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.
