What a pity

I’m going to guarantee you something. It doesn’t come with a warranty but I fully stand by it. Chronically ill people never want your pity. It’s like a hand-me-down emotion that’s ill-fitting, uncomfortable, offensive… in the way lycra was in the 80s. Seriously, it’s a material pretty much exclusively meant for cyclists and gymnasts, not recreational wear. But I digress. Pity is like the unwanted fluro green leotard of human responses. No one wants it and if they do then there’s no accounting for their proclivities.

80s lycra outfit

Pity is a hierarchical perspective that is disempowering. It makes the pitied small and feeble. It’s a destination judgement with no embedded virtue. It makes a person, in all their complexity, one-dimensional. “Oh you poor thing. How bad your life must be. I feel so sorry for you.” There’s nowhere to go except some sad, desolate little island for unfortunate souls. But who gets through life unchallenged in some way?

easy street

In reality we all visit that island at some point, some of us just seem to spend longer sipping the sour coconuts. It makes no sense, we don’t seem to have a whole lot of control over it but pity is basically the jerk who sails by on a cruise ship and shouts through a megaphone: “Wow guys, I’ve got these fancy binoculars and I just noticed those coconuts look really old. That sucks. What you’re sucking, sucks. See ya, suckers.” Then sails on by. Ok, so people generally aren’t that cartoonishly flippant, but I’m taking some artistic license to illustrate my point: that pity is pointless.

no pity

That said, sometimes pity gets a bit kinky and likes to dress up as concern or even kindness. Do not be fooled guys. This is the emotional equivalent of the wolf dressed as granny. Pity is neither of these things and I’ll tell you exactly why. Both concern and kindness engage with a person as a whole being. There is an expression of interest, an investment of energy that creates a positive connection. Pity does not, can not, do this. Why? Because it is proximityphobic, a word I invented to show off my syllabic range but basically means it looks from afar. Sometimes pity approaches from above but it makes sure to never get too close. Pity has the veiled yet very present instinct that somehow, just somehow, misfortune may be contagious. We don’t like to get too tactile when we’re administering our pity.

don't touch

And you know what? The pitied person feels this. If pity is expressed towards them (no closer than a few arm lengths away of course) it leaves a sickly sweet sort of rotten feeling in the throat. Perhaps the fermenting of an unexpressed reply “…I wouldn’t choose this …but…I’m more than this situation.” Words that are swallowed because pity is dressed up as an acceptable social nicety that we should not only accept but be grateful for. Well today I’d like to say “No.” Pity is pointless. Put it on a t-shirt. Tell it to your kids. It’s the cheap knock-off of concern and kindness. It only wishes it was empathy.

kind elephant

There is no such thing as well-intentioned pity, that’s an attempt to falsely appropriate the true concepts of concern and kindness. We often say that someone is self-pitying when we think they’re too stuck in their own troubles. When it’s one person removed and a third party it more obviously takes on it’s true form: ugly, unproductive, a terribly pathetic life sentence. Paradoxically it just takes some real concern or kindness to see that self-pity is in fact sadness or grief being buried beneath a harsh misnomer.

bunny ears cat

(Pity would tell you this is a rabbit. Don’t trust pity. It’s shallow and doesn’t know what it’s on about…)

In closing my case I would like to say: Pity is a dead end. It’s an unpaved, potholed, cul de sac in an abandoned, remote, uninviting town that you only came to through a glitch in your GPS. By actually feeling the full spectrum of emotions (it even has the word motion in it guys, this post is writing itself) we are then able to move forward and grow. At times it may look pretty bad from the outside but anyone worth your time will step closer if they care. None of us get to do life without things getting a bit messy from time to time (ok, sometimes a lot messy amiright?!)  and that means we take a trip to murphy’s island (he got tired of legal practice and never winning any cases due to insanely high odds of bad luck and sought privacy on a remote island but wouldn’t you know it, all these other people started showing up…seemed despite going into retirement Murphy’s Law followed him) and it does suck. Cruise jerk is 100% right about that but that truth has to be separated from the toxic seeming expression of care that pity is.

Joy, happiness, sadness, grief, anger. It’s all emotion and that’s natural. That’s what makes us fabulously un-one-dimensional (syllables again, can’t help it) and real. So I’m gonna let a little 90s Mariah take this post out. If you know me and you’ve read any of this blog previously, you know I have a 90s music thang. So here it is, enjoy, and don’t foist your pity on others AND more importantly don’t allow anyone to foist the label of self-pitying upon you. Chuck that shit away like it’s a hot potato.

Here’s one more guarantee. You will get off that stinkin’ island…but not before carving your name in the coconut palm. Because overcoming misfortune makes you a bad mothertrucker and that shit deserves commemorating. I’m betting there’ll be some truly kind people who you meet there too and those who are excited to welcome you back. The ones who’ve been sending you letters in glass bottles that wash up on the shore, by carrier pigeon or sky-writing just to let you know they care. These people don’t pity you because they know that we’re all so much more than our circumstances. Fortune can be fickle but we can always choose to be kind.

internet fist bump


Shifts in the storm

storm clouds
Being Sick feels like being ‘othered’ in a world of comfortable illusions suddenly made starkly visible.
A cache of potentials carried heretofore lightly in the heart, and mind, become indisputably redundant. Life narrows. But it does not end. Not before the realisation of this new state has turned from a dizzying, swirling storm…and settled itself into weary resignation. Perhaps occasional acceptance. A periodic fling with peace, not a long-term commitment. That’s for the enlightened few.
Strength and frailty lose their binary distinction. If you go far enough into one, you can touch the other. This is true.
The membrane of perception holding us each in our distinct selves is surprisingly malleable. If punctured it heals, though never quite the same as before. Sometimes a large gash inevitably leaves a scar. It’s the crater from a meteorite, the impact that cannot be undone. You find yourself shape-shifting and no-one is more surprised than you.
If it could be a sensation, becoming un-well should feel like an adrenaline jolt startling you awake. But it isn’t. No. It’s a sleight of hand. The apparent framework of reality goes on around you: people living, time passing, the seasons, socially sanctioned milestones of ageing. The world looks the same but make no mistake, you are changed.
Even you are fooled at first. Maybe it didn’t happen? Where are the aftershocks? Where is the mirroring back from your environment in recognition of what is happening? It takes a period of consolidation to internally integrate this imposed transformation. Tick tock. The storm rages silently while you try to read the stars, but you will find there is no way home. It doesn’t exist anymore.
Otherness pervades. It seeps through, contaminating every former sanctuary of your old life. People beyond the confines of your own skin haven’t witnessed the storm. They don’t know you’re lost, what you’ve lost. It’s everything, everywhere, because it’s you.
For a time you convince yourself that you can find your way back by choosing to participate in the illusion of beforeness. It’s a forgivably, seductive fallacy. You pack fresh soil into the crater, cover up the scar but there’s still a ball and chain clasped to your ankle. It’s so heavy and restrictive but if nobody looks down they won’t know. So smiling, laughing, it’s not just you who adheres to the refrain: ‘Just keep looking up!’ You may look ok, be ok, from the neck up… but you can’t escape what is happening.
To be more sincere with others you would need to bridge a mighty gap. You’re not sure you have the resources to undertake such a task. How do you begin to describe the storm? Is that what it was? You don’t feel sure. It’s more than an ill wind. More than grey skies. Perhaps a succession of lightning bolts, or sinking sand? No matter what you try, it defies definition.
So you don’t try to explain. Without explanation and understanding the social chasm can’t be breached completely. Your performance of your old self is a tacit consensus, for the purpose of comfort and continuity. It serves both you and them. You’re leading a double life rebuilding yourself from pieces of all you were before the storm and all that’s left. You’re the magician and this is the show of your life.
There are a few who come very close to knowing the chasm, from their own experience, but the alchemy between person and tempest is a special sort of recipe that produces results as variable as the circumstances and individual people involved. You learn that some things cannot be completely shared but this does not mean you are alone.
Reality and unreality reinforce one-another as you are repeatedly visited by vivid, tangible experiences you could not have conceived were possible. Their peculiarity nags at your attention so that you become preoccupied by uncertainty. It’s impossible to become complacent. Another binary melts into itself and you wonder what you know? What do you really know?
But you do know one thing: You’ve changed. You are a different you. Not better, not really worse.
You know another thing: Life isn’t concerned with identity constructs or plans, it’s wild and incomprehensible.
And you know more deeply now than ever: The love you hold for your life is utterly fearsome. It’s a white hot rope that blisters your palms as you hold on tight, an inferno of steely intent and deep seated resolve to not let go.
Maybe that’s the shift. You got broken, lost, drenched and whipped repeatedly by gusty changes so you could feel it: the full strength of your love for life.
stood in storm quote

The pent-up vent

*From my personal Facebook page just prior to Christmas 2016, the anniversary of one of the worst experiences of my life and the impetus to get a few things off my chest*

Less than an hour ago I felt I like my heart was trying to escape my chest for four very unpleasant beats. I’ve had palpitations plenty of times before but this was different. Called Nurse on Call, they told me to go straight to ER.

I’m more afraid of ER than I am of having a heart attack.

So we called my Dr, who also works rurally in ER a few times a year aside from consulting with patients like me, he answered his personal mobile phone after 9:30pm and at no expense to me explained the reason for what I experienced and why, crucially, it was benign. Once we were reassured, he wished us a Merry Christmas and told us to contact him throughout the holidays if we need anything.

Plenty of Lyme deniers call Drs who choose to treat this illness charlatans or opportunists. My Dr is neither of these things. I trust him with my life. My trust is not easily won. He chooses to work with some of the most complicated, maligned ‘heart sink’ patients in the face of significant professional opposition not for money (I’ve heard him take a call while I’m in the office and arrange to personally cover the costs of a patient’s scan), certainly not for glory (there is none in this field) – but because he cares.

He’s bloody smart too and keeps his cool in a crisis. When I came home from my 3rd trip to ER at the start of the year feeling like my body was shutting down and being told I have psychiatric problems, I wasn’t sure how I could keep living. It was torture, but torture the medical personnel I encountered at hospital told me I was somehow conjuring in my own mind. That’s a colossal headfuck. Just imagine feeling sicker than you’ve ever felt, terrified and at your most vulnerable ( more than you even knew was possible) and then being told by the medical staff entrusted to your care that you’re crazy and not nicely, but with condescension and amusement.

When I got home my Dr spoke with me for over an hour, explaining why my body was convulsing uncontrollably, why I felt too weak to remain upright, why? Sure enough once we started treating properly (I’d been on a hiatus due to surgery in the preceding weeks) this calmed down enough for us to be able to make the impending move interstate. A move we were making to be closer to support networks as it became abundantly obvious that this bloody illness was digging its claws deeper into me and we couldn’t manage on our own anymore.

As brilliant as my Dr is, it shouldn’t be this way. No patient should feel afraid to visit ER. No person should be mocked for presenting to ER, especially when they are courteous, cooperative and genuinely ill. I was in tears telling the staff, as they looked at me bemused “I’m not trying to waste your time” – it didn’t matter what I said, their minds were made up.

It didn’t matter that I was genuinely ill and my blood tests proved it, because I mentioned Lyme upon admission, anything I said thereafter meant nothing. I must be crazy. In fact I had low potassium – I needed to be in hospital but when they took the next step and cannulated my hand and ran IV potassium into my veins they left it undiluted (not proper procedure). When I complained that it burned like acid (which it is known to do) they tossed me out.

I now take potassium pills 3 times a day and I rely more on a phone call to my Lyme Dr than I ever would on ER. Experience has conditioned me to be this way – and it’s wrong. I wish I could trust the system but my last experience nearly broke me and I don’t think I could do it again.

Maybe I’d have a better experience if I ended up in ER again the next time but from what I hear from others sick like me, this is the norm. In fact the senate submissions on Lyme-Like illness are filled with stories like mine.

All manor of crazy torturous symptoms are wreaking havoc in bodies across this nation and people are genuinely suffering but they’re not going to hospital because they’ve had the same experience: if you go and mention the ‘L’ word it’s a surefire way to be labelled a nutcase and then be faced paradoxically with the challenge of not becoming one as a result of basically being unwittingly gaslighted. Unwittingly because these staff believe they’re right, how could they not when they’re working off the information and training they’re given and it’s sorely lacking. When you find yourself really sick with something unrecognised it’s a terrifying place to exist. I never thought it possible to live like this.

A few months back my arms were so weak that they effectively became paralysed and I could not move them. Someone could have put a cigarette out on my forearm and I could not have stopped it. I started sobbing. We called an ambulance and even then when i didn’t know why my arms had stopped working I refused to go to hospital. I’m not saying this to try and illustrate how brave I am, I didn’t feel brave, I’m trying to illustrate how extreme my fear of ER is – it is worse than losing the capacity to move my arms, it is worse than my heart bursting out of my chest, it is worse than uncontrollably convulsing. To date all of these extreme bodily experiences have abated in time but on some level I am always vigilant, I can never completely relax treading this fine line between experiencing more horror than I thought possible whilst simultaneously deciding whether or not to seek help through our medical system.

I know the science on tick-borne illness isn’t conclusive yet but from what I can tell the clients mum sees through her work (injecting drug users) are treated with more compassion and courtesy than those of us with tick illness. I believe drug users deserve that courtesy but so do we, everyone does. I understand compassion fatigue, and fatigue in general, are common in an ER setting but, fuck, if I could switch bodies for a second with treating staff it would solve a whole host of problems in an instant.

My mind isn’t the problem, my threshold for fear and pain is much higher now to the extent that when I had my port placed surgically and they couldn’t cannulate my hand (shit veins) they had to administer the anaesthesia via needle directly into my neck. So that’s like the needle at the dentist but in your throat. I didn’t flinch or react at all, I’ve trained myself to be accustomed to so much more than that but the surgeon joked “you’re so relaxed maybe we don’t need the anaesthetic”. I wasn’t relaxed, I was controlled and this self-control is largely what keeps me going.

But we all have our breaking points and for me that’s feeling like I’m dying and being told I’m putting it on.

I look forward to the day when it isn’t like this for Lyme patients. I look forward to the day when we can finally get past the ridiculous assumption that people presenting with this illness are somehow complicit in their own suffering, that they *want* it for some perverse reason. Live a day in our skin and you’ll learn exactly how absurd that notion is.

If you’re on the fence, just consider, if we’re telling the truth and this disease is real and as devastating as 1000s of people say it is, *if* we’re right, what a phenomenal shame that is. What a stain on the integrity of our medical institutions. To leave a large group of people genuinely suffering through no fault of their own to fend for themselves, and when they seek out help, to treat them like trash. When the cogs do click into place, and the balance of social perception tips (as it inevitably will one way or another because this is real, it’s just a matter of time) in favour of patients as all the missing puzzle pieces come together, the shame will be real. And I can promise you, it will not be patients feeling it.

Lyme is not a punch line

Just this week Meryl Streep used her powerful platform as winner of the Cecil B. DeMille award at the Golden Globes to call attention to President Trump’s public mockery of a disabled journalist. It went viral and clearly struck a chord with people everywhere. The emotion in that room when Meryl spoke, was palpable. Not just because she’s a seasoned, veteran cinematic performer, but because it rang so true. In a gleaming gown in a ritzy room, this icon of the Arts chose to venture into the seedy underbelly of the current socio-political zeitgeist. Her expression was at once steely and highly emotive. I felt it. Millions felt it. Silently there was a sensation of consensus: it is categorically wrong to mock somebody who is physically suffering an ailment through no fault of their own. Meryl used an example of this precise act as the vehicle with which to paint a chilling character portrayal of the soon-to-be President of the USA.

So, politics of the day aside, what does it say about us if we tacitly accept the mockery of an ailment? You’re thinking, “well no one in their right mind would do that…” If you thought that, then I’m sorry to say you’d be wrong. While most all diseases and ailments are off limits for mockery, there is one that is considered fair game.

Now tell me, do we feel comfortable with jokes about:

“No! What kind of heartless monster are you?!”

“Heck No. I’m concerned for your soul.”

“Seriously, what is your problem?”

Multiple Sclerosis?
“Just not funny. Please find your moral compass because I’m afraid you’ve lost it.”

Lyme Disease…
“That’s the fake illness that’s in fashion now, right?”
“What disease? Is it a citrus allergy or something?”
“I’ve never heard of it before so I’ll LOL because compassion only applies to things I am specifically familiar with!”
“I had that, got treated early and I’m fine – those Chronic Lyme whiners need to get over themselves!”

Can you pick the one that doesn’t fit the pattern? Hint: I made it ridiculously obvious because I’m trying to make a point.

Full disclosure: I have Chronic Lyme Disease A.K.A. License to be abused by (most) medical staff Disease A.K.A. Wreck your life Disease A.K.A. You’re a crazy, lazy, liar Disease (did I mention crazy??) AKA your bank account is now empty Disease AKA just forget the things. All the things you held dear. Forget them. Disease.

It’s a great disease to have, ya know. I love how there’s no definitive, universal testing, treatment or diagnostic guidelines. It’s like finding a Willy Wonka’s Golden Ticket just to get a diagnosis at all. Should I celebrate? I don’t know. I love how I’m met with blank stares and occasional accusations of malingering from friends and loved ones with whom I previously enjoyed functional relationships. Who needs social acceptance anyway? It’s not like humans are hardwired to be tribal and interactive, I’m a happy little island. Another advantage to having Lyme is being accused of making an illness up, that’s a whole new level of creativity I never knew I possessed. The best part, though, is feeling like I’ve been hit by a Mack truck every day with the worst hangover of my life, limbs filled with cement and a ‘technical difficulties’ sign permanently plastered where my cognitive function used to be. Really, it’s amazing, you should try it.

Lyme Disease! It’s like all the other horrible diseases with none of the recognition. Guys, pro tip: if you want to fake an illness but you don’t want to make it too easy then I really urge you to consider Lyme. It’s hotly politically contested with two warring medical camps offering completely opposing views on every aspect from how to define it, how to diagnose it and how to treat it. There’s no financial subsidisation through the mainstream medical system. You’ll enjoy bemusement at best in medical offices and ER departments, at worst outright abuse and accusations of psychological problems. But the best part is that treatment itself makes you feel much, much worse before you can get better due to the Herxheimer effect…and treatment, once Lyme is disseminated and at late stage, lasts years. Yes, say goodbye to: your career, your social life, your independence, in many cases your love life. Say goodbye to your previously unappreciated yet inexplicably wonderful ability to seamlessly coexist with life.

For those who are still considering this illness as a contender for your faked ailment, please be assured that this new so-called ‘spare time’, often coveted by others, is thoroughly unenjoyable. You will very quickly learn that wherever your body goes, so do you. Reread that if you have to. Your body is no longer a friendly place to be. No amount of spare time will change that. So please reframe your concept of free time accordingly. There will not be luxurious baths with champagne flutes within arms reach, there will not be hours devouring every novel you’ve been recommended but too busy to read (your brain: it just won’t. It can’t), there will not be snacking on all manner of treats while watching endless movies (your body will no longer tolerate many foods including but not limited to: alcohol, gluten, lactose, fructose, coffee, refined sugar…etc. it’s a pick-a-mix of dietary issues, everyone is different!). There just won’t be the fun. Any of it. Get used to this if you have your heart set on feigning this disease.

So, all that didn’t put you off and you’ve somehow contracted a cocktail of protozoa, bacteria, possibly viruses (I say somehow but you were likely the unwitting lunch for a tick, you know, those cute little crawly blood sucking cesspools) and you’re wondering what the hell happened to your life? Welcome to Lymeland, friend. It might feel lonely initially as your existing friendships dwindle and you find your new primary relationship is with inanimate objects: to be clear, that’s the couch and your bed. The shower if you’re lucky but really it’s more like an awkward third wheel in your love triangle, sometimes you visit but you’d never choose to leave the couch or bed for your shower full time. It just doesn’t meet your needs like the others, ya know? But loneliness is an illusion. Yes, you heard it here first. Why? Because there are literally thousands, probably millions, of people like you out there.

Maybe that’s why Lyme Disease has caught the ear of TV screenwriters in recent years. I know this because one of the fallouts from falling ill is a very real need for distraction. Your body is a cage of horrible sensations that seem to be allocated arbitrarily by some terribly spinning wheel of symptoms, I imagine possessed by a really perverted omnipotent gameshow host in the sky. What’s his deal anyway? So, I was watching two contemporary, generally critically well-received, upbeat TV shows. I can’t watch medical dramas anymore despite the binge-friendly high episode count. I know, it’s a tragedy, but guys, my life is a medical drama.

First up: Crazy Ex-Girlfriend, the show with the refreshing anti-heroine with possibly the most intense nostalgia crush of all time. It’s great, there are musical interludes, I like it. When you’re sick and your body feels like a prison, often your eyes and ears which still may not be 100% functional (but we work with what we’ve got or we stare at a wall or the palms of our hands and really how long is that going to last before insanity actually occurs as a secondary bi-product of sheer boredom and existential angst? So, TV good. Yes.) are the only means of escape from the immense shittiness of your reality. In this diversionary outlet Lyme Disease was used flippantly which wasn’t so bad, but wasn’t great either.

The second show was Brooklyn Nine-Nine, again a charming, light-hearted series involving the antics of the quirky cast of characters in a police department. I specifically turn to shows like this when I feel dreadful. Let me clarify: when I’ve been having problems moving my arms, or talking, or my whole body feels like a phone on vibrate, or I’ve got uncontrollable whole body convulsions, or my heart is going off-script and doing all sorts of fancy beats that I appreciate are original but I really wish it wouldn’t because sometimes it makes me wonder if I might die. I long for the days when it just did its thing in the background. But those days are about 5 years behind me at this stage and I digress, so I turn to shows like Brooklyn Nine-Nine to make me laugh, give me respite. It’s my happy place, only to be rivalled by all the kitten fan groups I’ve joined on Facebook. My newsfeed is amazing, it’s like an adorable virtual cattery. Then just when I’m feeling better one of the characters on Brooklyn Nine-Nine makes a joke about Lyme Disease. Some invisible character not significant enough for a walk-on roll is described as claiming to have Lyme but, according to one of the lead cast, she must just be “depressed because she lives in Reno”.

You know who’s depressed right now and totally not in Reno? Me. And every other Lyme patient out there who saw that episode. Let me quickly rush in to qualify that it’s situational depression. We Lyme patients have to be so careful about admitting any kind of mood change lest it gets pounced on as some unlikely retrospective explanation for all the serious physical manifestations we have of what is, frankly, a very real illness. On a scale from the global reliance on fossil fuels to unicorns, Lyme often gets sold as being closer to the unicorn end of the spectrum but we are about as sooty as the exhaust from all the cars in China. We are real, Lyme Disease is real. Despite this, rather than being able to focus all our energy on getting well we simultaneously end up running a sort of defensive sanity PR campaign for ourselves; trying to be unnaturally cheery and inoffensive in a sort of hypervigilant attempt to attain credibility. The ludicrousness of this dynamic I think is inherently obvious. Let me put it this way: are you perpetually even-tempered and happy? No? Well watch out because that could be grounds for a psychosomatic Lyme diagnosis. Have fun with your newfound medical ostracisation.

So let me track back to the start where I spoke about Meryl Streep. Let’s just take a moment now that I’ve brought her back to mind to just sigh in collective appreciation. She really is a marvel. She makes a damn fine point too about ethics and character. Mocking or laughing at any ailment that has befallen another human being, whether immediately physically obvious or not, is abhorrent. I saw tears in the eyes of many revered celebs when the camera panned across the beautiful, shiny Golden Globes crowd as Meryl’s words touched their beautiful, famous hearts.

Is it unreasonable, though, for me to feel a hint of dejection watching this scene unfold? Agreeing wholeheartedly with her sentiments yet seeing something that undermines it playing out in well-written, entertaining and perfectly cast TV programs. It’s a bitter pill to swallow, and trust me, I swallow more than my fair share of pills. So here’s my request, my plea, not just for myself but for the many people out there who are only just getting through the day because they have Chronic Lyme Disease. Mums, Dads, Husbands, Wives, Colleagues, Kids, Friends, Lovers, all ages, all races, all around the globe. Lyme Disease is greedy, it doesn’t discriminate and chances are someone in your social circles has it, or sadly with the rise in cases annually, will have it. Awareness is amazing and TV can be a fantastic medium for that, but let’s not kick people, suffering from a debilitating, real illness, while they’re down.

They say laughter is the best medicine, and that’s true but Lyme should not be the punch line.


Contraction, expansion

What do I want to say today?

I do a lot of listening, scanning Facebook, reflecting. Absorbing rather than expressing, until some impulse strikes and I feel the urge to lay some thoughts down.

I had an idea last night, or rather in the early hours of the morning (which is when my body has reset the onset of sleep to, for years now – despite medication, supplements etc.) so I came here. It’s like the quiet and sense of solitude thickens in the early hours. The saying goes, ‘Life abhors a vacuum’, and my mind seems to bubble up with notions moreso in these hours.

You know though, I can’t remember what it was! Sorry. But isn’t that the way of things, ethereal and dynamic? Every moment holds the potential to birth anew, a state of mind or circumstance.

Even being stuck mostly on the couch for so long now, I can appreciate this. Perhaps more now that life has slowed to a snail pace, at least in external life terms. Like the slow motion sequence in a film, this slowing affords a closer look and therefore more appreciation of the subtleties of a situation. This can be painful and exquisitely beautiful in turn.

Before we moved back to Melbourne in March of this year I spent two years in fairly intense isolation. I was in a town where I knew no-one, where I was too ill to involve myself in any sort of social groups to change that and where I spent 90% of my time alone at home, the rest with MB outside of work hours or at medical appointments.

My companion was my laptop and my lapcat, who passed away from bone cancer at 17 in April. This was enough, not always, but most of the time, and when it wasn’t I endured anyway because enduring is just time spent bridging between difficulty and non-difficulty. So far non-difficulty has always shown up eventually.

When it got really challenging and I felt so disconnected, floating in my consciousness bubble, caged in a body that seemed so weighed down by illness and incapacitation, it stretched me. I thought about situations where other people may have experienced such protracted solitude. I thought about mountain climbers, scientists living for months in Antarctica, of spouses who relocate to foreign and strange lands for their partner’s work, and I felt less unique. Any self-pity that could have festered was nipped in the bud.

Perspective is immensely powerful. Loneliness and feeling disconnected can happen in a crowded room. It can happen when we feel insecure or out of touch. Being alone, by contrast, can be a deeply rich experience. I know this.

So how has it felt to be back in my home-town where old friends are around, where old threads are reinvigorated? Relief, self-doubt, expansion, confronting, busy, energy exchange, heart-opening, grief, joy, external rhythm, connection.

I can’t say it’s better or worse, but it feels healthier. Initially I felt very out of step, socially retarded. I feel like I’m going through interpersonal rehabilitation. When I try to articulate this my friends assure me they can’t see it, but I feel it. I’m aware of my own awareness, which is uncomfortable, like when you become overly conscious of previously inherent bodily functions like blinking or breathing. The awareness of the gap between my old social self and where I am now makes what was so natural feel awkward, almost contrived.

Fish out of water.
But the water was stale.

I’d like to say this time of solitude led to some sort of meaningful distillation of self. That it held purpose. I believe this sometimes and other times I believe that there doesn’t always need to be a reason or tidy way to sum up life experiences. Maybe I need some more distance, a length of time between then and now that is more vast in order to see more clearly.

Sometimes shit is just hard. Maybe it doesn’t need to mean anything but it did show me a sort of strength I previously didn’t know I had – or capacity to endure. Again I compare my experience to others, historically, people have endured far more: solitary confinement in a penitentiary institution, being a prisoner of war, protracted domestic violence, slavery.

In one way or another we all come up against something that tests us and asks us to stretch.

When pushed, the capacity for human endurance is awe-inspiring. I’ve only tasted it from one facet and I look to examples of others’ endurance to fuel my own. I think it’s a beautiful quality to face hardship each day with a measure of faith, a little flame in our hearts that refuses to extinguish.

I think deep down we all know how precious our life is.


Silver linings and insights

I’ve just read through all my blog posts. I do that a bit. Fan of my own work? Not so much. I have always done this with any outward expression I put out ‘there’ that is more than superficial. It’s a sort of critique and a refresher of thoughts and feelings. That doesn’t really sum up why I do it properly. I don’t know exactly. I’m a perfectionist. A uni friend once nailed it saying “it’s like every word has to audition for its place with you”. I felt quite disarmingly transparent when she said that but it was true.

It’s not for others but for myself, it’s about making the bridge between my internal impressions and the words I write as narrow as possible. It’ll never be perfect but I can translate myself into language to the best of my ability. It takes me back to studying the origin of consciousness for an Anthropology subject at University, that whole thing about whether we can ever connect or know the world outside of our own perception, how subjective we are…blah blah. I want to get to the essence of a feeling or thought and catch it like an ethereal butterfly and make it real on the page. I want to make the intangible communicable. I don’t know why I want this so much.

So in rereading the blog now, what I’ve noticed is that I repeat myself a lot. I feel insecure about my lack of exciting external events to discuss, then I feel a sort of self-affirming sense that it’s actually okay because I sincerely believe anyone who I compare myself to and I paint as ‘being more interesting’ (or whatever aspect I fall short on in my own appraisal), if they went through what I am going through they’d probably feel as I do. It doesn’t matter who you are, if you get stuck on a desert island with a stick and a piece of string there’s only so much you can do with it. Why compare yourself to those in the thriving metropolis visible just across the ocean? But I do. I believe you would too. Maybe you do in your own way. Comparison is the thief of joy, isn’t that the saying?

Anyway there’s two things I want to say in this post:

  1. I can see a clear shift in my tone of writing before and after my ER admissions at the start of this year. In some ways this blog has bookended one of the most intense experiences of my life. That’s interesting. This is history – my history. I can’t seem to get back to the light-hearted tone I had before. But that’s okay, we can’t force ourselves to feel what we don’t. What I experienced was traumatic and trauma takes time to process.
  2. I want to mix things up a bit by deliberately flipping this post around to elucidate the things I’ve learned and the silver linings to this experience. Because there are alchemical shifts that have occurred in me that simply would not have been possible without this…whatever it is. Coal, pressure, diamond. You know the formula. I’m not saying I’m better than anyone because of it but I believe my insights are worth sharing so why not have at them, here. Yeah? Ok. You got it.

Okay, why I feel the urge to keep wrenching my chest open and writing about it publicly, I don’t know. At times I’ve thought if I died what legacy would I leave, would I look back (from wherever it is we go) and feel I had been authentic, brave, true, honest? What is there to be afraid of aside from rejection, judgement, misunderstanding, ridicule? If I’m honest, really honest, I have no reason to fear those things. Because that would be to deny who I am and in the end doing that just stifles me (and any of us who are slaves to the fear of those things) and who wants to look back and feel they censored their own life when there’s really no need. I had this great conversation with an acupuncturist once who I came to see more as a friend and confidante and he said that you can never please everyone. The world is too fragmented and diverse, with as many opinions to match. But even if 1% of people like you or agree with you, that’s a lot of people so why try to win the approval of the world? It’s insanity to try to do that but it feels nice to be liked so often we do try, I know I have. So now I’m politely sticking the middle finger to anyone who chooses to react to my openness with rejection, judgement, misunderstanding or ridicule and congenially request that they take it elsewhere and maybe take a look in the mirror on the way.

Silver linings – here we go.

– I’m closer to members of my family (and friends) in ways I’m not sure I would’ve been if life had gone a different way

-I’ve made the realisation that death doesn’t scare me, but suffering does

-I’ve learned that suffering can be reframed in many instances. Thanks Buddhism

-I know better who I am in the absence of any sort of ‘identity labels’ or expectations, which is liberating but also a potent insight to grapple with.

– I’m not battling myself: open mindedness fuelled by curiosity and regarding other people with a genuine interest in trying to understand them in their entirety and trying to understand life philosophically, that’s basically who I am. I like to understand what I’m drawn to as thoroughly as possible, cutting through bullshit in whatever form it takes to get to the essence of something.

– Fear is always there. I am afraid of being judged, misunderstood, rejected and alienated. Also of having no security physically in my body or materially and of losing control completely through physical debilitation.

– I’ve realised how impatient I am once I’ve decided I want something. How obsessive I can be when emotionally drawn to something. How confused I am over the way my life has gone and the grief I carry as a result. That I very efficiently cut off from my emotions when I feel overwhelmed which can be an obstacle to connecting properly with others. That I still care what other people think as a deep-set default. I am also very hard on myself and try to live up to my values despite my fears which I see as ultimately weak and purposeless.

– I am deeply driven to try to help other people heal and feel more whole in themselves by being more authentic, being honest, showing that nothing is really too taboo or shameful to bring up with the right (read: supportive) people.

– If my perspective could be summed up in one sentence it would be: the less aware we are of our ‘darker’ sides, the more likely they are to control us and bring about suffering. Second sentence: a life unexamined is a life half-lived.

– Humour can be a lifesaver. Never leave home without it, nor indeed stay home without it. Take it everywhere, like you would a favourite pen or some lip balm. They’re what I’d take but my life isn’t exactly wild as you may have gathered from visiting this blog.

-I’m much less attached to outcomes and focus more on getting through each day, hour, minute and so far no matter how shit times may have been (read: VERY) it always, always shifts in time. You just have to wait long enough.

-I’m stronger than I knew. I’m more fragile than I knew. The difference between the two isn’t as great as I once thought.

-I’ve learned that efforts to be grateful and take notice of simple joys are worthwhile and an essential tool in managing protracted difficulty

-I’m more respectful of my own time and energy and discerning in who I give it to

-I’ve discovered how much love I have in my life which is humbling and beautiful

I think that’s enough for today folks. Thanks for listening.


Water and fire

Blogs are a curious medium. They completely blur the line between public and private. They are paradoxical. Something that we’ve come to assimilate into the fabric of our communication repertoire surprisingly quickly. Much like we’ve rapidly adapted to other forms of social media, smart phones, the digitisation of more and more aspects of our material lives.

I wrote about this as part of my final year undergraduate thesis, which I wrote in 6 weeks rather than the allocated 12 week semester because this was when I first crashed health-wise. I’m still not sure how I did it. Probably, in part, because I chose to focus on blogging in the humanitarian sector so my interview and survey participants were already inherently altruistic. That’s a wry sort of joke, but like most jokes there’s some truth in it.

I won an award for that piece of work and I remember this ambivalence in my gut about it. The opportunities for my career were sky-rocketing but as I went up to the podium to accept a bottle of champagne and the kudos in front of a room full of my peers and established veterans of the profession, I was unwell. At my strongest public moment, I felt personally fragile and destabilised. The distinction between public and private was clear for me in that instance. I felt such a schism between my internal and external experiences as I was stretched more than I’d ever been before in both aspects. It felt surreal.

I think about the course of my life mostly as a perplexed mind might approach a puzzle. Threads that seem to be going clearly in one direction have been contorted and severed at the strangest times. Conversely, at my times of greatest despair fortuitous coincidences have frequently occurred. The concept of fortune and misfortune has been muddled for me so much that I have chosen to become mostly detached from outcomes.

But we all need a driving force in life. Like Kurt Vonnegut said in explaining the necessity of momentum while writing a story:


So, too, do I. This blog is where I discuss the ways in which I ‘drink water’. It doesn’t really have a set theme or trajectory, which is something I have previously considered lacking, but now feel is appropriate. How can I make consistency here when my life is so inherently inconsistent? Why do I feel that I should try to make it otherwise?

Well, seeing as it’s just me monologuing here – which is essentially what blogs are, a sort of modern soliloquy that may or may not be heard – I’ll try to answer for myself. Writing here is basically putting my mind on a projector that is a webpage on the internet. But like I said, this is my glass of water – one of them. So I can speak for myself and say I seek consistency because it gives a sense of control, achievement and progress.

recovery-not-linearIt also makes dealing with other people significantly easier. It is a burden to be unwell, but it is an almost equal burden to be unwell in such a way that it is very difficult to convey the parameters of your wellbeing. In recent weeks I have felt the best I have in years. My treatment is having positive effects. Simultaneously and interspersed with this experience I have felt so unwell that we’ve called an ambulance and I’ve feared for my life. I struggle to understand this so I can see how it would appear even more inscrutable to anyone not living in my body, not living as my carer seeing me every day with all my ups and downs or not experiencing it directly for themselves.

Consistency would dissolve the social tension that invisible illness reaps upon the lives of those it visits. Often for protracted times, well beyond the parameters of a polite acquaintance. Chronic invisible illness is the forced marriage our body will not let us escape. A frequently lonely alliance it is, too. But there are fruits borne of solitude, that could not be birthed in any other way.


The impetus to write came to me today from one of those strange coincidences that shook me out of a sort of space of despair. I had been thinking about money and the worth of my life, in quite practical terms. I do not consider myself special outside the love and warmth I share with those I’ve formed bonds with over my life. I do not believe any one life is more valuable than the next but we can measure the value of a life by what a person positively contributes, we often do this most intensely posthumously.

I’d been thinking about the scales tipping, how what my family and loved ones have sacrificed so I could keep pursuing wellbeing has been so great and is becoming greater without a certain end in sight, though my recent improvements show we’re on a good trajectory but continuing will be expensive. I wonder how far we have to go and at what point is my advantage no longer considered more important than others’ disadvantage – my family members face financial instability in their latter years because Lyme and co-infections in chronic form is unrecognised in my country and completely unsubsidised. This saddens me greatly.

Even if I make a full recovery, the wake of this illness will remain.


(Ripples image from JohnMcPherson at DeviantArt)

Please understand I am not saying I don’t want to keep trying, if finances were not an issue I would not be thinking this way at all. But every time we try something and expend more resources, I make a choice to take from those I care about. It causes me to contemplate my personal value. The urge to survive fights with my concern for people I love and their longterm security.

Often I do a sort of prayer as I’m lying in bed waiting to fall asleep – which can take hours when insomnia is particularly bad. I’ve mentioned previously that I’m not religious but I’ve been listening to speakers on Buddhism and I am mindful in the sense that I try to check myself when I feel my thinking spiralling into places that make me feel so bad that I won’t want that ‘drink of water’ anymore.

So last night after trying to objectively assess my situation, resources, the odds of recovery and impact on those I love, I lay in bed and thought hard about what I want. Not what I think I should want in life, but what I deeply want. This is what I came up with:

– To help people in a widespread and useful way, to positively contribute to the world on a level that extends beyond my individual life

– To be free to engage intellectually and socially with a very wide range of people, because I consider who I am to be a collection of conversation fragments from others, lasting impressions that have moulded my perceptions, values and actions. I have keenly felt the loss of this part of my life and it makes me feel stagnant

-To have physical wellness that will reliably form a foundation upon which I can exist out in the external world independently, making almost anything possible if I put the full force of my reclaimed energy into it


That was it.

On another night I might’ve come up with different core wishes but these are all things that would fulfil me, and right now I do not feel fulfilled. I do feel clearer though.

Then, not long ago, a peculiar thing happened. I need to set some context before I relay the experience and its significance. This past week has been gruelling by most peoples’ standards, certainly everyone in my immediate social sphere and pervasively through media outlets I follow. We will have President Trump in the US, but hot on the heels of that announcement came the news that Leonard Cohen had died.

More so than any other popular figure (and we’ve lost a proportionally high number in 2016), his passing knocked me. I felt assaulted by the regurgitation of his various most popular lyrics, appropriated on social media to fit someone or other’s rhetoric of grief. In my own way I should admit I did this too but this time I felt heartsore because I’d taken those words to a place deep inside and I’d woven them into my core as a form of ballast against questions that troubled me. I felt protective. I felt loss. I could not listen to the musical tributes because I would cry. I saw him perform live in 2013 and I cried then because I knew I would never see him again. It’s making me teary now.

Yet today, I happened to be watching the final episode of The Americans, a TV show I’ve been binge watching for several days and in the final episode they started to play “Who by fire” by Cohen. I’ve watched four seasons of this show over recent years and I don’t believe they’ve ever used a Cohen song in their soundtrack before. It forced me quite strongly into the present moment. It forced me out of my self-imposed embargo on his music, it unfroze my grief.

Watching the tributes come thick and fast in various media, I could see the blending of private and public, and I realised it carried a peculiar sort of beauty. The words that he wrote, that I took to heart, that were quoted seemingly out of place and truncated, well they were evidence that my deepest feelings are shared. My private appreciation matched the sentiment of many, many other people. Listening to and reading this particular man’s words has been my ‘water’ many times. It has informed the fabric of who I am and in some way that connects me to the world.

I’ve mentioned in past blogs that my diagnosis came about as a result of a series of synchronicitous events. What I may not have mentioned was that that cluster of events happened at a time of deep despair in my life, when I questioned the point of living a life of debilitation and suffering with no explanation or end in sight. Then an answer came and I found my way forward. Religious people would call this the work of God but like Nick Cave sings in the song ‘Into my arms’ I don’t believe in an interventionist God. Truthfully I’m still not sure what it is, but it keeps coming at times when I’m at my lowest and earnestly questioning what the point of my life is and whether it should continue.


As I said, we can measure the value of a life by what a person has positively contributed in some fashion. I think it is clear that Cohen’s contributions are widely, profoundly valued. I hope I have the opportunity to contribute more broadly in my own way. I have a fire in me that has settled down to a slight blue flickering orb but I know there’s the potential for a fierce blaze to grow. Fortune and misfortune feel like strings I am not within reach of pulling so I don’t know right now what will transpire but as long as there is a drink of water to quench my thirst, in this story, the fire continues to burn.


Unluck or chance

664. That’s the number of words I could read of NewPhilosopher before my mind ran out of steam. Coincidentally as I typed that sentence I was listening to the first few lines of an old song by Peter Gabriel. Guess what it’s called? Steam. I get this a lot where words or themes I’ve been thinking get repeated in strange ways through conversation or other external input at just the right time. For instance one of my recent blog posts included a reference to the song “Killing me softly” which was actually taken from a note I wrote online a few years ago but I’d dredged up to illustrate a point (the Anam Cara blog post if you’re wondering) so I posted it, then that night mum wanted to watch something mindless on TV so we watched old recorded episodes of The Voice. I often have trouble concentrating completely on the television since falling ill, I have to be doing something at the same time, I don’t know why. I have trouble concentrating on one thing for too long. So as mum watched I was rereading my blog post and at the exact moment I got to the part about “Killing me softly” one of the singing competitors started singing it. That sort of thing. It’s the timing that’s most peculiar and intriguing.

Anyway I’m playing this album because mum’s working from home and it’s an old album of hers and I knew she’d enjoy it. But it also reminds me of a really happy time when we lived in a share house with two other women, one of whom was quite extrovert and fun (the other had lived in Switzerland and introduced me to the french language which I went on to study at a tertiary level and still love). She used to wear tight leopard skin dresses and her hair was a shaggy bleach blonde halo. She and I (me aged about 7yrs) would dance and sing along to this song in particular. I remember the first time I saw TLC’s music video clip for ‘Waterfalls’ – I used to watch Rage every morning (for those that aren’t Australian, Rage is a sort of countdown of top charting music that would start early in the morning and count down to the top ranking video of the time – this was early 90s when I was at my most devoted) and she popped her head around the doorway into the sunroom of the big Queenslander house we occupied and said “who’s that? They’re great! Turn it up!” Now that clip is so well known and would be considered a retro 90s classic.

I digress again. So the point of this post is a bit of a hall of mirrors. The feeling is one of irony, curiosity, grief, hope – mix those up and bake them into a human form and that’s me right now. For context, you need to know that I’m a nerd. I use that term fondly. I did well at school, I love learning, I particularly love philosophy and personal histories – if I’m interested in a person I want to know everything about them: celebrities and friends alike. People are fascinating.

One of the hardest aspects of being sick has been losing my cognitive stamina. Most of my mental energy in recent years has been poured into understanding my health – which has been a steep learning curve but I now know what most of the shorthand on my monthly blood requests means. I consider that an achievement. Proud as I am of my increased health knowledge, it’s come at a cost. All my mental energy has been focussed on myself and my situation – because I see this as the only way to get out of it. In the meantime I’ve not been engaging with others like I used to, I’ve not been coming up (at an intellectual level) against random thoughts and opinions on all kinds of topics through interacting with others. I’ve discovered this was a massive part of my personality and what ‘turned me on’ about life. I can have it in little doses now as my energy allows, either through socialising or through reading. But it’s rationed now, whereas before I could freely and voraciously communicate with friends and read to my heart’s desire – and my heart very much desires knowledge.

664 words before my eyes are too tired to focus. Before my mind turns to cotton wool and I can’t process the next sentence. I’ve tried reading it 4 times. I feel a knot in my stomach. I feel caged, inside myself. Here’s the hall of mirrors part though, one segment of those 664 words was this:

“No individual can be in full control of his fate – our strengths come significantly from our history, our experiences largely from the vagaries of chance. But by seizing the opportunity to leverage and frame these experiences we gain agency over them. And this heightened agency, in turn, places us in a stronger position to deal with future experiences, even as it may alter our own sense of strengths and possibilities.” – Howard Gardner

Can you see the peculiar relevance of this. The way it bends in on itself like the action of me reading this, then not being able to keep reading speaks to what I’m reading all too perfectly? I’m intensely frustrated that I can’t keep reading but maybe all I needed to read today was that quote. Maybe it’s a reminder that even though I feel cheated by life, that my dulled cognitive ability feels uniquely like a punishment because it is something I most cherish about myself, perhaps this hardship is an opportunity for me to see differently. The ‘vagaries of chance’ are something I generally approach as a caged tiger, snarling at a ringmaster’s whip. I’d prefer to be the master of my own fate. But wouldn’t we all?

So for now I concede to my limitations. I’ll pick up this magazine, filled with content that feeds my heart, at another time. I will try to accept myself today in this altered capacity that I did not ask for, but have been given.

dali-cats(An image from the magazine, which I love. Stillness and movement, chaos and creativity. Perfectly imperfect.)

The feels


A big part of this illness ‘game’ is keeping your head up, trying to stay positive. When someone else says it, depending on the context, the inclination can be to want to swiftly punch them in the face. Right in the face. But really, it’s true. True but by no means easy.

I must be feeling a bit better, the fog must be clearing slightly in this muddled underworld existence. I know I’m feeling better because I start …feeling. Not to say I can’t feel when I’m in the throes of a very bad flare or health crash. But I can’t feel with a lot of energy. This is something I never knew until falling ill. I’d often fed off my own high emotional energy in the past – to get me through hard times, to motivate myself, to enjoy being alive. I felt like I’d lost a limb when I lost that energy.

It seems one thing I’ve learned through years of illness is that no matter who we think we are (and I previously identified my personality very strongly with my emotional landscape), when your vitality is low enough, you can’t maintain your personality. You just can’t. Not as it was. For me my exuberance is dulled, my tendency to be angry, spontaneous or excited is less. I simply don’t have it in me.

At times this has felt very hard as I’ve wanted to get angry and storm off, or I’ve wanted to dance around with joy but in both instances my body has prohibited me. I haven’t been free to express these stronger emotions in a physical way, except for a few rare moments, in years. I may put on a mask of exuberance for a time – but it’s not completely real. I do this for others and for myself, because I find the relentlessness of this illness as boring and insufferably dull and morose as I’m sure onlookers find it. This doesn’t mean I’m depressed all the time, it means I’m so perpetually exhausted physically 90% of the time that I am limited in how I can express myself.

But I’ve been feeling today. More of that fiery impatience, anger, frustration – I want to get out and go for a run…except my body is so deconditioned from years of being unable to move much at all. Which only heightens my annoyance. “What is the point of all this?” I think. I used to exercise to keep in shape and now, it seems I’m punished with not being able to then facing the prospect of needing to start from scratch with my body like I never tried in the first place. I wonder if I possess the patience required to do this dance of waxing and waning vitality. I’ve come to the conclusion that I don’t really have a choice.

Then I recall my worst moments, in hospital or at home. So awful that I can only contemplate them from a distance, putting a hazy wall of safety between me and these memories that I lock in dark folds of my mind. I do this to edit my perception of my life so that it is at least tolerable, if not remotely desirable. It enables me to be relatively cheerful and pleasant from day to day. Sounds contrived but another lesson I’ve learned is happiness (or ‘not engulfing sadness’) takes work – at least in my situation. I’m proud of myself for not staying in the dark places I could go.

When my energy lifts a bit, the lid comes off some of what I’m repressing. It’s just another perverse quirk in this chronic illness thing. But I can’t really invest in it because so far it’s always been fleeting, sporadic. People might read this and indeed some have said to me “why don’t you just get a hobby?” or “why don’t you try online dating?” but at the end of the day I’ve tried so many times to start things only to fall in an exhausted heap…it might be hours, days or weeks – but inevitably I do fall in a heap. By which I mean I may not be able to muster the energy to shower. Hobbies and dating require much more of me – I wish I had the capacity to commit because I want to. So so badly. But wanting doesn’t change reality.

When I’m really ill I glorify wellness – I make it the proverbial carrot on a stick that I need to focus on but the truth is you don’t just arrive there. It’s this up and down that comes with lots of discomfort and self-reflection and frustration and gratitude. It’s a messed up rubix cube of thoughts and feelings being thrown around by a manic toddler. There’s no flat ground. It’s always changing. It’s hard and it can be isolating but for now it’s the life I have. I am loved. I am safe. There’s always hope on the horizon. And so I switch my focus to what I can control and sometimes that’s just my thoughts as I lie inert on my couch. Sometimes it’s much more and hopefully one day it will encompass a whole lot more but for now, this is it. My one precious life, no second chances. This. Is. It.

wild precious life.jpg

Anam Cara AKA poem love

writer thought photographer

…So allow me to paint a picture for you… Right now I’m in a period of convalescence. I don’t know about others, but I often carry a simmering sort of guilt since falling ill – it makes me hypervigilant about how I convey my experience of life on a daily basis, which is tricky because I really crave honesty and sincerity but often feel I have to adjust or edit my reality in daily life just to smooth things over. I could choose to be more blunt but it’s never really been my style. By contrast, fortunately before falling ill my basic self and life direction weren’t particularly controversial or socially awkward so I felt more at ease with communicating my life story and goals to others. I basically fell out of the rhythm of my own life and I don’t think I’ve ever properly settled into this ‘new’ life of wavering vitality and myriad symptoms. In my head it just isn’t me. Part of my growing up process in the years since falling ill has been about making the tough decision on whether I was comfortable to open up and be honest about my more uncomfortable life story now. It has been a conscious choice to keep to talking and documenting my life even after it turned into something I never wanted, nor would want for anyone really.

bud quote anais nin

I wouldn’t say I’m ‘blossoming’ but certainly the pain of silencing and censoring myself (which lasted about a year after I fell ill and was grappling with my new reality) became too great so that the risk of exposing my life as this new, more challenging and unenviable thing became less hard to bear. I reached a point where I felt so low that I didn’t much care about peoples’ opinions anymore. Since then it has been a rollercoaster but by and large, each time I’ve opened up about my experience I’ve been both relieved and pleasantly surprised by the support I’ve had from others.

I still don’t wear this role with ease though. Maybe that’s just because a lot of the time it’s really objectively difficult, it would be no matter who you are. I’m not saying that for sympathy – I’m saying it to be honest, with whoever reads this and with myself. By writing I learn things I can’t process purely on my own in my head. Somehow the process of typing it out makes it easier to understand – like plastering my thoughts on a mirror. I can ‘see’ it, work with it and put it outside myself before trying to reintegrate it. Maybe that doesn’t make sense – as a visual it’s like my thoughts are a ball of wool that’s all tangled and complicated in my head and as I write it comes out as a nice smooth thread and then eventually is woven into something recognisable, with shape and form. Okay if that metaphor isn’t doing it for you then skip on ahead because that’s all I’ve got!

Kitten-Yarn(This kitten represents my internal confusion. No, it doesn’t. I just wanted to put the kitten picture in. Because…kittens.)

So this guilty feeling I think is more a sort of tacit understanding of being ‘different’ now. Both in my life’s occupation (getting well – which is proving to be quite involved) and in tangible ways socially like when I need a wheelchair when out in public (not all the time, but certainly if I’m out and meant to be going any extended distances I would ordinarily otherwise walk) which is a very obvious marker of ‘she’s unwell’. This is what I mean by difficult…difficult is the sensation of constant friction and discord with my social environment which then translates into discord within myself about myself. Oh and I feel defensive too! There’s like an inner critic that sounds a bit like people I’ve known and just a bit like plain old insecurity – probably a mixture of both and it says: “my god you’re so self-absorbed, why are you writing about this no-one cares, some people have real lives to worry about you know???” I’m often dialoguing internally with this voice – it comments on almost everything. Right now it’s telling me that writing about my various ‘internal voices’ makes me sound schizophrenic. I’ve told it to eff off. Mentioning social awkwardness was just my foreshadowing for what I just wrote. Other people have conversations with themselves in their own heads? Right? Anyway…

What I’ve been doing today, as I recuperate from travelling a VERY. LONG. WAY. (over an entire ocean and then some) to see a Doctor who specialises in what ails me (not mental neurosis, Lyme disease, the neurosis is just part of my personality, it’s here to stay folks!) is I’ve been reconnecting with some writing. Specifically poetry. Even more specifically the poetry of a man called John O’Donohue who I did not know of until a few years ago when a poem of his was shared in an online support group for people with chronic illness and I read it and it struck me very strongly. Each time I reread it I’m similarly struck. To the extent I’d consider getting part of it as a tattoo – I have no tattoos to date – not because I’m against them but more that I feel my aesthetics are too fickle to permanently put something in ink on my body, I don’t trust myself not to change and despise it in the future. But there’s a particular line in this poem that I feel so deeply connected with that I may just commit to inking it. I’ll keep you posted on that.

regret tattoo

I’m sharing the poem here, along with what I wrote about it in the post where I shared it on my personal Facebook page, at New Year, a few years ago. I later learned this poet was born on New Year’s Day and died shortly after New Year suddenly and unexpectedly in 2008 so the timing of me finding the poem and how aptly it fit my mood and sentiments in New Year a few years ago, is quite incredible.

I wrote: New Year’s Eve feels like a raw and aching sort of challenge for the chronically ill – it throws our personal situation into stark relief against the temporal mood of festivity, anticipation and hope. Promises of new beginnings are undercut by rememberings of relentless struggle. It’s hard to believe with any conviction that ‘this will be THE year’ …the year we get ‘better’, which is to say: healthier, more free, independent and in control once more of our lives. 

Still, there is something a bit magical about New Year and for me, that flickering light of hope and belief in brighter days ahead is fuelled by a subtle and gentle philosophy of compromise. My expectations remain, yet only so long as they are in a state of fluidity. Black and white declarations about what I will do and how I will be are not useful. They are born in my mind and then swiftly crumble to ash when I attempt to conceive them into reality. An all or nothing approach, it turns out, is a hindrance to my survival.

Someone I don’t know shared a poem this morning on one of the online groups I am part of and it really epitomised so much of what I feel is my inner world but I know is shared by many, many others in a similar position. It’s one of those things that hit me a bit like a lightning bolt – right to the chest. It never ceases to fascinate me how a stranger’s words can feel so much my own. Like the song “Killing me softly”, sometimes those we don’t know seem to know us – and there’s a strange sort of comfort in that.  

I would say that this poem reads somewhat like the kind words of a friend or loved one to someone suffering illness, and somewhat like a prayer. I’m not religious in any traditional sense so instead I like to think of these words as being like a ‘hug for the soul’, a gift of solace, insight and empathy when it feels like you’re walking a dark path made an inkier black by uncertainty and isolation. They offer a little light to brighten and hold a space in what would be nothingness. And light cancels dark, simply by virtue of its own existence. That’s the magic I’m holding onto this New Year.

For a friend, on the arrival of illness
John O’Donohue

Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.

You barely noticed how each day opened
A path through fields never questioned,
Yet expected deep down to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.

You lived absorbed in the day to day,
So continuous with everything around you,
That you could forget you were separate;

Now this dark companion has come between you,
Distances have opened in your eyes,
You feel that against your will
A stranger has married your heart.

Nothing before has made you
Feel so isolated and lost.

When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.

May you find in yourself
A courageous hospitality
Towards what is difficult,
Painful and unknown.

May you use this illness
As a lantern to illuminate
The new qualities that will emerge in you.

May the fragile harvesting of this slow light
Help you to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.

May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?
What quality of space it wants to create in you?
What you need to learn to become more fully yourself
That your presence may shine in the world.

May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Towards the healing and freedom of dawn.

May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.

May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth.

Image my own, taken of the sunrise from the aeroplane while flying home recently.

I don’t know about you but writing like this, to me, is life-affirming. I’ve been reading more of John O’Donohue’s work today from my bed and it’s a sort of ecstatic feeling to ‘hear’ someone put words together in ways that aren’t purely utilitarian but instead they’re artful and non-linear and faceted. It’s beautiful. Like a great live music gig or falling in love. I don’t know it must just do something to my brain. I think it’s also the realisation that someone else I’ve never met has this rich, complex, artful and inquiring internal world and by writing in such a way it makes me feel more connected to humanity. It’s the externalisation and communication of feelings and impressions that might otherwise never be captured and conveyed. Probably we all wonder but few can express this wonder, create that thought-photograph if you will, as well as the late John O’Donohue. May he Rest In Peace.

be the poem