As some of you know, a few months back I broke my ankle. It was a bad break, requiring surgery to pin my shattered bones back together again. Three weeks later, my crutch slipped on the kitchen floor, and I fell and broke a bone in my hand as well. I spent weeks in a wheelchair, two limbs in plaster, dependent on others to do the most basic things, like meals and showering myself.
It's all been a huge thing to have to deal with, and has seen me out of action, both generally and writing-wise, for quite a while. However, I'm gradually getting my life back to normal, an inch at a time, and trying to get back to regular writing. So I thought I'd start by talking about how I, as an aspie, found this experience. While I can only say for sure what traumatized and overwhelmed me, I'm wondering if my experiences will resonate with other aspies. So here it goes - my list of what I found hardest to deal with.
Sensory Overload. I had heard that broken bones were the worst kind of pain, but I guess I didn't really believe it till it happened to me. Screaming, puking, hyperventilating, head spinning, the whole nine yards. The pain and shock, plus all the hustle and bustle of a busy emergency department, was overwhelming. And the sensory barrage didn't stop once my ankle was in plaster. There really isn't any low-sensory-stimulus time in hospital, even in the middle of the night there are lights, nurses walking up and down the corridor, voices talking, people crying out (or snoring loudly!), buzzers going, the brip-beep of blood-pressure machines or IV pumps... And the days were of course far worse. Not the ideal environment for an aspie used to spending large chunks of her time in peaceful solitude. I don't normally shout and scream when I'm in overload, but I did have quite a few sobbing sessions, then and later, and at times veered into shutdown, closing my eyes and just letting all the noises wash over me, till they echoed and blurred together and my mind blanked out.
Even after I was discharged, there was the ongoing sensory load of pain to deal with, one not easy to manage when you're sensitive/intolerant of many medications. There were also some things I had no idea about before - who knew, for instance, that you can get a muscle cramp underneath a cast? Or how painful it can be to have stitches under one? Or how blasted heavy and uncomfortable the damn things are, or how it seems every other muscle and joint in your body, at some point or another, complains of the extra weight and strain it has to take compensating for the ones you can't use? Nor is it just about experiencing pain in the moment. After each bad bout of it, I would be reeling, and dreading the next wave, and trying to think of ways to prevent it, and so on.
And then there's the sheer exhaustion factor, because even the most basic of daily living tasks takes so much longer and requires so much more energy than usual. Of course having Chronic Fatigue Syndrome didn't help things either. (Are you beginning to understand why I couldn't even THINK about writing for ages?)
There was also the noise and chatter of the various helpers coming and going during the day. Let me make it clear here for those NTs who might misconstrue this - it isn't about hating people, or rejecting them, or even wanting to totally avoid them, or anything like that. It's about being stressed by the inevitable noise that comes from other people being around (plus of course the social challenges, more on this below), when you're just not used to it.
I have to admit that some extra sensory load I put on myself, e.g. watching a lot of daytime TV, but then there really wasn't much else to do, when I couldn't even sit at my computer desk for long, because my ankle had to be kept elevated. I'm gradually trying to reduce all these sensory inputs, even foregoing watching TV at night some nights, just for the peace and quiet.
Emotional Overload. All the physical pain and shock was bad enough, but I feel the emotional shock was and is in some ways worse. I wince now at those TV shows - "Funniest Home Videos", etc - when they show people taking a tumble. I am terrified of another fall, especially since I broke my hand. I am also terrified of steps and slippery floors, ultra-cautious on the crutches I've only just started using again, and I suspect that even after I'm long healed, I'm going to move very differently to the confident stride and pivoting I used to have. The emotional shock goes deeper than mere physical fears however. It has something to do with losing my independence, of which I'll say more below, but also to do with a sense of violation, or loss, perhaps, of the person I was before. Sometimes, especially when I'm massaging my still-tender ankle, I want to just sit and shake and cry, as though I'm still processing what happened, all the pain and fear and helplessness and so on. I don't think I'm going to be "over it" any time soon either.
I know NTs experience shock on many levels too, I'm not saying they don't, nor am I saying their pain is any less real, just that I feel I, and perhaps all aspies/auties, somehow take these things in deeper, and/or just can't seem to let them go as easily as NTs do.
Social Overload. The last few months have necessarily seen me interacting far more with other people than I'm used to - nurses, doctors, physios, OTs, X-ray technicians, social workers, other hospital staff, ACC staff, more physios, homecare workers and their supervisors, Outpatients staff, yet more physios... the list is a long one. This increased social contact, often when I've been feeling at my worst, and hence least able to 'behave nicely', has been a strain, and has taxed my ability to communicate and get along with others. So while I'm glad I live in a country where we have a national health system and all these services in place, and I know that I couldn't have managed without them, couldn't have achieved even the degree of independence I've reached so far... still, I will be glad when I no longer need all these services and people in my life. I crave peace and quiet and solitude even more than I used to. It has left me with an increased conviction that a huge amount of interaction with the world is not for me, that I'm simply not emotionally equipped to handle it.
Communication Problems. I may be fluent with the written word, but orally I've always struggled to produce the right words when put on the spot, all the more so when stressed. In those first few hours, people kept asking me questions I couldn't answer coherently. (I was so thankful to my sister, for answering for me!) Struggling to frame coherent sentences, or just to find the right words to, say, instruct others as to what I want ("put the thingy on the thingy, no, there!"), has been a continuing pattern. My brain is predominantly a visual one, and I then have to 'translate' my thoughts into words, and I just can't do it instantly.
It isn't just about being able to string words together either - it often feels like even when I do produce a coherent sentence, people seem to take it to mean something different to what I actually meant. I've struggled to re-frame my thoughts in ways acceptable and understandable to others, ie NTs. Or, sometimes, I realise I need to explain my thought processes, as they don't know what's going inside my head, why I'm asking that particular question! (Theory of mind, anyone?)
Other times I feel I'm not heard at all, as though I must not be talking loud enough, or maybe they weren't really listening. More interaction with others has meant much more of these problems, more struggling to make myself and my needs heard, or to communicate more exactly what I mean, or just to get the attention of those around me, all at a time when I've been feeling at my most exhausted and least able to get my mind round the 'right' words to get my meaning across, the socially acceptable ones that is - the rude ones unfortunately come all too readily to mind!
I did tell some of the people I deal with I'm aspie, but there have simply been too many, and too many of them fleeting, to tell everyone. And even those I have dealt with, I didn't feel they really understood what having AS means, or what effect it has on my responses to them. They do often seem a bit bemused by some of my reactions! Thankfully, no-one seemed to get annoyed or pissed off with me, perhaps health professionals expect people to behave strangely when they're in shock or pain, or undergoing treatment!
Losing control of your life - like I said above, I am glad I live in a country with a national health system, social services, etc, in place, and I know I'm going to need at least some of these services for some time to come, and I truly am grateful for them, I shudder to think how I'd have managed (or not) without them, not to mention the support of my family... BUT. But there's an inevitable loss of control of your life with them. You become dependent on these services, both physically and to some extent emotionally as well. People do things to you, for you, or with you, but you're not really in charge of any of it, you don't pay the bills or call the shots, you don't really have much power over any of what's done or who does it or when or how. You can complain of course, or ask lots of questions or make requests, but the ultimate power, it is soon clear, lies elsewhere.
When I got this sorted out in my head recently, what I want suddenly became very, very clear to me - I want my life back. I want the life I used to have back, doing the things I used to do, on my own, totally independently, and without anyone looking over my shoulder and approving or disapproving. Without anyone even around, period! I've always been stubbornly independent and private, at least partly because I hate being criticised by those who don't understand me and my life. I want that life back. I want me back.
So, as soon as I possibly can, I want to take over the tasks others are doing for me, one by one, till I no longer need their services. (Actually, I kind of have to, as my support hours have been reduced! But I am wanting to do it anyway.) I also want to make sufficient progress with my healing that I no longer need treatment of any kind. I've made some headway with both of these things, but there's still a long way to go, and I feel I'm straining towards health and independence like a dog on a leash.
And I need to be careful I don't overdo it at this point - something I already have done a bit, I must admit. I've only just been allowed to drive again, and only recently started walking on crutches again (one of them padded). Nonetheless, I decided I needed to go to the supermarket 'just for a few things', though I can't even push a trolley or carry a basket, and haven't walked any distance in months. To say I was exhausted afterwards is something of an understatement. I overestimated my abilities, or underestimated the task, or maybe both. This bull-at-a-gate thing, not stopping to really consider what I'm doing, is very much, I feel, a product of my AS, and something I have to work on moderating, for my own sake.
The flip side of that is having gotten settled into certain routines, I'm now scared to change them and do something new or different, especially on my own - even when it's something I used to do, and always on my own! Fear of the can-I-do-it and should-I-do-it variety grips me, and I can hang back from even trying. I tend to flip-flop between these two states, of fear and recklessness, neither of which is really helpful. I am, like many aspies, a creature of extremes.
So that's it folks, that's what's been happening for me, and where I'm at right now. Does any of this resonate with you? Have any of you ever -
a) broken a bone, or had some other health crisis
b) had some ongoing health situation or physical disability, temporary or otherwise, and/or
c) had to deal with health/social support services, for yourself or a loved one?
What has been your experience of them? How do you feel they've dealt with you as an aspie/autie? Did you tell people you were on the spectrum, and did you feel heard, understood, accepted, etc? Or - what? How much do you feel your experiences differed from those not AS? I'm curious as to how others on the spectrum have experienced trauma, and whatever health system you have in your country. I feel surely I can't be alone in being overwhelmed by all this sort of thing.