying ‘ugh’ as I hate vulnerability & showing any weakness! But, I’ve realised that is colluding with internalised ignorant societal norms which dictate that physical & mental health = strength when, in fact, it takes *real strength* to recognise, accept & acknowledge one’s needs & limitations. So here are some of mine laid bare. And they don’t make me any less (chronically) fabulous!

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Me Before You-let’s kill disabled people?

OK, I have been looking forward to today for months: today is *the day* that Me Before You is released. And what a hoo ha there is about it! So I feel the need to wade into the debate-well attack-on the film.  I’ve read the book-unlike many who are commenting & even protesting, ugh!  To be more precise, I actually stayed up until 9am in the morning to finish it and then re-read it the same week.

And it definitely is *not* an ‘anti-disability’ book. Not a ‘snuff movie’ (Lol). Not a pro-euthanasia book. And not an anti-euthanasia one. These labels and criticisms miss the amazing depth and range of this story:

It is a story about love-of self and life and others.

It is about freedom-from fear, from shame, from doubt.

It is about class and hardship.

It is about family.

It is about hope.

It is about dreams and loss.

And it is about disability and euthanasia.

Yes, the chap (SPOILER alert!!!) wants to be euthanised. But that’s not making a judgement that all disabled people want to die, should want to die or should simply be killed without choice (yep, some ejits are actually suggesting that’s the film’s message!).

me before you protest pic(Hmm, only willfully offended people could take that message)

It’s saying this particular character wants to.  And that is his story and his choice. And as with all euthanasia choices it is based on both his physical condition and his personality.

Physically he is stuck. He’s not just ‘in a wheelchair’, he’s a quadriplegic: he can move one finger and his neck. A little. While that is tragic and horrid, it is something many people accept and live with and are happy in spite of-hence they aren’t asking for euthanasia.  But he is not able, or not willing, to live with it. Again: it’s his story not all disabled people’s.

He’s also in recurring, agonising pain. I know pain. I am in pain every day, all day. And anyone who has chronic pain and says they haven’t even passingly thought about death is lying (or has amazing drugs!).  Unlike Will, however, when my pain is bad I can get up, I can move position, take a bath, take meds, go to sleep, drink some wine, or watch some distracting Grey’s Anatomy! Whereas he is stuck, immobilised with searing pains, oh and suffers frequent pneumonia, and also night terrors.

Again, many people accept that and live with it and are happy in spite of this. I hope I would if it were me, but I do not know. What we readers know is that He Is Not.

And that’s where character comes in: he says, painfully, ‘I know I could have a good life with you, even a great life’ (paraphrasing from memory so excuse me if not exact). But ‘I am not a man who accepts’. He will not adapt, accept and press on to design a new, adapted life-like the many happy or contented quadriplegic people also mentioned in the book.   He wants HIS old life back. His active, adventurous, full, independent, busy life.  And if he can’t have it he doesn’t want the life he’s stuck with. So he wants to un-stick himself and be killed (because he can’t do it for himself).

That is not anti-disability. It is the story of many chronically ill or disabled people. Thankfully not all and not most. But it’s valid and real and important and needs to be told.  SO let’s stop criticising and just start listening to these sad but different and valid views. (Oh, and I promise I’m not just saying this because Sam Claflin is in the film 😉 )

me before you poster