The Spoon Theory

Before I start, I must must must point out that Spoon Theory is not of my design.  I wish it was, cos it's amazing, but it was written by Christine Miserandino as a way of explaining what life is like for a person with disabilities or illness.  Not an easy feat, but she does it brilliantly; reading her article made me very emotional, cos it was just so bang on.  The following post is merely my take on Spoon Theory; summarising it in my own words, and showing you why it gets to me in the way that it does.  I strongly suggest you read the original article by Miserandino first, as what I write will never come close to its sheer brilliance:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

As I said, Miserandino created Spoon Theory as a means of explaining a life with a disability or illness, in her case it's Lupus.  I totally understand how impossible – until Spoon Theory came along – it is to put into words how your life is affected on a day-to-day basis and, whenever friends ask, I usually just say that I'm used to it, and don't know anything different.  While this is true, I realise that it doesn't really answer the question of what it feels like to be disabled, which is the very question that sparked Miserando's original theory.

Without completely rewriting Spoon Theory, which is not the aim of this post, I'll summarise by saying that to answer her friend's question, Miserandino grabbed a number of spoons to visually represent the choices that a disability or illness automatically made you aware of.  Each spoon represents a choice or option and, while the majority of people have so many spoons that they don't notice when one is 'used up', people with disabilities do, and need to be aware of exactly how many they have at the beginning of each day.  Disabled or ill people have to make choices from the moment they get up in the morning, to last thing at night, and these decisions will all affect how that person's day evolves.  Of course, everyone has choices, like what to wear in the morning, what to eat for breakfast, how to travel to work/school etc, but when you have a limited number of spoons, the impact of these choices is much bigger, and their nature also varies.

For instance, Miserandino asks her friend to tell her exactly what she does during the day, beginning with getting up in the morning.  The friend says that her first task is to get ready for work; pretty simple and mundane.  Not for Miserandino, who immediately takes away a spoon, stating that it's not that easy as you didn't sleep well the night before and are exhausted, you have to summon the energy to get out of bed and have breakfast, so that you can take the medication.  Miserandino tells her friend that, by not taking her medication, she is effectively losing all of her spoons for that day. 

The theory goes on in this way, with Miserandino taking away a spoon for every decision her friend has had to make during her daily routine.  It is possible to increase the amount of spoons you have, by using some of tomorrow's ration, but this just means that tomorrow will be all the more difficult and, as Miserandino says, tomorrow may well be the day that you get ill, so being short of spoons could prove disastrous. 

This brief – and not at all as eloquent as Miserandino's – description of Spoon Theory hopefully shows that, if you're disabled or ill, you have to constantly be thinking.  You have to plan each and every aspect of your day, no matter how small it may seem, so as to get the most out of it, without burning yourself out.  It will probably be the case that you have good and bad days, with no way of knowing when a bad day will occur, and this will always be in the back of a disabled person's mind.  Therefore, if you choose to use up some of tomorrow's spoons because you're running low, or maybe you want to do something extra today, there is always the risk that tomorrow will be one of those bad days, and you just don't have enough spoons to get through it.

Miserandino sensed that her friend had begun to understand just a little of what she was going through, and was hopeful that she'd be a bit more considerate and patient in terms of what she can and can't do.  To cheer her friend up, Miserandino says that at least she isn't wasteful of her spoons, unlike the many people who don't need to keep track of them, and thus each spoon she uses is really important to her.  The fact that Miserandino chooses to use up one of her spoons by spending time with this friend, ultimately places a great importance on this choice; it's not that her friend should feel privileged, on the contrary, it shows how much she means to Miserandino.

Miserandino says she now uses Spoon Theory a lot to answer questions that people may have about her life, and it's caught on, with #spoonie becoming a regular feature on twitter.  As Miserandino says, once you understand Spoon Theory, you not only learn more about disability, but disabled people can also learn more about themselves.

I've been trying for days to apply Spoon Theory to my own life, and it's really hard, all the more respect to Miserandino.  Unlike Miserandino, I have a physical disability that is obvious, and I've had it all my life, so I'm not trying to get used to a new way of life, or mourning one that I've lost.  In that respect, I think I have it 'easier', as I never get the 'but you don't look ill' comments, in fact, people rarely question me at all, I suppose it's a case of  'oh right, she's disabled, OK then'.  Also, Miserandino talks about missing the freedom she had back when she was healthy, and how she had to learn how to cope.  Again, I don't know anything different, so rather than learning a new regime, I've had nearly 26 years to develop mine.  Not that life is completely simple, and a bed of roses, but I don't want people to think I'm bitter and twisted.  Yes, there are things I wish I could do, and things that are straightforward for non-disabled people can prove to be a nightmare for me, but I don't have a bad life, not really, and I'm definitely not aiming for the sympathy vote.  So thanks, but no thanks.

Like Miserandino, my life is based on choices or, more accurately, a lack of choices.  At the moment, I don't have a 'typical' daily routine, as I only work one day a week, and I'm sort of between enablers, so I'll give you a hypothetical, yet based on facts, day in the life of Bad Wolf, #spoonie.

Miserandino gave her friend a bunch of spoons to 'start' her day, and asked her to count them, so as not to waste any.  The friend had 12 as it turned out, so let's say I have 12 today too.  I lose a spoon as soon as I wake up in the morning, cos I can't choose when I get up and dressed.  My mother is currently my main carer, and I have to wait for her to come in and take my CPAP – a mask I wear at night to open my airways – off, before getting me washed and dressed.  While we do get up at roughly the same time each day, I have very little control over when this is.  Hence, there goes the first spoon.  I'll lose the second one almost immediately as, although I do have more than a say in what I wear, it is ultimately mother that has 'the power'.  If it's cold, for example, she insists on me wearing long sleeves, thicker tops, and jackets.  The obvious response to that would be 'well yeah, she doesn't want you to get cold', but that's the thing; I don't feel the cold.  99% of the time, I'm too hot, and it's uncomfortable.  It doesn't help that if I'm not lying in my bed, I'm sitting in my wheelchair, so my back is constantly against something, and doesn't get any air.  Mother is obviously aware of this but, due to health problems I had as a child, and the constrictions of my chest, she worries I'll get an infection or something.  Moreover, what I wear is governed by my condition.  On a good day – which is the basis for this post – I can wear whatever's in the wardrobe, weather and mother permitting, natch.  On a bad day, I may have to put on clothes that require the least amount of effort – loose, generally unflattering garments – depending on where, and how bad, my pain is.  So my lack of control over choosing exactly what I put on in the morning takes me down to 10 spoons.  Even if I put on a layout that can be removed later in the day, it depends who I'm with as to whether I actually can do so thus, technically, that would be me losing another spoon then. 

The next logical step would be to have breakfast, right?  Er, wrong.  I don't eat breakfast, largely cos I never feel up to it in the mornings; I usually feel pretty rough actually.  Also, I now only seem to be able to manage one meal a day, two tops.  I deliberately choose not to eat breakfast, so that I can manage a meal later on at lunch time – not always – and feel more inclined to eat in the evenings, when we have our main meal.  Without going into too much of the gory – and embarrassing – details, this stems from an operation I had when I was six, to fuse my curvy spine.  Let's just say, it left me unable to go to the loo without, er, intervention, which, together with my small size, means that I'm not often what you'd call comfortable.  Ahem, right, choosing when and when not to eat; minus one spoon.

Finally with the breakfast thing, not eating in the mornings means I have more time.  I don't always sleep too well, so those few extra minutes I save by not having breakfast, and getting up that fraction later, are pretty priceless.  It means I don't have to rush, which I'm really not up to in the mornings anyway, and gives mother a couple more minutes to herself, rather than helping me eat.

Talking of time, I'd love to be able to slap some make-up on in the mornings but, cos I have limited movement in my arms, this can take me a good while.  I can only get my hands properly up to my face while lying down – cos I'm more relaxed, and less constricted – so putting make-up on in bed, whilst dressed, is not something that can be rushed.  Hence, on an average day, I don't bother.  Bizarrely, this task uses quite a lot of energy too, as my arms get achy, particularly my left, which has a metal pin in it.  Doing too much with this arm results in it bloody hurting but, technically, it's my 'good' arm, so I have to think about which tasks are necessary, and which are luxuries.  Either way, whether I bother or not, I lose a spoon.

If I know the night before that I'll have time to preen, cos I'm not going out till later in the day; or I just want to look half decent, I'll make the effort to get everything out and ready then, saving a bit of time and energy, but subsequently using an extra spoon.  Course, putting make-up on requires taking it off at the end of the day, when my energy supplies are running low; bye-bye spoon. 

I'm now down to six spoons – I've decided to put make-up on – and am planning on going out with my enabler.  Ha, there go four spoons.  I lose the first because it's not as simple as just Going Out; I can't leave plans till the last minute, as I have to arrange a time well in advance, that's suitable for my enabler, friends I may be meeting, and mother, who's effectively being deprived of a car – albeit, my car.  There goes another spoon, as I find travelling in a car dead uncomfortable.  I travel in the back, in my wheelchair, and can feel every single bump and pothole on the road, due to the car's lowered floor, and the lack of cushioning between floor and me.  Even on a good day it hurts, and I often wind up with a headache that lasts the rest of the day.  I'm a bit of a nervous passenger too, following a car accident (see The Event) and, even though I'm much better than I was, I still find longer journeys, unknown roads, and motorways stressful.  Don't even get me started on public transport, becaus even if I could physically, I don't think I could mentally, or emotionally, cope. 

Fitting in with the plans of others results in the loss of another spoon as, if I wanted to go to the cinema, it's not necessarily my decision as to what time I go, or even where – going to a larger cinema further afield requires extra time, which may not be possible.  I rarely bother to go to the cinema for these reasons as, nine times outta 10, the films I want to see aren't showing at a time that's convenient.  Going for coffee or lunch is the easier option, yet still requires much forward planning, as a time that may be good for me and my enabler may not work for friend(s); I couldn't go out in the evening, for example. 

The fact that I've chosen to go out for a substantial amount of time automatically robs me of another spoon, as I find just sitting incredibly tiring.  Once I'm in my wheelchair, I'm unable to alter my position and, though I start off pretty comfortable, it doesn't last long, as my muscles, neck and back soon start to ache.  I often find that, if I've been in my chair for four hours – which isn't that long if you think about it – or more, I really feel it the next day, and don't have a lot of energy to do much.  Thus, planning to go out really requires me 'borrowing' a spoon or two from the next day.

Ok, I'm back home after a day out, I've taken my make-up off, I'm tired and probably achy, and I've got two spoons left.  Tired and achy screams bath, but no, I can only do that on one of the days I have carers in, unless mother's feeling particularly energetic and generous; one spoon.

I'll generally lie in bed and watch TV for the rest of the evening; there's no point me turning in for the night until the parentals retire – which is never late – as I'm rubbish at sleeping, so any noise/movement/light is bound to keep me awake.  Equally, if I wanted to stay up and watch something later, that's pretty much out the question too, cos I can't turn the TV off at the mains, and can't bear the standby light shining right in my eyes.  A bit pathetic, I know.  Lack of control over bedtime, and I am out of spoons.
There we are then, my life as a spoonie.  That would all have happened on a good day; a bad day – i.e. I have a broken bone – would see me with a lot less spoons to start with.  Depending on where I was on the 'pain scale' – one being the lowest, 10 being the worst pain you've ever had – I'd probably be laid up in bed, trying to conserve my spoons.  I won't go into the details of a bad day any further as, frankly, this post is long enough, and I do genuinely have more good days than bad.  Besides, thinking about the 'what ifs?' has a habit of driving me insane; if I worried about breaking something every time I moved – or even breathed, it's happened – then I'd never do anything, and I'd just be completely paranoid.  So let's not go there.

I hope that this examination of Miserandino's brilliant Spoon Theory has helped give you more of an insight into me, and the limitations that disabled people have in general.  While we all have different reasons for losing our spoons, we're all the same in that we notice when we've lost one.  It is crap not being in control, and missing out on everyday social things that a lot of people take for granted.  So if anything, I hope this will make those of you with a disabled friend or relative more understanding of their limitations, and give those of you with disabilities a way of explaining yourself.  Not that we have to, or should, but just in case those awkward questions arise.

BW xxx

Re-Enablement

*Updated 25/01/12*

Something else pretty big happened last year; my enabler, VW, got pregnant.  Now I know this news is obviously way bigger and more important to her than it will ever be to me as, unfortunately, I had nothing to do with this, much as I love her.  It's still a mahoosive thing for me though, as I will now explain, whist trying to redeem my inner selflessness.   It's not all about me, honest.

Without going into too much detail, VW was, basically, under the assumption that it would be very difficult for her to have children, maybe even impossible.  So when she told me last June that she was pregnant, it was quite a shock for both of us.  I must clarify here, in case she reads this; when I say she told me, what actually happened was I dragged it out of her.  Harsh I know.  I didn't mean to, but she was being all mysterious, asking if I had any plans for the following week, as she wasn't going to be able to see me.  I initially assumed she was covering for someone else, no.  Going away with the boyfriend?  Noo.  Skiving?  Nooo.  I don't even know what made me ask her if she was pregnant, but I did.  Yes.  Cue emotional 'I'm very pleased/happy for you' speech, which of course I was – am.  I knew how much she wanted this, and how awesome she's going to be, but also, at the back of my mind, I knew that this meant I'd eventually lose her.

She has been brilliant over the past seven months, trying to help me get things sorted for when she leaves in February.  Aside from [some of] my family and friends, I have very little outside support.  I have a couple of regular carers that come throughout the week to help with bathing, and another to help me at lunchtime when I'm at the museum but, apart from that, and VW, I have zilch.  My home carers can only do so much, as they're not allowed to lift me, and I'm still waiting for a hoist to be set up.  Not sure if I've mentioned this before but, cos of my condition (Brittle Bone Disease, or O.I), moving me isn't a straightforward task.  My mother has always done 99% of the lifting, with the odd exception of very trusted [and brave] friends and other relatives, and she still does it all today.  I've been waiting for my, frankly, rubbish Occupational Therapist to come up with a suitable means of hoisting me from A. to B. for what must be almost two years now.  I know I'm a difficult case, but really, does it have to be this hard?  Anyway, digressing.  The point is, that VW has been fighting this already crappy system on my behalf in order to, a) try and resolve the above issue and b), set me up with a suitable replacement, to fill the huge void she'll be leaving in my life.  Not possible, but bless her for trying.

For reasons that are far too complicated for me to understand, let alone write, I never had to pay anything for VW's services – innuendo much intended.  It was actually one of the few things that my OT did get right, the other was finding a house for me and my mum when we really needed to get out of a bad situation.  VW's role was chiefly to give me back the confidence I lost after The Event, and to provide me with some much-needed independence.  She certainly did both of those things, but particularly the first, as I now barely think anything of going out in the car – unless it's a motorway trip, that still bothers me a little, but really, minor.  Hence why I didn't have to pay I suppose, as this was classed as 're-enablement'; a service helping people get back on their feet – so to speak – after a difficult time, an illness, hospitalisation etc.  This was only meant to last for a few months; until I was back to 'normal' again anyway, but two years later…

What I need, and what VW has been doing for me for the past two years – somewhat under the radar – is an enabler.  Someone to take me out shopping, cinema, to meet friends, and so on.  Obviously, none of this comes free, and this is what VW has been helping me sort out; putting a rocket under my useless OT, in order to get her to reassess me, so that I can have more hours of enabling time, and the money to pay for it – courtesy of Direct Payments.

VW must have actual magical powers cos, finally, after much pissing around – by OT, but you got that – it is sorted, and my new enabler starts in February.  Hoorah.  Obviously, nothing is that simple.  Yes, I'm happy because I managed to claw a couple of extra hours out of the government, who totally bloody owe me (see The Event) - I'm now entitled to five whole hours a week, as opposed to three.  Yes, I'm also happy with my new enabler, as I chose her - it's one of the carers that comes in the week, so I'm used to her already, and we get on well.  She's not taken me out yet, or practised securing me in the car and, while I might find it a bit difficult to get used to somebody else driving, I reckon I'll be alright, in a not-freaking-out-kinda-way.  Besides, I've come to realise over the past couple of years particularly, that this – getting used to other people doing things for me – is my life, I've just gotta deal with it.  My mother can't do everything for ever, and I wouldn't want her to; she's done enough.  We should've sorted al this out a long time ago, then I probably wouldn't have so many issues about learning to trust new people.  We kinda just struggled on, finding our own way to do things, without asking for any help; and look where that got us.  There is loads of amazing support out there for people with disabilities, and I've experienced just a fraction of it, but my main source of support has been from my friends, particularly Gloria and VW, and family.  I think it's about time somebody else chipped in.  I'm not saying the world owes me, but my friends and family need a break so that they can be just friends and family, not carers, and it's not like I've asked for a lot over the past [nearly] 26 years.

Course, getting use to a new team means saying goodbye to the old one, and it is gonna be super hard to do that where VW is concerned.   Aside from everything I've already credited her for, she has been a brilliant friend.   I've never really had the opportunity to just go out with a friend, and be normal, so for a couple of hours a week, VW gave me that experience.  Yes, OK, that was her job, and she was getting paid for it, so maybe that doesn't make it a 'real' friendship.  But I think the world of her, and I hope she sees me as a friend now, rather than just a client.  I haven't asked, as this would come across as needy – right?  I'm just going by the fact that we talk a lot and, while she is a very open person anyway, some of the stuff she's told me is the sort of thing you'd only tell those you really trust, so if I'm in that category, then that'll do me. 

She's also enabled me – see what I did there? – to feel involved with her pregnancy; something that I largely missed out on with other friends, as I never saw them.  It has been incredible, without being too mushy.  Not so much the 'miracle of life' stuff – yawn – but more how it's affected her.  It's gone so quickly, and obviously there's the physical changes – though she still looks amazing.  Bitch – but the emotional/personality changes have been the most eye-opening.  VW's always been one of those people that only cries if she's very upset, and doesn't often let you know that she's worried about anything, mainly cos doesn't often seem to worry or dwell on things that can't be changed.  Nothing like me at all!  Now though, thanks to those blessed hormones, she cries at anything and, more recently, is really paranoid about things that are so unlikely to happen.  Last week she nearly had me going when she said she wanted to learn first aid, as one of the things that she's worrying about is the baby dying.  I wasn't upset cos I'd had the same thoughts – I hadn't – but because she was having them.  It killed me to think that my fearless VW, who has wanted this so badly, could ever be freaked out by – basically – the scariest thought a woman can have.  And there's absolutely nothing I can do for her, apart from being a mate, and letting her know she can always talk to me about anything.  Not that I know much, and even less about pregnancy and babies, but I can have a go.   I could never do for her what she's done for me, which is quite hard to get over, as I often feel pretty useless, but as long as I offer myself as a friend, what more can I do?

I hope this won't be the end of a beautiful friendship, and that VW – and bump – will be part of my life for a very long time.  Don't think I'd be quite the same without her.  Or quite as sane.

BW xxx

* We had a practise run of getting me in and out the car on Monday, with VW giving a demo, and SB – VW's replacement – having a go herself.  When it was SB's turn, VW turned to me and said 'this is weird', meaning it didn't feel that long ago that she was learning the ropes, and now she was handing over to someone else.  I think she felt quite protective, telling SB to be careful when driving over rough roads, and telling me afterwards that, if ever something didn't feel right, I must say so.  Monday the 6^th of February – VW's last day with me – is going to be a very emotional one.  Though, I was given a pretty strong assurance that I'm not going to lose VW completely, with her making plans to meet me, with my new enabler, in town, once she's recovered and all.

So no one told you life was gonna be this way...

*Clap clap clap clap*

Ok, so my job's not a joke, as I don't have one, and I'm not broke; though I'm certainly not rich.  Nowhere near.  I wouldn't even describe myself as 'comfortable', just um, stable?  My love life definitely is DOA.  Fact.  But, all that aside, I'm using the above Rembrandts lyric to illustrate the following point: that friends are there for you, well, me anyway.

I finally shared a secret with a friend, specifically Gloria, a couple weeks ago, and it really did feel like the proverbial weight had been lifted.   I still can't really elaborate too much on what this secret is, though I suppose this blog is meant to be anonymous... Still, you never know, so let's just say I used to live with a very difficult, at times violent, family member; but I don't anymore.  Haven't told many people about this, a) it's not the kinda thing that one can easily bring up in conversation, b) other family members would be furious with me if they found out I'd been telling tales, in case the 'culprit' was put in jeopardy; God forbid.  Families have very strange ideologies don't they?  Kind of a pack mentality.  Anyway, c) it's bloody hard to talk about.

On the one hand I feel really guilty, like every time I do say something, I'm betraying certain members of my family, or pack; those that have seemingly put all this in the past, and have moved on.  Maybe I'm not a very forgiving person.  On the other hand, I feel like I should be allowed to talk about such things if I want to.  It's my right, damn it.  And aside from the whole freedom of speech aspect, I got to the point recently that if I didn't talk, I was gonna go crazy.  Again.

That's one of the many reasons why I was so messed up last year as, although this is technically all in the past, it can still so easily flare up again, with Christmas being a major catalyst.  Is it me, or does Christmas make everything like 10 times worse?  It's such a big deal to be all together as one big happy family, but the reality is that sometimes this is a Total Nightmare.  So yeah, Christmas + family issues + mountain of essays = one stressy wolf.

I went to the Mentoring session, and it was ok, not what I expected, which I think is a good thing.  I was sooooo nervous, but all I really had to do was talk about how hard I found last term, within the context of university, nothing else.  Phew.  Going again this Wednesday, expecting (hoping) for practical advice on how best to tackle this 20,000 word dissertation, which I'm still dreading.

I've signed up for counselling too, which I can honestly say I am terrified about.  I mean, I think it's about time I got some - counselling, not... anyway - but I'm freaking out.  How much do I say about, well, anything?  I know I don't have to say anything at all, but it's totally connected, and totally turning me into a raving loon, so if I don't say anything, then surely I'll be limiting how much help the counsellor can offer me, and how much benefit I'm going to get out of it.  But, and this why I rarely tell people, what if what I say gets taken way too dramatically, and they think I'm still in danger, which I'm not, for the record, but what if?  It would rip my family apart, which is why I haven't told any of them; they'd freak out that I'd dob this person in, and probably tell me that I didn't need any counselling, like they did before, after The Event.  I did need it then, I was a mess, but still, mothers know best. 

I also, plain and simply, just don't want to worry them, they've got/had enough problems, how can I add to them by raking up the (pretty recent) past?  To that end, I've told my mother, who I live with, and who is my main carer, absolutely nada.  And, as far as she knows, my first counselling session, at 9am on the 23rd, is a change of seminar time.  She could consequently 'kill' my poor innocent lecturer.  I am an awful daughter, but what else can I do?  I hate lying, though I am scarily very good at it.  This is something that I need to do by myself, for myself.  With the help of Gloria, of course, who I owe so much too; note-taker, friend, adviser, confidant, counsellor, alibi, partner-in-crime, provider of much chocolate etc.  I feel just as bad for having to get her to lie for me too, though I guess she wouldn't do it if she wasn't such a loyal pal, and for that I am forever grateful.

I guess if, like me, your life involves being totally dependent on others, the only way to achieve any form of independence is to depend even more heavily on those you trust most; in my case, friends.

BW xxx

Talking Talking Happy Talk

I'm baaaa-aaaaack, did yer miss me??  No?  Oh, right then... Well I've missed blogging for sure.  Feel a bit like a neglectful parent but, to be honest, I've had some pretty legit reasons for my absence.  Yeahhhh, so haven't had such a good time of it of late, what with one thing and another.  Obviously there's been all the stress of Uni, which I won't go over again, see my earlier post Depressions of a Mad Wolf for details.  But I'm delighted to announce that I'm on top of it, in fact more than on top of it; I've climbed the mountain and am casually lazing on the other side, enjoying a crafty fag and appreciating the smaller things in life, like puppies and raindrops.  Well not quite, I don't smoke, but you get the picture.  I've finished all three of my essays in plenty of time for Christmas, and am now officially on holiday.  Phew, thank Crunchie for that.

I still don't quite know what happened back there, why I had such a meltdown, and although I'm feeling really good at the moment (haven't cried for 9 days, record!), I'm worried it will happen again.  I mean, it was only 13,000 words, and I had enough time to do it, so why all the fuss?  Pffffffft, I really dunno.  I think the pressure just got too much, and I literally boiled over.  There's also been some long-standing family stuff going on, which I can't really go into now.  I mean, I want to, think it would be quite cathartic actually, but a couple of close friends read this blog, and I don't wanna say stuff on here without talking to them first.  So let's just say that some old crap got dragged up again, and it didn't help.

Talking of talking, I have actually talked to somebody about the aforementioned crap, namely the brilliant and wise beyond her years, VW.  I'm not normally very good at offloading, it's like Donna (Catherine Tate) said to the Doctor once: 'you talk all the time but you don't say anything'.  Yep, that about sums me up too.  I'm a great listener, and can talk for England, or any other country for that matter, but when it comes to sharing my emotional stuff, I'm harder to break than the Da Vinci code.  Dunno why, always have been.  Hate crying in front of people for a start, am even less attractive crying than normal, and I am a crier, so 'fraid one goes hand in hand with the other. 

Anyway, so I talked to VW, and told her things that I've not told anyone before, which was really hard.  Really hard.  I didn't cry though.  Progress.  She gave me some advice, but mainly it was good to have someone to listen.  One of her gems of wisdom was to talk more, and she's right, so I will.  I'm even signed up for a mentoring session at Uni on the 26th of Jan.  Apparently 'mentoring' is like counselling but different as you get support with study skills etc.  Maybe it's what I need.  What with the home stuff and Uni and everything, it probably would be good to talk.  Think that's why I like blogging, it's kinda like therapy.  Only rather one-way... Didn't even have any counselling after The Event, which I probably should've done, as even now I can't think about it without going all cringey.

I'm hoping that 2011 will see a much calmer, less tearful, happy wolf.  2010 wasn't a bad year on the whole, in fact it was frickin' great!  Apart from the last couple months... Oh, and last New Year's Day... When The Doctor regenerated?  Duhhhhh.  Highlights of 2010 then, I graduated; one of the best moments of my life, and got accepted onto the MA; which a few years ago I never would've seen happening.  I had the best birthday that I've had in a very long time, which lasted a week, and involved some amazing friends and relatively little alcohol.  I celebrated living in my home for a year, which was very special for me and my mother on a personal level; new beginnings and all that.  And I've developed a very close, stronger than super glue, bond with VW (God help her), who has really helped boost my confidence and, like I say, just been the rock I needed, showing me that it really is ok to share stuff.  Even if it involves the waterworks I guess.  Even her Christmas card, which she bought round today, made me well up (in a good way); she said that I was amazing, and not to forget it.  Of course, she's right.  She told me off today too, for working too hard.  Of course, she's right.

So gonna try and be positive about the forthcoming year.  Yes I've still got another term and a 20,000 word dissertation to get through, but I'll have the mentoring support (providing I ask for it).  Yes my family are still gonna drive me insane, but they're my family, and I gotta stick by 'em... Some of them anyway.  If I don't who will?  No one else would have them.  And I've still got my friends, some of whom are probably gonna hear a lot more from me in the very near future.  Poor buggers.  In fact, run you people that know me, run faaaaarrrrr away!

Merry Christmas everyone, and have an awesome New Year,

BW xxx

PS, I've deliberately avoided mentioning until now the fact that, for the first Christmas in five years, David Tennant won't be The Doctor.  It's just too gruesome a thought, as a certain Ms Golightly would say (RIP Blake Edwards).  It will be a strange and sad Christmas evening, without David Tennant lighting up my bedroom - what?  I watch Doctor Who in bed, what on earth did you think I meant?  You disgusting lot.

PPS, in case I don't get chance to blog again before New Year, here are my resolutions:

To be a nicer, more supportive, daughter.
To blog more, I know I've been pretty slack lately.
To say that I need help/support/a chat/a blub as soon as I need it, not several weeks later.  I don't ever wanna feel like that again.
To be happy.

Wanted

With Christmas fast approaching (arrrrggghhh, I know) I, along with the vast majority of the population, have been thinking about what the hell to get the nearest and dearest.  For the past couple years, I've taken to writing an itemised list of things that I'd like, and 9 times outta 10, it's paid off.  Maybe I'm a spoilt brat, but I never ask for the Earth, just the odd DVD (which my mother loathes buying for me), book, PS2 game etc, and it saves the annual Oscar-winning performance of: 'Wow, that's awesome.  Thanks a lot'.

This post, however, is not a 'please may I have...?' list, or even a wish list; it's a Want (with a capital W), Veruca Salt, don't-care-how-I-want-it-now, kinda list.  I was always told by my wise elders that 'I want never gets', and in the case of the following items, they're probably right.

#1 - David Tennant - c'mon, did you expect anything less?  Difficult to post I imagine, but fun to unwrap, I imagine... frequently...

#2 - A Boyfriend - preferably David Tennant, but failing that, ANYONE will do.  Well, maybe not anyone; they've gotta be able to accept me, for me, and see past my disability and many (many) oddities.  Does such a man exist??  No offence lads, but I've not found one yet.  It's not just about the sex, though I've heard it can be pretty good, I wouldn't know.  It's more about the feeling of being wanted, being needed and, ultimately, being loved.  I mean, I know I am loved, I get that impression quite often; from my friends, but it's never in that way... Least I don't think it is... I keep having visions of ending up like SuBo - only without the amazing voice - I'm already half as bonkers.

#3 - A Baby - said all this before, and ideally I need Item 2 first, though these days... Anyway, yes, super broody.  Nearly all my closest friends have now reproduced and, while I'm beyond happy for them, and think all their children are gorgeous, it does remind me of what I don't, and might never, have.  I don't even know if I could, physically like, but it'd be nice to find out.

#4 - A Job - I'm 24, and I've never had a full-time job.  Fact.  I have worked before; I've been a local correspondant on a Disability magazine, but we only met quarterly; I've been a volunteer classroom assisstant and support worker at my secondary school, which I loved, but it was only voluntary; and I've written small articles for a couple of local newspapers, but they were always about me, I wasn't actually working for anyone.  I love working with people, and I think I wanna teach (Film or Media Studies pref), but then I like the idea of working within the (rather vague) world of student support.  So really, I have no concrete idea of what I want to do.  There's also the small fact that, whatever I do, I'm gonna need support, and I don't know how the hell that would work, or even if it's remotely possible.  Had hours of endless fun thinking about that one,

#5 - Gas and Air to be available on prescription - have had it on two separate occasions now; once after breaking my arm, then as a result of The Event.  It is some seriously good shit but, and please take note ladies, it does not take the pain away; just makes you feel so stoned that you don't care how much it hurts, or how much you scream.  Now, who doesn't want their own personal supply of Entonox in their home?

#6 - A Hug - physically an impossibility for me, as I'm likely to shatter into a thousand pieces, which I know from experience, hurts.  But still, it would be nice sometimes, and of the many things I can't do, it's the one thing I wish I could.  Well, there are some other things...

BW xxx

PS, found out Dark Handsome Stranger's full name, so am now free to stalk him on Facebook, hurrah!  Though, this does mean that I've discovered he has a girlfriend, boo hoo.  Oh, and he's younger than me.  Brilliant.  Now I just feel like a perv, an old perv at that.

The Event

Noooo, not Channel 4's new 'thriller', which I've successfully avoided so far, due to a) forgetting to watch the first ep, b) not having time to catch-up with the first ep and c), being so disappointed with Flash Forward's 'finale' that I just didn't wanna put myself through such trauma again.  So, by The Event, I mean something far more personal; something that I've already alluded to a couple times in this blog; and something that, hopefully, will give you an even greater insight into the scary realms of ME.


On 11 October 2004, at approximately 10:10am, I was thrown out of my wheelchair onto the floor of a taxi, breaking both arms and legs. 


Up until this point, I was a pretty average student, I stayed in education until I was 18, got my A-levels, and intended to go to university.  I had applied to two, to study either Journalism or Film; with the latter being my preferred choice.  However, I guess I didn't work as hard as I should have done at college, and didn't take it seriously enough - does anyone at that age? - so ended up not achieving good enough grades to get onto the Film degree.  Therefore, I had to settle for my second choice of Journalism, which was further away from my home, and it was arranged that I would travel by County Council-provided taxi, in order to give me some more independence (ha ha).  Normally, I would travel in my mother's car, sitting in a child's car seat, and then be transferred by her into my wheelchair at the other end , but because I was doing this journey on my own, transferring would not have been possible, so I had to actually make the journey in my wheelchair.


Survived the first trip to and from Uni on October 4th relatively unscathed though, looking back, I didn't feel 100% safe even then, but thought this was just me being a 'fraidy cat' (dog?), and was determined to carry on; hoping I'd just get used to it.  This bravado was dramatically short-lived, and one week later, about 20 minutes away from my first lecture The Event, which still affects my life even now, occurred.


I still don't know what happened exactly, all I know for sure is that the driver braked suddenly, and I was thrown forward, landing on the taxi floor.  The first thing I remember (vividly) is hearing someone screaming, and then realising it was me.  I never believed that phenomenon, often clichéd in books and films, was possible; not being aware of a sound that your own body is making.  But trust me, it's possible.  It's kinda like your mind is frozen in time for a split-second, while the rest of you, and the rest of the world, goes on.


I don't think I ever lost consciousness, though I really wish I had as, when I 'came to', I was aware of the worst pain imaginable.  They say that, for a woman, childbirth is the worst pain you can feel, but I'd beg to differ.  Have never been in labour, but would've quite happily given vaginal birth to octuplets (if that was humanly possible), than be in the agony I was in then.  Even thinking about it now, 6 years later, I stil feel realy sick and tense - like when you're in the same room as a bunch of balloons and you KNOW one of them's gonna burst - only 10 billion times worse, so I do try not to think about it too much; it's hard though.  I also try not to get too close to balloons...


I wouldn't wish the above experience on my worst enemy, not even Jude Law, though sometimes I could just slap him...  Anyway, I digress.  Was taken to hospital by air ambulance - now get really freaked out by low-flying helicopters; seriously, I'm a frigging nutter - and promptly (well, several hours later) got sent home.  There wasn't a lot that could be done for me, as putting me into plaster would only do more damage, due to the weight.  So to bed I went, which is where I remained for pretty much the rest of the year.  During my recovery I continued studying, using voice recognition software to dictate my coursework, and somehow managed to get a 2:1 for my first year.  But, while I was pretty much fully recovered (physically at least) by January 2005, my confidence was completely trashed, and I gave up the course.


For a good few months I was at a complete loss as to what to do with my life; had no future plans; no aspirations and, most significantly, no confidence.  But then I met a man called The Doctor...


As I've said before, Doctor Who gave me something to look forward too, and acted as a form of escapism; anything, quite frankly, would have been an improvement on my current situation, but a life in the TARDIS, travelling endlessly through time and space with a handsome stranger?  Errr, yes please.  That's why I can so emphasise with Rose Tyler, and Billie Piper (albeit a younger model); me and Rose were the same age, both stuck in a rut, bored with life, no real future etc etc.  We trusted the Doctor, and fell in love with him, in our own way, and I can't help feeling that having Doctor Who to look forward to every week kept me going.  Billie, on the other hand, inspired me in a totally different to Rose, as she's also come pretty darn close to pegging it; in her case as a result of a serious eating disorder - which I'm very unlikely to suffer from; too darn greedy, too many little pigs and children in red coats etc.


Seriously though, I'd grown up listening to Billie-Because-We-Want-To-Piper's music (still do fyi, shut up you), and having a shared experience (sort of) with somebody, particularly someone so close in age, really helped me.  Ok maybe I sound like BP's official stalker, but the fact that she so brilliantly put her life back together inspired me to do the same, and I did.


In October 2005, one year after the Universe collapsed around me, I got a place at my local college, where I stayed for two years, gradually re-building my confidence (and my academic skills), before finally starting the Film degree that I'd failed to get onto all those years ago.  I graduated with a 2:1 this July just gone - perhaps one of the best days of my life - and the rest, as they say, is history.  Kinda...


October 11, 2004 was definately the worst day of my life, but it became the best thing that ever happend to me.  Yes, I'm a more nervous passenger than I was before - though, I have improved; no more panic attacks - bonus.  Yes, I am a bit freaked out by helicopters, and no, sometimes I'm not as confident in myself as I could be.  But, as a result of th accident I've made some amazing friends, have a degree in Film at one of the top Unis, and am pursuing a Masters.  I can also now, quite happily, travel in a car in my wheelchair (not The Chair, that got sent to the knacker's yard).  Ok so the car is generally driven by my mother, but I have also pulled myself together enough now to allow my enabler, and very good friend VW, to take me out and about.  Though, frankly, if I'd made her sit at home with me any longer, I think she woulda dragged me out by my tail anyway.  That's why I love her!


Everything happens for a reason.  Any regets?  Sing it Piaf.


BW xxx