Right now I’m living the reality of what happens when you spend four months doing all the things and achieving the near-impossible – when you spend days, weeks, months running on little sleep, when your ‘downtime’ consists of yet another round of proofreading or playing with InDesign, and when four hours of class is actually a break because it gets you away from all the homework/assignments/writing/endless publication production jobs. (They are endless. Trust me.) As my GP pointed out, being Student of the Year comes with a whole heap of unpleasantness: being awesome is bloody hard work.
(Life lesson: self, when you’re going to class as a break, your life is a bit out of balance. You might be loving most of it, but it is still out of balance.)
Sooner or later, you crash. It’s a hard enough job for an able-bodied person who doesn’t have any mental health challenges, and I’m neither. My conditions don’t often stop me from doing a lot of things (they make things harder to achieve, yes, but they don’t stop me, and this is not a good thing). What they mean is that I fall faster, crash harder, take longer to pick myself up, take longer to heal enough to get back into the swing of things. I don’t bounce back. I collapse. I ended up in a lot of pain for a long time and a significant worsening of my depression … and I hated and hate every last second of it, because I want to be doing everything. I’m not okay with sitting back and healing. I just feel useless and miserable, depressed and desperate, at war with a body that shouldn’t be like this (‘should’ is the most toxic word of innocent-seeming toxic words).
The crash is hard enough, but its spouse, depression, makes just healing a misery – or a challenge.
I live in a society that conveys a flood of toxic messages about pain and pills that make it go away so you can get on with your life. (I don’t watch TV or listen to the radio any more. I can’t deal with paracetamol and ibuprofen advertisements, so I just watch TV shows online or on DVD. I can’t avoid the advertisements on trains or billboards or whatever, but I’ve cut out a lot of the things that upset me, and I’m happier for it.) I live in a society that doesn’t encourage rest and healing.
It’s assumed that pain can be removed from the equation with a few ‘light’ pills like paracetamol or ibuprofen, and one can and should soldier on … with the corollary that, if one takes anything ‘heavy’ for pain, one is weak of will and/or should want to stop taking them because pain meds are bad (and always have horrific side-effects that one never adjusts to). I am told explicitly and implicitly that I shouldn’t be taking pain meds because pain meds are bad, yet I am also told explicitly and implicitly that I should take them (as long as they’re the right ones) and why the hell can’t I just pop a pill and get the job done when everybody else can as per the media? Where the hell does that leave someone like me, with pain that doesn’t respond to the ‘right’ medication? Why, the assumption that my pain is all in my head and I just need to suck it up and deal with it, of course!
This paragraph is the bind of a chronic pain sufferer. It’s the pain equivalent of the Madonna/whore complex in that it leaves pain sufferers absolutely stuck trying to live up to two flawed and contradictory ideas in how we’re supposed to live with and manage our pain that society takes as a valid, unquestioned truth. It’s why I’ve dealt with so many thoughtless comments about pain meds, and why so many people think that my disability isn’t a disability. It’s oppression.
That’s not even all.
I also come from a dysfunctional family ensconced in Catholic guilt and the need to be doing, doing, doing – where being sick and asking for a day off school got disapproval instead of concern, where an injury was never good enough a reason for a poor/off game of netball (and I got screamed at for my inability to raise my arm above my head), where my chronic pain in my ankle was dismissed as attention-seeking because my GP couldn’t find anything wrong, where my chronic insomnia was just an annoyance I needed to outgrow and tiredness was no excuse to fail at anything, where falling off a horse and being unable to walk faster than a limp was reason enough for complaining because I was holding up the family. I very rarely got appropriate medical treatment for injuries and illnesses, and I got negative, dismissive reactions when I did speak up about my body’s problems.
Like most children in that sort of environment, I learnt to shut up and say nothing.
My family did not teach me self-care. They taught me to soldier on, but they did not teach me to love and respect my body, and they didn’t teach me to feel okay at any time when my body triumphs over my determination to pretend its needs aren’t important. They didn’t teach me to love myself (and ‘me’ includes my body, although the language I use in this post reveals to me that I don’t think or feel as though my body is me as much as it is something I endure, and I dare say my psychologist would not consider this in any way a good thing). They didn’t teach me that I am valuable when I am well and valuable when I am hurt. In fact, they taught me the opposite – that love and kindness and support is conditional on being whole and well and healthy and sane.
My parents taught me that love is conditional on being whole and well and healthy and sane.
I’m bolding that because I didn’t quite realise it, in all its terrible glory, until I typed it out, and that’s a horrific, dangerous thing to have lurking in one’s subconscious.
That isn’t only sick and twisted because it’s plain horrific. It’s sick and twisted because it’s so insidious. It’s sick and twisted because society is pretty much the same way – because society tells us these messages every single day, because society resists providing equal access, opportunity and support to PWDs. Society tells us that we are undeserving if we can’t take the right kind of pill and make our problems go away. Our value is conditional on the possession of a whole body (or a functioning mind or white skin or heterosexuality or cis binary masculinity). Society is fucked. Most of us know that; many of us live it. We struggle to come to terms with that, to understand it, to work against it, to ignore those toxic messages coming at us from the media and the people we know. That in and of itself is a mountain to climb.
Family, in its most idealistic but most functional (as opposed to dysfunctional) view, is supposed to be a refuge away from society, a place where the members’ worth isn’t conditional – where we are loved just because we are ourselves.
I didn’t have that. I’ve never had that.
When people tell me that they wish they could ignore pain, they wish they could function through it the way I can, they wish they could achieve all the things through pain that I have, I want to scream at them. Scream. No, you don’t wish this because no sane person wishes everything that comes with what really is nothing less than self-hatred. You don’t wish it because I am broken, and I am not supposed to work this way, and I am not supposed to feel this extreme lack of self-love held towards my own skin that means I can gleefully work through all kinds of pain because I feel like I should just to be a valuable and worthy person. You are supposed to love your body enough to listen when it hurts, and to love it enough to let it rest when it needs it. You’re supposed to love yourself when you’re whole, and when you’re not, and when you’re never going to be whole. You’re not supposed to feel that your worth is conditional on presenting to the world an unfailing illusion of capability.
A healthy person loves themselves enough to not be in near-constant, continual pain if there’s anything they can do about it.
(This is not usually how I refer to myself with the word ‘broken‘.)
When I crash, this is what I’m fighting against. This is, in fact, why I’ve crashed in the first place.
So … I’ve been wrestling with the end of my paying journal production job. It’s been an experience in discovering all the things Word will fuck up when you have multiple users handling the one document and coping with the stress and anxiety of all kinds of problems. I’ve been preparing for Christmas, which is going to be a challenge for me. (I want to get through this Christmas and have conversations with family members like the adult I am, not the child I revert to in their company. I hate not feeling like myself when I’m around them.) I’ve been making Christmas gifts. I’ve been playing with my dollies. I’ve even been writing a little, when I feel like it.
(This post-school journey of pain and depression has been amazingly relevant for the novella I’m drafting, both in terms of my character’s subjective experience and insight into why she is how she is. I shouldn’t be surprised at this, because the Universe has done this to me many times now, and yet it still startles me.)
I’ve also taken on a (for the glory, not the financial renumeration) co-managing editorial role for a magazine, which is exciting (I thought I’d be the assistant or helper to my co-managing editor, who has more experience than I do, but no, we’re running this together, so this time I am an official managing editor). I’ve now got to figure out how to do this, study a little, get work and love myself (and my body) so I don’t land myself in a repeat of the last semester. I’m excited, though. I think this is going to be an amazing experience.
There’s many things I’ve not been doing. I’ve got a lot of things to do with job-hunting and setting myself up as an author and putting all my books up online so people can, well, buy them. I’m leaving it all to the new year. I was at a point where I was in pain after a five-minute email, where I was putting myself in severe pain just trying to do all the things I felt I had to do (and wanted to do) and I just … can’t. I have to take it slower and figure out how to be okay with that. I’ve got to figure out how to engage, in a healthy way, with the voice that tells me I need to do all the things to be a worthwhile person. I can’t keep on going and swapping a mouse between both aching hands every five minutes in the desperate attempt to fix a Word doc for publication just because I felt like I had to get it done in a week.
I’ve also got to figure out how to set realistic goals for myself. Not the goals where I see my body as the able, wholly-functional thing I think it should be and become, but the aspect of me it actually is, where its brokenness needs to be factored in, where working in pain so much of the time becomes too much to ask of anyone, myself included.
I can be in less pain if I love myself better.
For someone of my history, that’s an incredibly steep mountain.
This week I realised that I actually can’t use a pair of pliers – actually, I can’t use any tool that requires me to grip the handle using my right thumb. (A sewing needle will cause pain if I do it for long enough, but it’s resting against my thumb rather than being gripped. If I have to put force on the tool, it’s going to cause me moderate to severe pain in a short period of time.) It means I can’t make jewellery. It means I can’t de-hair my dolls and My Little Ponies so I can re-hair them in bright, rainbow, awesome colours like I used to. It means I can’t re-hair said dolls and ponies. I kept hoping that I’d get better, that eventually I’d heal, that I can go back to my half-finished doll re-root project (I wanted to give a Monster High Dead Tired Ghoulia doll pink hair to match her lips), that I can take up this part of my craft again. I can’t. I can’t use those pliers. They hurt too much when there’s other things (sewing, needle felting, scrapbooking, book making) that hurt far less or very little (if I love myself and am sensible and care about my body).
I’ve been saying that I have a disability for quite some time now, but this is the first time I’ve ever admitted that there’s something I actually can’t do, shouldn’t do, and need to, for my own health and sanity, not attempt to do. No. I’m all about ‘I have a disability but I’m going to do this fucking thing anyway’ which can be good in moderation … but is unhealthy and unloving when it comes with an inability to stop and rest or just not be in pain.
Maybe that’s my first step uphill.
There’s a liberation involved in admitting I can’t do this, though. This week I’ve been making wigs from wool and crochet yarn, because I can make wefts and sew them to a wig cap without gripping a tool. It hurts so much less to make a wig, and while a wig doesn’t look quite as awesome as a re-root job, my dolls do look fun and funky and unique, which is what I wanted. I’ll have to get someone to remove the hair I’ve stuck into Ghoulia’s head so I can go and make her a pink wig, and I’ll have to buy prepped dolls or dolls that wear wigs if I want to give them new hair, but … I can still customise my dolls, a bit.
Deciding that I can’t use pliers, instead of sitting back and waiting for my hands to heal (I know it’s not going to happen, logically, but I’m very good at railing against the universe in the hope things will magically go the way I want them), has freed me to go and play around with wig-making. It’s also meant that I can actually go and be crafty instead of … sitting back and waiting and wishing and hoping.
I’m likely going to forget this realisation that acknowledging what I can’t do empowers me to figure out what I can (all the important truths need repetition and then some to become real in the heart) but I hope I’m on the road to learning and relearning this.
I hope one day I’ll learn to love my body for what it is.