Weight.

So, this week a very important ‘era’ came to an end in our house. My PA whom I’ve mentioned before as being particularly unreliable for many months, suddenly sent me some rather cryptic and somewhat dramatic texts about needing to leave and get out. Nothing to do with our family, but her own, and that is all the detail I had. It was a very surreal few hours whilst trying to work out what was happening, but once it was decided and I had the information I needed for myself (whether she’d be back at work here or not), it was suddenly like a massive heap of stress had been lifted from my shoulders and from our lives. Having a PA is similar I guess to having a PA work for you in a big business, sorting your photocopying, arranging refreshments for meetings, setting up rooms for conferences. If that person starts to become more of a hindrance in not turning up, and frankly their attitude is at times a little unsavoury, you can address these issues, leave the stresses of that situation at the office and go home to relax and be separate from it. Now imagine that this is your daily life in your own home, the person not turning up is who you rely on, not for administrative duties but for ordinary things everyone does… getting food for your daughter, or helping you on and off the toilet in a supermarket, or putting your hair up so you actually look at little less hedgerow that morning. It then becomes impossible to leave anything and go home to relax, you are at home and that is where the stresses in your life begin and are sustained. Think of it like this – your arms and legs have taken a ‘not today, sorry’ attitude this morning. Now what can you do for yourself today? What problems does this cause you, what shred of independence do you still have?

I have a very caring and supportive partner yes, but he needs to be able to work full time, earn a half-decent wage so that we can own our own home, provide for our girls together and be the normal family we’d quite like to be. It’s never going to be normal, but I’ve gone on about that before and don’t want to bore you all again (not yet anyway).

I can’t explain it. I don’t want my life, our lives, to revolve around my disability; my ‘needs’ (shudder, again); what is difficult; what is possible for me to do.

But bloody hell, it consumes us.

Independence is something everyone desires, but that not everyone can have. Relying on people for things that everyone else can just do, sucks. So when that other person regularly says “sorry I can’t come in today, I’ve got the sniffles”, one can get quite pissed off. The important thing I must mention here is that of course, if someone is genuinely ill, too ill to come in and effectively ‘be my hands’ for the day, then I have no argument or problem with a person needing to take some time off to recover. We all get ill from time to time, but there comes a point where monthly (or more) bouts of ‘dodgy belly’, ‘headache’, ‘backache’, ‘food poisoning from last night’s takeaway’… gets a little tedious, and dare I say it, a little suspicious. So each morning this happens, is the start of a day where I have to disrupt other people’s days, be that my partner or my best friend who has a family of her own to care for. Of course I’m never left to cope alone, and there has always been ways around these issues with those closest to me. But being highly dependent on people never feels more stark, than when I have to get other people to fill in that gap. I want my partner or my best friend or my mum – to just fulfill those essential roles in my life, without the added job title of ‘surrogate PA’.

It’s not a desirable way to be, or a kind of life and lifestyle to envy, and the number of times I need reassurance of being allowed to do normal things (have a partner, have babies, have a job, house etc) is and will be, infinite.

Goodness, this is getting a bit deep.

The unreliability was just one ingredient in a very mixed pot of issues with this situation and I don’t need that. I can provide enough problems for myself without others contributing! Luckily for us, my new and improved PAs have stepped in and are helping make my life a little easier. Some people may ask “why the heck didn’t you address this issue earlier?” but the reality is we did, many times, to no avail.

I guess what I’m trying to make clear in all of this…actually I have no idea how to make plausible sense of these issues. I just hope in 20+ years I have worked out how to not have a problem with, erm, being the problem.

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How normal are you?

You know when you hear yourself on camera and you think “that’s how I sound in real life?!” yeah, I have that too. Except it’s never just my voice, just hearing that is bad enough… The whispy husky breathy (wait a sec, am I Darth Vader) voice that I am lucky enough to have… But I then look in the mirror as I go to put some moisturiser on and WHAT THE HELL?! Who replaced the hands I see myself as having in my head with these flipper things? What are they?! You’ve got to be kidding right… Oh no, I remember now, I remember these things from yesterday, and the day before, and the day before that. But it never becomes less weird.

Don’t get me wrong, I suffer not from amnesia but from something similar to that feeling when you accidentally sleep on your arm and then you wake up thinking you’ve suddenly been given someone else’s arm and it doesn’t quite work properly. It’s like that, except, it’s nothing like that and so much more complicated and extreme. I’m not even sure why this happens. You’d think after 27 years I’d be used to seeing my ‘alternative’ limbs and it seeming normal to me, but nooope. I’m pretty sure most people aren’t startled by their own reflection many times a day (okay some people may be) but shop windows, shiny car reflections, mirrors in clothes shops, just screaming at me “Look at you! You’re a bit different aren’t you!” I know full well that my arms and legs and their respective extremities don’t quite conform to the way most people are engineered, they don’t do what they should but I have developed some interesting and odd ways of making them work for me for some tasks.

For instance, I used to write with my right hand – that became too difficult gradually around the age of 13 when I briefly flirted with being a left-hander, then started using both hands (at the same time, yes it’s weird) to hold a pen. The same went for holding a drink or cutlery. This might all sound like jolly good fun but before I had children I started to seriously panic that they would themselves see me as odd, or that they’d copy the ways that I do things, and then be seen as ‘weird’ themselves. Luckily for me so far, neither has been true. Amélie knows that I can’t walk, “I can walk, and Daddy can walk but Mummy can’t walk… But I can walk”. At the moment this is all she needs to know, there’s no point explaining the genetic facts to her until she is interested and old enough to understand but for now she holds no judgement, no prejudice, just plain simple facts. I love the innocence with which she tells me I can’t walk but that she can, it’s almost comforting in a way. I never have to feel embarrassed by my weird methods of doing things in front of my children, whether I’m crawling to and from the bathroom in the morning, or lifting Geneviève by holding her top and vest in my teeth (now you’re shocked aren’t you) just as I did when Amélie was a baby. Only most people have and probably never will see this due to my innate fear of what they might be thinking, “ohmagaaad she’s lifting a baby in her mouth, call social services”, or the fear that maybe if something bad were to happen, I’d be condemned for my unorthodox and risky ways of caring for my children.

To other people, I’m disabled, in a category separate from the norm and from the ideal. I get frustrated by the limitations of my own body on a daily basis, it never becomes easy or normal, I often feel obliged to stick to my assigned ‘category’.

To my children, as much as I struggle with pretty much most things, I’m slightly different but entirely normal.

image

Just somewhere else to sit.

What the Devil?

Trying to come up with a title for this entry was quite tricky. I’m aware that it’s a sensitive topic, one that will always spark lots of debate between people, often within in the same social group. But I LOVE talking about religion. So when a man knocked on my door a few weeks ago in the late morning, I wasn’t not sure he was wearing comfortable enough shoes for the bumpy little journey we went on whilst stood on my doorstep.

He had come to deliver God’s message (note to God – use a courier, much more efficient)… he was trying to hand me a bit of paper and I politely said “Oh, no thank you…I’m an atheist”.
“Atheist?”, he queried scepticaly, “how long have you been an atheist for?”…” Um, all my life”, I replied.

Now this is not technically true, I haven’t always felt like I was an atheist, I was Christened as a baby, in a church in Cornwall, as was my brother and we attended a Church of England primary school where we were regularly subjected to listening to (and watching) our amply-bearded headmaster, foot upon a chair and guitar in hand, strumming awkwardly away and singing ‘Kumbayah’.

But, religion wasn’t particularly discussed at home, one way or the other and I guess as a child I kind of assumed I was supposed to be a Christian if I was asked about my religious beliefs. But come my early-twenties and then with some crucial eye-openings from a completely Atheist Tom, I finally started to consider my own thoughts in that area. I came to the sudden realisation that God had done a pretty shitty job at making sure we all believed in the same things.

The conversation with the older man at my door progressed onto the creation of the universe and all things good and bad. He was arguing that although he felt the Big Bang probably did happen (but the Earth is only 6000 years old apparently), it couldn’t possibly have just happened, it couldn’t just be ‘one of those things’, someone very powerful must have designed and created it all. He went on, to say how poverty and starvation are the fault of mankind themselves (God, you slipped up in your designs again there, didn’t you, yes) and that ‘He’ made the Earth to have enough food for every person to ever live on the planet, and it is our own fault that people are starving. That and war of course. I then queried him about things like disease and natural disasters, why does God feel the need to inflict that on to innocent people?
“No, no, those are things created by an evil being, an evil being is responsible for that”.
“Oh!” I giggled, “Who’s that then?”…
“Well Satan, the devil, of course”.

Oh crap.

“Oh, so Satan made me disabled?”
“No, Satan didn’t make you disabled…no that’s *metaphorical head scratch*… just one of those things”.

Well now I know! Thanks for that insight, you ignorant twerp, what does that even mean?

The Big Bang, life, the universe, every single thing in any place, ever, was created by God, but a simple gene fault causing disease… Just a random occurrence?

This, more than anything else (but not exclusively) is the reason I am now a comfortable and happy Atheist. Surely a God, having all that sparkly power and whatnot, would find disease just another little blip to iron out.

Unfortunately the typical response from most Christians I often hear is ‘God moves in mysterious ways’, when they are searching for a reason for the unfair things which happen to us. But not in my case. The man at my door had no answer for me. Religion has given me nothing apart from the knowledge that I am simply an anomaly.

Personally, I need to believe that nobody is to blame for the things I struggle with. My parents each unknowingly passed on the gene faults which cause my nerve disease (I got both faults, go me!). I have had children of my own knowing full well that I will pass on one of those faults to each of my children.

I know all of this thanks to science and medicine, in which I have a lot of faith.

TJB… Thank you for helping me iron out my thoughts. X.

Weirdos.

So, Geneviève is now just over 6 months old, is eating solid foods, still boob-feeding and has just started sitting up. Every new day I look at her and can’t believe just how bloody cute she is. Blowing my own trumpet there, yes, but have you seen her?! I look at her grinning at her big sister and can’t get over the fact that I made them, we made them. I’ve kept the first one alive for quite a while now without damaging her, that’s quite an achievement!

And so a new kind of era has also just begun. We’ve taken on a new PA for me, one of my PAs has over the last year, become pretty unreliable and last summer we ‘recruited’ an ex-colleague of mine who has been magnificent. She has just had a change of circumstances in her family business and so is working less days with me, so we’ve taken on a new girl to fill in the majority of my ‘care hours’ (oh how I hate social care terminology, every part of my life becomes something which needs assessing, *shudder*). She is great and we are liking the new layout of the relative strangers who come into our house every day!
Which brings me to my next point. I lead a very weird life. I really do. When you think about it, it’s just so unnatural and odd… Every week day (or weekend if T happens to be away) I have someone come into my house when we’re barely up and dressed, the house itself is pretty much still asleep, blinds closed, things turned off, bedrooms still with that glamorous ‘breath’ smell that everyone remembers when they went into their parents’ room in the mornings. Don’t pretend you don’t remember it. And from that moment when we are greeted by someone who is already ready for their working day to start, they’ve driven here, woken up and become part of the outside world again when we’re still yet to pull ourselves together. We’re kind of used to it now but it honestly doesn’t seem any less weird. I’ve had PAs of some sort since being in primary/secondary school/college and having a ‘helper’, and then graduated to having a PA in university to help me with the physical aspects of uni itself and also in my room and to do washing, cook dinner etc. Suddenly but gradually my life became not so personal any more. I had to become comfortable to pee in a room with a relative stranger, purposely making a joke about not caring about that kind of thing any more (when really I do, I’d much rather pee alone) just to attempt to make the other person feel an ounce more comfortable themselves, because let’s face it… It’s probably just as odd to accompany someone having a wee as it is to be the wee-er.
This is just the tip of the iceberg, there is so much more that I don’t quite have the stamina to explain. But I challenge you this – from tomorrow morning, grab a note pad and pen and write down exactly what you do for yourself. I mean everything. Can you reach yourself a dry towel for when you get out of the shower? Which towel? Where do you want that towel placed for when you need it? Before that, can you even get in the sodding shower and turn it on by yourself? How hot do you like it, what angle do you want the shower head pointing. Every little thing has to be mentally planned out, and if needs be, told to whoever is helping. I’m a dictator for myself, in my own home. That. Is. Just. Weird.

One more question, how much milk do you want on your cereal? Metric/imperial units of measure not allowed.