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!

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

The Sound of an Island

WOULD YOU RATHER…be DEAF or BLIND? Most of you will answer deaf: how can one imagine the insecurity of not seeing where we are going? (even though we manage just fine walking down the road with our heads in our phones following the blue dot!) Nor seeing our loved ones’ faces? Or – worse yet- being unable to check our outfits in the mirror in the morning?!

And yet, Helen Keller, the amazing woman who was both deaf and blind but was taught to sign and speak and who then became a prolific writer and public speaker (#legend!!!), when asked which was worse surprisingly chose deafness. Being blind she said, cuts us off from things whereas being deaf cuts us off from people. Profound right? But true.

If we were to lose our sight we could use a kick-arse combo of adaptive technology, a trusty white stick and a friendly, trained canine to navigate the darkness. And we could dine with our family and listen to the TV (nearly) as per usual (given half of us listen to the TV while looking at our mobiles anyway, I say ‘as per usual’).

Whereas if one were to go deaf…

How many of our friends and family would actually put in the time, effort and cost to learn sign language? Reallllly? And to learn it well enough to communicate freely and fluently? And what of the painful, silent months in between while we all muddle through whilst learning?

And then there’s the person in the shop or the assistant at the tube.  There’s the infuriating, saddening loneliness of dinner parties or group coffee catch ups where everyone chats ways and you are stuck trying to lip read friends’ blurred mouths. Eesh. What isolation.

Thankfully I am neither deaf nor blind. But I do have trouble with my hearing. I know the separation of being in a group and laughing along to a joke I couldn’t hear; of saying ‘excuse me’ in order to have someone repeat what they said, only to not ear it the second or third time and give up.  I know the unnerving feeling of not quite knowing what’s going on in a situation or conversation. The feeling, the muffled sound of being on a social peninsula-connected to everyone on the mainland but standing a little way off by oneself surrounded by waves.

deaf image

Ah but there are hearing aids you say! Why yes, and many are amazing and wonderfully life-transforming. But unless they are the snazzy, discreet, oh-so costly ones, they generally amplify *all* sound-the cutlery banging on plates, the traffic passing the open window and the chatter of everyone in the venue, not just the friends’ in whose conversation one so dearly wishes to play a part.

So whilst hearing aids may be the way to go later on, in the meantime, I’ll get used to occasional half conversations and disjointed murmurings; I’ll practise enjoying silence and I’ll get used to the sporadic fear until it subsides.  And I’ll enjoy the lapping and splashing sounds of my peninsula-which my husband and, hopefully, my dearest friends will visit if ever my peninsula becomes an island.

Cripplehood & Socks

Regular people just bend and put their socks on; they don’t even think about it while doing so.  None of that ‘mindfulness shizzle’ with socks, nope, they could be thinking about the bus they’re gonna catch; breakfast; their favourite shade of Jennifer Aniston’s tan; calling the dentist: literally *anything*.  Not me. You wanna know an insight into one of the things which most pees me off about being an intermittent cripple? The unpredictability.

See, I didn’t know this would be a ‘Socks are Something to Think About & Focus on’ morning until it was.  Until I actually had them in my hand and went to put them on.  That’s when socks went from being something that just sort of ‘happened to something I needed to do-purposefully and, to make a certain mindful loving friend happy by using her new favourite word, ‘mindfully’ 😉 This required concentration, bodily awareness and clear recollection of Alexander Technique instructions on how to lift a leg and bend to meet it all while maintaining correct postural alignment. Sigh.  ‘All my stupidly healthy friends haven’t had to pay hundreds of quid to learn how to put their sodding socks on!’ I thought ungraciously.  ‘And of course it would be when David’s away’: cue internal ‘oh poor me’ moment (yes Natalia, because *of course* if he wasn’t on holiday he’d have been at home on Sock Duty at 3pm on a Thursday!).

Kid socks
What focus, what determination, what mindfulness!

But then my socks were on and I was ready to face my bagel, tea and procrastination, I mean essay.  Now, I do not wanna seem smug or inconsiderate to people who are more than intermittently crippled, or whose pain keeps them up all night, crowding out any concept of possibly maintaining any other thoughts, not just once in a while like moi but as a regular shitty occurrence.  But I don’t wanna seem jealous of healthy people either. To be honest, I’m not smug, unkind or jealous about anything really.  Instead I have ‘perspective’.  Today was a Sock Issue day. And probably evening.  And to quote Stereophonics, ‘maybe tomorrow’.  That’s the pissy part: I genuinely don’t know what tomorrow, or even this evening has in store for me. BUT I’m cool.  Because (and here’s why the ‘I’m not being smug or inconsiderate warning was made!), I know that I WILL be ok.

‘Can’t Roll Over in Bed or Put Socks or Joggers on Easily’ days are, thankfully, followed by ‘I’m a Regular (well actually very hot, intelligent & fun!) Able-Bodied Person Walking Around London Living my Life’ kind of days (with drugs and a cache of elasticated support straps-medicinal not kinky, honest!).  So that’s why no jealousy.  Cos, without wanting to get too saccharine on you, having to think about the least painful way to put socks on some days means I absolutely bloody enjoy other daily things more.  And it means when horrid health diagnoses or traffic accidents or general shit happens, I’m an actual ‘Good Man in the Storm’ kind of girl (not the fake Arizona kind Grey’s fans!).  Cos you know what? After sockgate was solved, I sat down in my warm house, where I live with my devoted, kind-hearted, sexy husband who absolutely bloody adores me.   I read a book, drank tea, listened to Bieber’s new song (you know you did too: Love Yourseeeelfff), and worked on my Masters essay.  BECAUSE, I can read and think and make tea and put the heating on *whenever I bloody want*!  What absolute jammy-git luxury is my life 🙂