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.