Some Painful Truths
0 comment Tuesday, July 29, 2014 |
I linked my blog to a friend recently, and she was struck immediately by the title which she said didn't sound "positive" enough. "You should name it something lighter and more cheerful to fit with your goals", she said. While I appreciate the sentiment, there are some distinct reasons why I've given this blog the name I have.
First of all, as a person with a syndrome that 50% of doctors refuse to even acknowledge, I have had to do my fair share of "bright-side-ism". Always having to see the positive even when my joints are creaking and the fatigue is so crushing that I just want to sit on the edge of my bed all day and weep. My son, being as he is, doesn't care whether I'm well or not - he cares about whether his video is on RIGHT NOW, whether he has his favourite lunch RIGHT NOW, whether he can do what he wants to do when he wants to do it RIGHT NOW. From early morning till about 8pm, I am going at a pace which would exhaust most parents, and I am doing it alone, pain or not. And then, when he's asleep, I work for an hour or two. That's a long day for anyone. It's even longer for me.
It is a rare thing for me to ever say to anyone just what my life is like. I don't tend to look at it too closely - it's sort of necessary to put on that Superwoman cape and put on the Everything is Fine mask to do your job as a parent. But there are things which throw the whole of my current life into sharp relief, when I have to take a good long look at just what has happened to my world - filling in DLA paperwork for my son, for example. Reading just how much of my day is taken up just taking care of my son the best I am able with every joint on fire is depressing - even more so that I don't even bother claiming for myself as I've already had the condition dismissed on one occasion as being a psychological response to being a parent and I "just need more sleep".
The simple fact of the matter is I know more about ME than my GP - and thus he has given me carte blanche to deal with my health, not that I didn't already have it. We all have the right to care for ourselves the best we are able. Traditional medicine is good at treating acute conditions, but the chronic or the "mystery", that's something one has to deal with oneself. I've become a scholar of myself - I know what foods will set off a flare, and what foods help. I know how much I can do in a day, and how much I can't. More often than not, I just have to ignore that and just get on with it anyway, but I've acknowledged that I will need to make concessions for the future - ME can be degenerative, and I've noted that some things are getting worse over the years.
I also know more about what my son responds to than anyone else - I know what he loves, I know what he hates. I know how to deal with his tantrums and when to give in, and when not to. In my son's case, because he is a child, and because he is mine, his issues are the more frustrating as the sheer lack of knowledge out there (or the "latest study" which tries to paint a broad swath over what is rightfully called a spectrum disorder) does my son more harm than good - I can see issues coming from a mile away and I can warn others of its impending arrival, but I'm rarely listened to until the explosion arrives. The lack of help for what has already been described as an epidemic is ludicrous; what good is a short break to me when there's absolutely no "break" involved? Why give me a short term flash in the pan, when I could construct something which would be of use for years? And why is it so bloody hard to CONVINCE anyone of this without extensive studies and bits of numbers on a graph when an hour in my son's presence speaks for itself?
I only have the energy to be an advocate for one of us...and because I am a parent, I will be an advocate for my son. For myself, workouts at the gym to keep me as supple as possible, cod liver oil, calcium and paracetamol, warm baths and the heater cranked to full in my room till it feels like an oven so I can sleep.
For my son, of course, anything and everything I can provide with every ounce of energy I have left, even if he doesn't realise the cost, and merely the end result. What parent would do less?
I've heard autism parenting called a "journey", an "adventure", and even "no different from raising a mainstream child." However, I am more than aware what those sorts of words are - they're self-jolly triggers. The phrases to paint on the happy smile so that one can ignore the fresh scratches and bitemarks on your face and arms (difficult before, but my son is now six, built like he's nine, and strong), the ripped wallpaper, the screams, the glares from other people on the bus or the train, the constant call-ins to the school, the complete lack of gratitude.
However, in this one blog, in this one place, I refuse to sugarcoat. I refuse to jolly-up, to paint a bright picture, to do the glass-half-full. I will not put smiley face emoticons after stories of my son getting up at yelling at 5am, as he does nearly every morning - when he isn't up by 2 (actually it's 4:41 am right now and since I'm attuned to his schedule, I got up 20 minutes before this and couldn't sleep. I hear him stirring now). There will be no discussion of "journeys" and how cleaning up after smearing or experiments with bodily waste somehow makes me a more rounded and exceptional human being. I refuse to gloss over my anger, rage, self-pity, frustration, and sorrow solely because it will make the reader feel better and less uncomfortable.
I spend a considerable amount of time being "jollied" by well meaning friends who want me to "look on the bright side" of my life. Most of these friends can't even grit their teeth to be round my son for longer than a half hour because he's too exuberant, too boisterous, too him. My house is often a mess and usually so am I. Dressing posh (or even doing my hair most days) is long beyond me. I suppose it's a bit shocking to go into someone's house and realise there's very little you can do to help, but there's a certain element to the British way of life that sees tea and putting on a chipper demeanour as the solution to all things. I find myself stammering apologies to visitors in regard to the state of my house, of myself, of my son, and it galls me I should have to. This should be my refuge away from the constant sneering whenever I take my son anywhere outside my front door. I shouldn't have to do it in my own house.
Help however isn't difficult; I don't expect anyone to wave a magic wand and solve my issues. I'm not asking for a win on the lotto ticket - I don't really see how tonnes of money would help all that much, anyway. I don't need a cure. But I could do with a whole lot less of the awkward "Well, nevermind then," mutterings and subject changes if I'm obviously having a really crap day - subject changes, usually, to more comfortable subjects like my VISITOR's problems, as after all, they tend to come to me when they're having troubles and want me to listen attentively to boyfriend troubles and offer advice.
Thus, here is the one universal truth which I think applies to just about anyone disabled: understand that the last thing I need is a pep-talk about The Bright Side. If you want to empathise with me, let me vent when I need to. It is rare for me to do, but sometimes I need it just as anyone else does. If you want to help, that's easy enough - do my dishes when you come round (hell I have a dishwasher but some days even loading and unloading it is beyond me). Fold my laundry. Do something practical; it would be a huge help, trust me.
My son has autism. I have ME/CFS. It's not going to go away no matter how many times I put on the smiley face. Acknowledging this doesn't mean that one is being negative - it can't be ignored, and shouldn't be. But if there's any question of hope...well, that's rather what the garden is for, isn't it? Making something beautiful in a rather crushing situation so the situation itself becomes bearable rather than a burden. But the cage is always going to be a cage, no matter how pretty I make it. This will always be my sanctuary away from the stares and whispers and school visits and Statement reviews and crushing pain in my limbs. I will always find the stairs rather difficult to climb up and down, and I know there may come a time when I can't manage them at all. I'm planning for the possibility, even if no one else wants to think about it. But like death, it's sort of inevitable, really. One just hopes it happens in such a way that you don't really notice.
So if folding laundry ain't your bag, grab a shovel. There's brambles to clear and a bed to be laid out, plants to choose and to lay out in the beds. I'll gild the cage till at least I can't see the bars, and contrary to the belief of some, a caged bird can be quite happy.