On Origin Stories 

I love origin stories. It’s not going to seem that way in a few paragraphs, but I do.

An origin story takes an existing persona and gives them shape and depth. I say persona deliberately, because it’s not just any character who gets an origin story; it’s a larger-than-life character, a superhero, a mythic entity. It’s a protagonist whose impact is so big it doesn’t fit in a single shot, so bright you can’t always look at them head on.

Sometimes, the heroes in our stories seem a little far away, a little archetypal, and you find yourself trying to fill in the gaps.

So the origin story comes along, and it fills in the gaps – what gaps there are to be filled, anyway – and one of the things I always love about them is that, while they deepen the character, they also make them smaller. Closer. Touchable. The hero takes on some of our ordinariness, and for a little while we get to borrow some of their extraordinariness. After that exchange, anything is possible. Stories have a tendency to wake up our sense of wonder – origin stories remind us that it’s always there, awake or not.

Origin stories ask: how is the hero, and why is the hero, and what happened to the hero before they were a hero?

– is there some inherent quality – are these choices that we make – does greatness always involves sacrifice – is it only heroic if it occurs in the shadow of loss –

They’re good questions, the sort of questions we ask because we know, even if most of the time we try not to think about it, that our stories are our mirrors. They’re what we believe, or what we used to believe, or what we want to believe. Stories are basically tarot cards, which don’t tell us anything about the future but do tell us a lot about what’s in our own heads.

Origin stories tell us that maybe we can be heroes, if we all start from the same ordinary place. They have an incredible, potential power. Hell, potential is their power.

But origin stories – some origin stories – bother me, as well (I can love things that bother me. I’m multi-faceted), and they bother me because they seem to be intrinsically linked with loss. Some of that is just basic story structure, about pacing and plot – because what is a story without sacrifice, without challenge, without loss, right? A story has to go somewhere, and if it just went in a straight line it would be the most boring thing imaginable. It wouldn’t even be a story, really, so much as inefficient paperwork.

I can’t quite shake it. It feels a little bit like that “Everything happens for a reason” bullshit, although not as simple as that. The loss, then the heroism, right? Not necessarily meaning heroism because loss. Correlation doesn’t imply causation.

The fact is, there’s nothing heroic about suffering and loss; there’s really nothing particularly amazing or stupendous about grief or sacrifice. Sometimes the lows of emotional pain are so intense that they’re almost highs, but mostly it’s just banal. It’s a grind. You pull yourself through one shitty day after another, and not once do you think, This makes me special. I’m basically Spiderman.

Being human comes with a minimum sadness content. We’re all going to experience these feelings, if we haven’t already; and even if we already have, we’ll probably have to hit that again, because that content isn’t a quota. There’s no guarantee that once you get through this rough patch, you won’t slip right into another one.

It’s possible I’ve been having a rough time lately.

A really rough time.

That doesn’t make me special, though. That doesn’t make me a superstar, or a hero, or anything other than perfectly ordinary. That just makes me human, albeit a human who at this particular point in time isn’t doing so hot.

Because I don’t think everything happens for a reason. I don’t believe that there’s a purpose to feeling like this. I don’t believe that calluses make good metaphors. I don’t believe that it’s a good idea to toughen people up by treating them badly.

I do believe that whatever doesn’t kill me really hurts quite a lot, and also that it often does permanent damage.

I’m that person who winces whenever the hero is terribly wounded and just barely dragging their mangled flesh machine through the climax of the story, not because it seems painful, but because those kinds of wounds are probably going to require months of rehab to get past. There will be scarring. There may be nerve damage, even permanent chronic pain that won’t respond to anything but intense, over-regulated prescription painkillers. In some cases, I’d be expecting PTSD (to be honest, that’s one of the reasons I really got into Iron Man 3. That reaction made sense to me). But it doesn’t matter, does it? Because once the hero has survived that challenge, the story ends. And it’s happy. It’s okay. It’s the end.

“There are no happy endings,” said Shmendrick the Magician, “because nothing ends.”

(don’t anyone tell the poor man about entropy, he’s had a difficult day as it is)

I can’t help thinking about what comes after The End, and of course I understand what’s behind this. Of course I understand that we romanticise things to make them manageable, and that’s also why I love romances: you can go to a dark place with the comfort of a happy ending. You can explore, and investigate, and take terrifying risks – but you’ll be okay, in the end. Because that’s how romances work. They have rules.

All stories have rules, in a way that life doesn’t, and that’s why in the end they are flawed mirrors at best. Would I be who I was, without the frightening memories I get to keep forever? Maybe not – but maybe that person would be more emotionally robust than me. I wouldn’t be able to hold a crying friend and say, “I know how it feels, I’m so sorry,” if I didn’t know how it felt; but then again, I’d be able to listen, and it’s different for everyone, anyway.

Origin stories are wonderful, and I’ll always love them. I always find a fascinating, mind-bending glory in humanising the big heroes, in watching that path from ordinary to extraordinary, in learning that maybe ordinary and extraordinary are not so far apart – but I don’t like to think that there was a purpose, any purpose at all, in my having been hurt. I can learn not to touch the hot stove without burning my hands.

This isn’t my fucking origin story, is what I guess I’m trying to say. I’m probably not going to become a beautiful butterfly when all’s said and done. I’m just a grub, like all the other grubs.

Honestly, I’m okay with that. Grubs get a bad rap.

 

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ADHD and other letters: on forgiveness

I think one of the hardest things about having ADHD – especially prior to diagnosis – is that you lose faith in yourself. This applies to any condition that includes “executive dysfunction” as a symptom, but throw in the ADHD brain’s inability to perceive or estimate time, and it’s a real doozy.

Because you know what you need to do to change.

You just don’t do it. Continue Reading

On Penelope

Sometimes, I think nothing is real until I write about it.

I’ve been avoiding this, as though if I don’t write about it – if I don’t let the feelings and thoughts come out the way they need to – then it didn’t happen.

If I don’t write about it, I can still believe that nothing has changed. If I go to that little townhouse in Newmarket, and lean heavily on the doorknob (because it got stuck, and even though her dad fixed it, we’d all been shoving it so hard for so many years that it was muscle memory), I’ll see Penelope sitting on the couch with an enormous tapestry frame resting across her lap, copper-brown hair fuzzing around her head. Behind the ever-present glasses, her eyes are quiet and focused, and her face is almost stern, an expression of an unflinching rationality that has been mistaken for coldness, for aloofness.

Continue Reading

Just Keep Swimming

I could look at my current pile of blog post drafts, or the three notebook pages filled with concepts I want to write about and untangle, the stories I want to tell – but the tight mass in my stomach says no.

It’s a thick, heavy knot of anxiety.

And fear.

And grief.

And anger.

And sheer misery.

[Edited: removed about 650 words explaining all the shit that’s going on right now, because I don’t want to read over this in the future and feel like I was wallowing in self pity]

I went to my GP for a prescription renewal, updated her on some of what’s happening, and she asked if I was okay.

“No,” I said bluntly, as tears started running down my face. “No, I am not okay. I am one hundred percent, absolutely not even remotely okay.”

I’m sorry, guys. This is the only post you’re getting this week. Maybe next week I’ll be able to knock something else up, but the truth is that severe depression and personal horror are actually really bad for creativity, because you can’t do shit. You can’t focus. You can’t think.

You just try to keep swimming, because it’s either that or drown.

You do have a choice. It’s just not a good one.

 

Declarations and Commitments

Hello from the distant ends of when-the-fuck-do-I-update-this-thing:

As it says in the “About” section (which I really should update), my brain is churning out a lot of narrative and monologue and opinion and reaction, more or less constantly (turns out: that might be an ADHD thing). I have a lot of opinions and plans and thoughts, and I think I explain things well (regardless, people have told me I do, and even if that sounds like “MY MUMMY SAYS…” from Matilda the Musical*, let’s roll with it).

I sometimes feel that the reason I explain things well is that I take the time to come up with context, and angles, and metaphors, and what that means is that my posts get very long. Settle in with a cuppa when I update this marvellous platform for sarcasm, swears and communication.

Continue Reading

“A Normal Body” And Other Fairy Tales

When I go and see my personal trainer (also an exercise physiologist), or my physiotherapist, or my podiatrist, I inevitably end up apologising for and explaining my body, and how it’s put together.

These people have been treating me for a while, and it’s also literally their job to observe how I move. They know how my body is put together. Their job is to help me move more efficiently, with less pain.

I really don’t have to awkwardly, anxiously explain that my single-leg squat is super wobbly because my right leg has quite noticeable internal rotation and the leg is permanently twisted because years of bad motor habits mean that the bone and muscle have just grown that way. It isn’t possible to correct it – merely compensate for it.

So many exercises look awful when I do them, because my leg rotates inwards. I wobble. My back arches and hyperextends unless I’m looking in a mirror (or having a really good proprioception day. I do have those. They’re amazing, and everything feels easy).

I don’t have to feel awkward and anxious, but I often do.

I keep falling into this trap.

If I do these exercises, my body will move properly.

If I keep working at it, it will work as it is supposed to.

Everything will come together as it should.

I only recently caught myself doing this, and realised how incredibly misguided this thought pattern is. I can’t blame this on my support team – they never speak to me like this or imply that they’re trying to change my body. At some point or other, every one of them has made it clear that the goal is to try and get to the point where my body can do what I need it to do, in the most efficient and least painful way that it can, given that it has a few quirks.

I’ve been unconsciously thinking (up until recently) that there’s one perfect way for my body to move and function, some ideal system that I can get closer and closer to, like the Platonic bone structure and muscle activity that will mean I’m effectively not hypermobile anymore.

Not only will that never happen, but it doesn’t even make sense to think that way.

I have multiple chronic illnesses, and treating them results in conflict between the affected systems.

Core muscle activation is an excellent example.

Strengthening core muscles is a crucial part of managing Ehlers-Danlos / Hypermobility Syndrome. This is the area where most people are a bit weak, leading to back problems and other joint overcompensations – and for bendy people, it’s much, much worse. The collagen connecting our vertebrae is just as stretchy and unstable as the rest of the collagen in our bodies and we are terribly prone to our spines moving in ways that they just aren’t supposed to (not in terms of a Platonic ideal, but in terms of load bearing function).

I also have Crohn’s Disease, and visceral hyperalgesia stemming from that Crohn’s. Hyperalgesia means “too much pain” – basically, my intestines think they’re in pain all the time, even when there’s not necessarily a proximal cause. They’ve become sensitised to pain signals because of the long term effect of the Crohn’s.

My intestines are either inflamed most of the time, or they think they’re inflamed and behave accordingly (massive oversimplification, but work with me here).

It is not recommended that you compress your core if you have Crohn’s Disease, because it will hurt like a motherfucker, and also if you have visceral hyperalgesia, that will feed the sensitisation occurring in that region.

Whenever you tighten your abdominal muscles, particularly the deeper set that wraps around your spine, you are compressing your core.

So. Whenever I try to prevent back pain, I facilitate stomach pain. Whenever I slack off on core compression to ease the pressure on my stomach, I move so awkwardly and the angle of force on my joints is such that I get back pain, hip pain and so on, and simply moving is very tiring because the whole system is just incredibly inefficient in a mechanical sense.

(I’m aware that I’m implying here that I’m fainting away from constant agony. That’s absolutely not the case! My abdominal pain is very well managed these days, and I get plenty of low-level warnings from my joints before it gets unmanageable, so I have time to get my backside into gear and start working out properly – or take a break, if that’s what is needed. It’s really not that bad. I’m just trying to highlight the conflict between the two systems)

This also happens regarding my low blood pressure. I’m supposed to wear compression garments to help with the fact that the large blood vessels in my abdomen are just a bit crap (again, due to those gosh darned stretchy proteins). Compression helps blood move back up my body from my legs, up to my heart and brain when otherwise I’d just end up with exhaustion, light-headedness and brain fog.

Mind you – and you’ve probably figured out the catch – as stated above, deliberately compressing your abdomen when you have inflammatory bowel disease can be uncomfortable. It can also hurt like a motherfucker.

So. I pace myself with the compression garments.

The human body (actually, any complex multicellular organism) is a marvel of interconnected systems and patterns. We marvel at it all the time, in awe of how the hip bone connects to the thigh bone and the thigh bone connects to the shin bone, and it’s led to a bit of a hippy-dippy idea that all these systems will strive to work in harmony with one another, if only we can find that one perfect piece of health advice.

Unfortunately, that’s bullshit.

Body parts do what body parts do, physically, in response to chemical changes and application of force. It’s physics. My spine doesn’t give a crap about my intestinal tract, and my small bowel has no sodding interest in the pain in my hips.

What is right and appropriate for one system is a stupid idea and maybe actively harmful for another.

I could feel defeated by this. I could feel that I’m just fucked coming and going. I could use it as a cover to give up, to say “Well, damned if you do and damned if you don’t, so I don’t even care anymore.” And to be honest, I don’t know that I’d judge anyone else for that response. It’s fair, and it’s human.

Instead, I had this realisation, and I found it empowering.

Because, if that’s true – if there isn’t an answer that will untwist my leg and support my spine and heal my small intestine – then here’s no perfectly healthy, functional body. There’s no perfect ideal in which every part of me will work without rubbing up against the world in some difficult way. There’s no one secret plan to make all the systems work together. You just do the best you can, and work with the systems you can. Your body will do what it can in response to stimulus that it gets from the outside world, or from internal systems; and a lot of that’s not up to you.

What you can do is try to make some of it a little smoother, a little more manageable, a little less painful and awkward.

And suddenly: that little bit that I can do feels even more significant. It’s not one small step on the road to perfection: it’s me exerting some level of control over a difficult situation and experiencing victories that are, relative to what is possible, pretty damn magnificent.

You know what, it takes the fucking pressure off.

I can stop trying – however unconsciously – to make my body normal and just make it work.

 

On Diagnosing Others: Pitfalls, Temptations, and Considerations

The last couple of years have been a glorious roller coaster of diagnosis, treatment, and rapid changes to my quality of life. I started out as a person who was constantly exhausted and in pain and unable to focus on anything, stressed and overwhelmed, watching my life slide away from me while I tried to get things done and failed, needing to rest and work out and rest and work out and everything else fell by the wayside.

It’s been frustrating, miserable, and overwhelming. It’s eaten money, and time, and career opportunities. I leaned heavily on Husband and my wonderful friends to drag myself through it all, trying to find a way to be awake, to not be in pain, to concentrate long enough to succeed at something. And without those friends, and certainly without Husband, I don’t think I’d have reached the end of this ride (not that I’m necessarily at the end, but I have all the big pieces of the puzzle).

And yet, I can’t regret it, because now I understand the shit that my body and my brain are pulling on me.

I understand it; and I can treat it. I won’t ever make my body or my brain normal – that’s neither achievable nor, in many ways, desirable (although I’d kick Crohn’s Disease out without a second thought). What I can do is find medications for the symptoms that respond to medication, and find work arounds for the symptoms that don’t.

And I still have trouble – I’ll always have some trouble – but it’s better. It’s much better.

It’s left me with a niggling problem though.

I want everyone else who has these problems – all of which can be incredibly difficult to track down and diagnose – to get help as well. I want their lives to get better. That’s a trap. Generally speaking, people need to be left to manage their own medical situation, for so many reasons. There’s nothing more infuriating than the tenth person who has asked if you’ve tried yoga for your genetic musculoskeletal disorder – and you’re lucky if that stops at ten people. People want to help, and it’s a right fucking pain.

No. Multivitamins will not fix my autoimmune disease, thank you very fucking much for your heartfelt advice.

I don’t want to be that person. And there’s a natural tendency, when you’ve just been diagnosed with a problem, and when you have a solution, to see that problem everywhere you look. You’ve been given all these hints and clues, and now your eyes can’t help but find them all over the place. The safest thing to do is to zip your lip.

But.

But.

None of these things that I have – the Crohn’s, the ADHD, the hypermobility syndrome – are rare conditions. ADHD is estimated to occur in 2-8% of the population, and symptomatic forms of hypermobility syndrome could be as high as 10% (for varying degrees of severity), and is especially common in women. The overal incidence of inflammatory bowel disease (Crohn’s Disease and Ulcerative Colitis) in the Australian population is much lower, at an estimated 29.6 per 100,000 people (although that estimate was calculated in a 2010 paper). Which makes it uncommon, not rare.

And a lot of people can have these conditions without realising it. They just know their stomach hurts a lot sometimes for no apparent reason, or their vision goes black when they stand up too fast and they get really tired for no apparent reason, and they keep injuring their back or their ankles, or perhaps that they can’t focus or concentrate and they just keep procrastinating – and they feel so horrible and lazy, because why can’t they do things that seem so easy for everyone else?

And all your test results come back normal and nobody seems to believe you. You start to think it’s all in your head.

As it happens, a lot of common issues actually require some very specific tests.

Here’s the problem.

Apart from Crohn’s Disease – which, if not diagnosed, can legit actually kill you, although forms of CD that severe will usually inspire you to get that checked out anyway – these conditions are not going to cause your actual death.

Undiagnosed, unmanaged and untreated ADHD can make you thoroughly miserable and adrift in your life, feeling like you’re wasting your potential and constantly scrambling to keep up.

Undiagnosed hypermobility syndrome can leave you an exhausted, anxious mess with joint pain and freezing extremities who sometimes might pass out, or who might end up diagnosed with an anxiety disorder you don’t actually have (despite near-constant panic), and a whole laundry list of other weird things that turn up in a multi-systemic condition resulting from a defective family of proteins that is genuinely ubiquitous in the body (I will write a post on these other effects at some point).

Undiagnosed mild Crohn’s Disease is unlikely to kill you, but constant or near-constant or unpredictable abdominal pain is a miserable thing, and I have to say, being hospitalised every year or so for recurring abscesses is no picnic. Crohn’s Disease does also significantly increase your risk of bowel cancer, so it’s something you want to be aware of.

Getting these things picked up and sorted out is no picnic. Getting an adult ADHD diagnosis can be expensive and difficult – there’s still a little stigma in the psychiatric community against adult ADHD, and even more against diagnosing women – so you need to do a good deal of research to find a doctor who is even going to be open to treating you. Very few doctors have any understanding of hypermobility syndrome or the consequences it has on blood pressure, or even the severity of the problems that low blood pressure and orthostatic intolerance can cause – so that slides under the radar, and there are very few specialists that deal with it appropriately.

They are very expensive.

As to Crohn’s Disease? By the time I’d got that diagnosed, I’d had a colonoscopy, a gastroscopy, a CAT scan, an abdominal MRI, three fecal calprotectin tests (one of which came back normal) and a pill cam. The FC tests eventually – eventually – suggested a serious problem. A normal result is less than 50. A definitive result is over 100. I got results of 92, 12 – 12! – and 376. In that order. The pill cam eventually showed my Crohn’s, and also revealed why it was so difficult to find. It was so deep in my small intestine that it was beyond the range of the gastroscopy, and – while severe enough to cause very unpleasant symptoms – it hadn’t caused the sort of scarring and narrowing that would show up in an MRI or CAT scan.

And my story – as I understand it – is not uncommon. A lot of people with more severe symptoms have cryptic Crohn’s Disease that hides away.

Not all of these tests are bulk-billed by Medicare. The specialists certainly aren’t, as a rule.

All up, I’m out of pocket a few grand for diagnosis, testing, consults and so on. Not to mention a few non-PBS medications.

The fact is that – again, except for the Crohn’s – there are ways to cope with and manage hypermobility syndrome and ADHD without a formal diagnosis and prescription medication. People who don’t know they have ADHD often do know that they’re forgetful and easily distracted, and they come up with coping mechanisms. People with hypermobility syndrome might notice they feel better when wearing tighter clothes and doing regular core strengthening exercises, so they do that. They might wear bracing equipment when they work out, because they have “bad knees”. They might take various medications for their anxiety (although they might be a bit less effective if the cause of that anxiety is a defect in collagen and resulting blood pressure and adrenaline issues).

It won’t be worth the time and the money for everyone to look into these things.

But. Maybe it is.

What can I do without being an interfering, condescending, git? Given that I’m pretty sure I have a couple of friends with undiagnosed ADHD, and I can think of five women I know who might have hypermobility syndrome (ranging from “hmm, maybe,” to “oh my fucking god, you have this, I’m not even kidding, get thee hence”), it’s a real problem. I’m fortunate that in most of those cases, I’m close enough to these people to be able to say “soooo, this made me think of you, a bit, so, let me know if I’m being a pain but I thought you might be interested…”

But if I’m not close enough? I can’t do that. It’s neither fair, nor safe. People with chronic illness – even misdiagnosed chronic illness – have enough complicated shit to deal with without having to manage my excitable interest in their condition (unless they’re a close friend, in which case for the most part they’ve already signed up to the “Kate is a biologist and gets excited by weird shit, just roll with it until she shows us another cool picture of an octopus.”).

So.

In those cases, all I can do is what I’m doing now.

I can share my experience. I can write about my symptoms. I can write about the symptoms that I, personally, don’t have, but which occur in other presentations of my conditions. I can share what I know about the diagnostic process. I can be open about medication, and be willing to answer questions.

And, sometimes, when I say “…and then that happens…” and someone blinks and their mouth drops open a bit and their response is, “Huh. So that’s not- that’s a thing? That… oh. Wow. Hm.” Or sometimes, they just laugh at me, and say, “but everyone gets that, that’s normal,” and when I explain that actually, no, not so much, there’s another jaw-drop moment.

Then I can direct their attention to resources, if they’re interested, or leave it alone, if they’re not, and they want to process for a bit and do their own research.

This is the best way I can help, without being a git. To talk about myself, and tell my own story, and make it clear that, if you’re concerned, you can ask me about it.

And to talk about how much fucking better life is when you get decent diagnosis and treatment, all the way from being in less pain right down to feeling less like you’ve been going mad because all your test results were normal and you thought it was all in your head.

Chances are it’s not all in your head.

You deserve to be listened to. You deserve help.

Ask away.