Being sick is like being trapped in a car while your husband goes hiking

“Trapped” might be overstating it, since the car doors were unlocked, though metaphorically you could say I’m trapped by illness, and therefore it’s an accurate interpretation of our trip to the Blue Mountains last week.

I’m still sick, and still taking regular breaks from the whole-lotta-nothing I generally do most days. And it’s still boring and lonely and heartbreaking, and also not nearly as bad as it could be, so I’m trying not to complain, even when I get left in the car by the side of the road to nap in the backseat while Steve and his cousin go hiking in the mountains.

FYI, I love hiking.

Being sick is like being perennially stuck in the car while everyone else does stuff you used to do, but without you. Sure, I can pose with the best of them. Look at me at Echo Point, smiling like a healthy person and convincing everyone I’m having a great time!

Ashley Kalagian Blunt on chronic illness

And I was having a great time, in the sense that I was relieved to have escaped the apartment for a day, and have the mountain scenery to distract me, even though I spent most of the drive feeling like I was being run over by a tractor.

Here’s the thing: if you meet up with me, I’m probably flooded with adrenalin at the excitement of being out of the apartment and interacting with another human creature, to the point where I’m talking 7200-words-per-minute and, if you look closely, vibrating slightly. I don’t look sick.

But after, at home, I’ll go straight to bed because my eyeballs are burning and my muscles are aching and my brain is too muddled to figure out dinner (does hummus go with oranges?), even though all I did was sit and drink three cups of lemongrass tea and converse for 97 minutes in a public setting.

You’re right, I’d probably feel better if I’d just stayed home alone all the time, except I would go insane.

I am getting better, but it’s slow. Slow like an overseas letter posted circa 1824. Slow like a slow cooker you forgot to plug in. Slow like Australian internet.

I assumed my recovery would look something like this highly scientific graph, where the x-axis is time, and the y-axis is healthfulness: Ashley Kalagian Blunt on chronic illness

A much more accurate depiction of my recovery looks like this:
Ashley Kalagian Blunt on chronic illness

(Which is of course stolen from Demetri Martin.)

My point, if I have one, is that I’ve been in that swirly mess stage of recovery lately, and writing all 419 words of this has felt like a punch in the face, so I’m going back to bed now, at 11:23 am. Good night.

 

How not to be Australian – part 3

Cradle Mountain summit, Tasmania by Ashley Kalagian BluntDespite becoming delusional, I was making steady progress up Cradle Cliff. Steve, of course, was thirty metres ahead. I stared daggers at his steadily receding back. Despite being far more athletic than me, he’d been keen on Dove Lake trail because he’d somehow gotten the impression that this was a holiday, not an intervention.

Another couple were scrambling over the rocks, making their way down. They were two fit young people in brand-name workout clothes and trainers – trainers, not even proper hiking boots. They jumped from rock to rock like they’d both been bitten by the same radioactive spider.

‘Hey, did you make it up?’ I called. ‘How far is it?’

The guy shrugged. ‘Maybe 30 minutes?’

I nodded, clinging to the edge of the rock face to let them pass.

I can handle 30 minutes.

Five minutes later, I asked another lanky guy the same question.

‘It’s probably an hour, I think.’ He consulted his watch. ‘Yeah, it’s been an hour since I left the top.’

By that time, the optimistic part of my brain had been in overdrive far too long. I gave into full-blown pessimistic fear like the embrace of an old friend: not only was the top at least an hour away, but I was also, right at that moment, actively developing skin cancer.

Tassie hike
The rocks continued straight up. There was no longer any slope, just a cliff face of giant boulders. I’d come so far, and my brain was determined to reach the summit – Year of Success, symbolism, etc. My body, however, did not give a scrub’s tit about success. My body knew I shouldn’t be climbing a chaotic mess of appliance-sized rocks over a 500-metre drop. My body knew I had been out in the heat with limited water for many hours. It knew I often cut myself with dull kitchen knives and had more than once managed to trip and fall over while standing still.

Based on that preponderance of evidence, my body decided that if it couldn’t override my brain by broadcasting its increasing fear, it was going to shut this expedition down the only way it knew how: DEFCON 1 panic attack. My legs and arms trembled. I started hyperventilating. Anxiety threatened to choke me.

‘Steve,’ I called. ‘I don’t think – I don’t think I can do it.’

He turned to look down at me, hanging one-handed off a boulder with the grace of a shaved orangutan.

‘Are you sure?’

In response, I started to sob.

At that moment some of the hikers that we’d passed earlier caught up with us – a family of five, mom and dad and three boys.

The oldest boy might have been 12 and the youngest seven or eight. They were scampering up the rocks like monkeys on a jungle gym. Their parents called to them to wait without actually expecting them to do so. Both parents showed the level of exertion you’d expect from – well, from people on a great short walk. They didn’t look or smell like they’d just poured a bottle of last week’s sweat over themselves. They didn’t seem overly concerned that one of their kids might tumble from the cliff face to an abrupt death below. And what I particularly noted was neither of them was clinging to a rock ledge weeping because their whole year was over before it started.

Steve worked his way down to me. We waited while the parents ambled past us, chatting cheerily. Other hikers were coming down the rocks, and we could tell from their beatific faces that they’d made it to the summit, taken in the 360-degree view, and achieved a meaningful personal goal. More people were making their way up as well, including several other primary school kids who were clearly my physical superiors.

These were Australians – fearless, physically fit, blissfully unconcerned over their children’s daredevil antics. No matter where they were actually from, in that moment, on that mountain, they were Australian – and I, definitively, was not. I might fancy myself a bit of an outdoorsy type, I might genuinely enjoy a great short walk – but so help me, I was going to cling to the Canadian definition of ‘walk’, even if that made me an un-Australian wuss with piddling career prospects.

Sitting on the cliff ledge, I cried for a while.

Steve sat beside me, patting my hand. ‘It’s not a big deal,’ he said.

It was a big deal.

We headed back down. I accepted that I’d have a meandering, futile year just like every other year. Despite my passport, I’m not very Australian, and maybe I never will be. If I do get skin cancer from the vicious Aussie sun, I’m sure I’ll be among the over-anxious minority who don’t survive.

But in the meantime, I might be able to at least find a scrubtit.

 
Lane Cove Lit Awards 2017

This excerpt from my current manuscript-in-progress, How to Be Australian, was shortlisted for the Lane Cove Literary Awards and first published in the 2017 anthology.

How not to be Australian – part 2

By now the trail was a steep outcropping of white rock marked by deep ridges. Chains ran along steel poles drilled into the rock. Using the chains, we hauled ourselves hand over hand. This seemed to be the only way up for anyone other than an actual mountain goat.

Tasmania Cradle Mountain hike by Ashley Kalagian Blunt
We were sweating like Niagara Falls. The forecast was 35 degrees with unrestricted sun, but surely, it would be cooler as we headed up the mountain.

Despite the heat, I was feeling peppy. I couldn’t see the top, but it felt like we were making great progress.

‘This trail isn’t very fun,’ Steve said.

I ignored him. As I climbed, I searched the surrounding bush for Tasmania’s native scrubtits. I was keen to see one, a desire that I will admit was based 100% on their name.

We were nearing the top of the rock face. I called below to Steve to hurry up, and with one last burst of energy I heaved myself the final few steps onto what I could only assume was the summit.

There, in the distance, was what appeared to be another mountain. A completely separate mountain. This new behemoth stood by itself against an empty sky.

Our current mountain had features such as vegetation and a trail and even thoughtfully installed chains to aid in climbing. The beast ahead had none of these things. It was a barren pile of rocks with thrusting upper ridges that looked like the inspiration for Mount Doom. The Eye of Sauron would have been right at home between the horrible crags at its peak.

‘Is that Cradle Mountain?’ I said.

‘I guess so,’ Steve said.

‘I thought we were on Cradle Mountain!’

‘I guess not.’

He looked at me with eyes that seemed to say, ‘Dove Lake is but a one hour descent away. No one has to know we turned back’. Except I’d already told all of the internet that I was starting my new year hiking Cradle Mountain. My pep was waning, but I steeled myself.

Tassie - Cradle Mountain sign by Ashley Kalagian BluntWe arrived at the base of The Real Cradle Mountain. As the trail ascended, it quickly lost all the qualities normally associated with the term ‘trail’, such as being a surface suited for walking on, having edges, and guiding you to a particular destination. Instead, there was a stark metal pole every 50 metres or so, indicating roughly the direction you might want to head. This was the only sign that any human had ever been here before us. Earlier we’d heard cicadas buzzing and possible scrubtits chirping. Now there was no sign of life beyond the lichens on mountain’s brown rock. A hot breeze whistled over the barren landscape. I could have sworn it said go baaaaaaack.

We were walking on apple-sized rocks and then we were stepping over watermelon-sized rocks and then we were lost among prize-winning-pumpkin-sized rocks, piled up like they’d been dumped from a giant sack. Some seemed precariously balanced, as though one load-bearing rock could let go and all of Cradle Heap would collapse into the valley below, with our bodies crushed among the debris.

Tassie - Cradle Mountain trail by Ashley Kalagian Blunt
I was thinking that uncomfortable thought when the rocks around me became larger still. These were refrigerator-sized rocks, and all pretence of walking was gone. Clearly Tourism Tasmania couldn’t grasp the definition of great, or short, or even walk.

Steve and I started clambering skywards. Conscious of how easy it would be to slip and plummet, I placed my feet and hands with a cautiousness normally reserved for holding newborn babies. My heart raced and the whole mountain seemed to sway (cradle like, one might say).

Soon my heart was on the verge of exploding out of my chest, just like a baby alien, but instead of starting a homicidal rampage, it would plop to the ground and slither down the rock face, leaving a crimson trail of defeat.

This excerpt from my current manuscript-in-progress, How to Be Australian, was shortlisted for the Lane Cove Literary Awards and first published in their 2017 anthology.
Part 3

How not to be Australian

Cradle Mountain summit, Tasmania by Ashley Kalagian Blunt

It’s a credit to my seventh-grade geography teacher and the entire Canadian education system that I’d always assumed Tasmania was one of the South Pacific islands, most likely a sister of Tahiti. It certainly sounds exotic. Tasmania! It was disappointing to discover the island is actually a miniature version of Scotland named after a Dutch guy – and the Dutch weren’t all that excited about it either.

It was the Christmas holidays, and my husband and I were in Tasmania for the first time. We’d recently become Australian citizens, and how better to celebrate than by experiencing more of this vast and baffling country?

Beyond finding the one place in Australia where the summer weather wasn’t a murderous inferno, I had a much more important goal for our Tasmania trip: to hike the Cradle Mountain summit on New Year’s Day.

My past few years had been meandering and futile, and I’d recently found myself unemployed. For months my typical day involved scrolling through several hundred jobs ads that all reminded me I was not, technically speaking, qualified for anything, and trying to hold off until at least noon before having my first glass of coffee-flavoured tequila.

Years ago I’d read that Australia had the highest rate of skin cancer per capita in the world, but also the highest recovery rate. This particular article attributed the high recovery rate to the cheerful, easygoing, no-dramas national attitude. Whether this was scientifically defensible or not, it made an impression on me: if the average Aussie could manage skin cancer with a positive attitude, surely I could at least stop handling my lack of career prospects by lying facedown on the floor in a puddle of tears and snot. I was, on paper at least, Australian – it was time I started acting like it. I’d discovered the Cradle Mountain hike on Tourism Tasmania’s list of 60 Great Short Walks. At six to eight hours, it seemed pretty long for a ‘short’ walk. But doing an ambitious hike with the definitive reward of a summit struck me as exactly what I needed to kickstart the year.

Dove Lake, Tasmania travel, by Ashley Kalagian BluntOn January 1, Steve and I stood in the Cradle Mountain car park as dawn broke on a brand new year.

‘Hey,’ Steve said as we laced our hiking boots, ‘how about we do the Dove Lake trail? It looks nice.’

This was about the eighth time he’d suggested this.

‘I told you already, it’s mostly flat. How is walking in a circle around an oblong lake going to set me up for a hard-charging, success-filled year?’

‘It’d just be nice.’

‘Says the man with a career!’ I retorted, as if this made perfect sense. How could he possibly understand? When it came to redundancies, he’d always been on the giving end.

We set off, bypassing the deep blue calm of Dove Lake and its forested surrounds. Steve looked dejectedly over his shoulder.

Bushwalking was one of the few ways we thought we fit into our new country. We’d always thought of Aussies as outdoorsy, people that liked getting out to surf, swim and hike. We’d been outdoorsy people in Canada, at least when the temperature was above -35.

But it turns out there’s outdoorsy people, and then there are Australians, who combine a love of nature with recklessness verging on insanity. Steve formed this impression from the first Aussies he’d met, while on vacation in Europe. There, a group of Australian blokes had invited him to go hang-gliding. In the Alps. They’d already been rappelling, bungee jumping, white-water rafting, parachuting and bull-running, and frankly, if things didn’t get a little more interesting, they were going to have to rollerskate the wrong way down the Autobahn, blindfolded. (As it turned out, one of them slept with a local’s wife, and they had to clear out of town abruptly when the husband rounded up a posse to demonstrate just how interesting Germany could be.) Moving to Sydney, we discovered this was part of the national character. Barefoot toddlers regularly flew downhill on scooters straight toward traffic, people casually drank more alcohol in an evening than I’d consumed in the past decade, and just beyond the bright yellow signs with NO SWIMMING – RIPS or pictures of deadly jellyfish, there were always, always people in the water. It was like the whole country was united in a joyous death wish.

In contrast, Steve and I have insurance on our insurance. We weren’t sure we could ever adapt to the fearlessness of Aussie culture. We’d lived here five years, yet we couldn’t shake our Canadian accents, we still asked where to find the whole bathroom instead of just the toilet, and despite having it explained to me numerous times, I still couldn’t distinguish between a mole and a dead-set mole.

None of this bothered Steve, but it irked me. I admired Aussies. I craved their carefree attitude. If I pushed myself, I thought, I was sure I could be more Australian. And that began with staring danger right in the face by hiking a really big mountain.

That said, despite some reviews I’d read online (including one with the memorable comment, ‘I thought I was going to die’), I assumed the Cradle Mountain hike wasn’t actually dangerous – just strenuous. Besides, I was seasoned at Great Walks, Short and Long. I’d hiked on five continents, including all four days and 4215 vertical metres of the Inca Trail. I could handle whatever Tasmania had to throw at me.

This excerpt from my current manuscript-in-progress, How to Be Australian, was shortlisted for the Lane Cove Literary Awards and first published in the 2017 anthology.
Part 2

CSI: Your Life

The post in post-infective fatigue syndrome indicates that an infection was the catalyst for the illness. In effect, I had an infection and my body successfully fought it off, but something went wrong in that process, which led to PIFS.

But there’s no way to what the infection was. For a lot of people it’s glandular fever (aka mono, aka the kissing disease – which is more aliases than some spies have). But I didn’t have glandular fever.

The doctors said the initial infection could have been subclinical, meaning I was never aware of it. (There’s also no way of knowing if the doctors have correctly diagnosed the condition. It seems like I have PIFS, but there’s no test to prove it. They tested me for literally every other testable condition, sometimes twice, then threw up their hands and said, ‘Huh, must be PIFS then.’)

This mysteriousness leaves me constantly wondering what actually caused my illness.

I have no way of actually knowing until medical science can give me some better information. But that doesn’t stop my brain from trying to be helpful by interrogating everything I’ve ever done/encountered as a possible suspect. Hey, my brain constantly interrupts, could it have been –

  • The chestal rash I had in 2014, that appeared randomly and vanished after three days?
  • The grapefruit addiction I developed in 2016?
  • The time I was bitten by either a gigantic spider or a tiny vampire?
  • Any of the other 82,937 mystery bug bites I’ve had since bugs abruptly added me to their directory of high-end cuisine? (My blood is the insect equivalent of Michelin rated.)
  • Voodoo?
  • The brief period I used the basement stairwell in our apartment complex, which smelled horrendously mouldy, resulting in trillions of mould spores holidaying in my lungs?
  • Any other of dozens of mould-based situations? Brief Encounters with Suspicious Mould is a book I might definitely write.
  • Alien abduction that’s been conveniently wiped from my memory?
  • Encountering some bacteria or virus in Bhutan / Uruguay / Morocco / Cambodia / Mexico / Malaysia / Armenia / Portugal / Vietnam / Bolivia / Thailand / France / Japan / Malta / Turkey / Queensland / North Korea / Peru / etc that set in motion a complex series of biological processes resulting in PIFS?
  • That time I ate alligator?

There’s absolutely no evidence for any of these theories in my personal case. Regardless, my brain has lots of extra time these days, so it obsessively spends that time picking through memories, examining them under its ultramicroscope, cataloguing and ranking them.

Here’s what scares me most: because I have no idea how I got PIFS, I never had a chance to prevent myself from getting it. I likewise can’t suggest to anyone else how they might prevent it. Keep your fingers crossed, I guess! And maybe avoid both gigantic spiders and tiny vampires, that’s just solid life advice.

 

Road Trip to the Future

You should definitely buy ten copies of @thebigissue this month, not only because it’s always great, but also because my creepy Tasmanian time travel trip is in there. Here’s a sneak peek: Ashley Kalagian Blunt - Tarrahleah article

This article is excerpted from my current manuscript-in-progress, a memoir called How to Be Australian. It explores the experience of becoming Australian citizens and the complex process of developing an Australian identity through travel, socialising and wild curiosity.

This issue is on sale until 17 May.
Big Issue Magazine 561

 

As terrible lotteries go

Ashley Kalagian Blunt
I consider myself a healthy person. I’ve always had a regular exercise routine that at various times included running, swimming, pilates and weight training. I drink lots of water. I’ve never smoked, I don’t eat bacon, and I rarely drank excessively. I don’t have a car, so my daily step average was 18,000 steps. Aside from some weekends during my first uni degree, I’ve slept eight hours nightly throughout my life. In short, I’m pretty boring.

Okay, I probably ate too few vegetables and too much sugar. For several years, my go-to breakfast food was chocolate ice cream. But I overhauled my diet in my mid-20s, cut sugar way down and even ate broccoli, like, once a month. Broccoli!

Although I tried to make good choices to give myself the best chances, it was an illusion to think I had much control over my health. Health is a lottery. Not a jackpot powerball lottery, but a terrible lottery. Like Shirley Jackson’s ‘The Lottery’, in which the winner is stoned to death.

Getting post-infective fatigue syndrome was like winning a terrible lottery. It’s especially hard in my mid-thirties; just as I was finally developing career momentum, everything feels derailed.

But! As terrible lotteries go, PIFS isn’t the terriblest, at least in my case. For one thing, I’m not in pain. A common chronic fatigue symptom is joint pain, and I’ve somehow avoided that. Pain is a major factor in many conditions, including related ones like fibromyalgia. Yes, I spend a lot of my days sitting around, watching my life tick uselessly by, but that would be far worse if I was also in chronic pain.

And while it took half a year of appointments to get a diagnosis, once that happened, I was referred to the Fatigue Centre relatively quickly. At that point, my fatigue was getting worse and worse. I was afraid I’d keep getting sicker until I ended up bedridden for months or years. Once I met with the Fatigue Centre specialists and started following their advice, my symptoms stabilised. And since my first appointment, I’ve actually started to improve.

Six months ago, I’d spend entire days in bed and sometimes struggle to brush my teeth. I was so cognitively depleted, I couldn’t even figure out the process to reheat a pot of soup. And it is terrifying to be 34 years old and confused by soup.

Now, I almost always have the energy to take basic care of myself, and usually have two to three hours of normal energy levels a day, if I follow a strict routine (and don’t attempt anything physically demanding, like walking uphill). It’s a long way from being able to live a regular life – working, exercising, socialising, travelling – but it’s promising.

The Fatigue Centre specialists expect my illness to last three to five years. ‘Ten at most’, they added, ‘as a worst-case scenario’.

It’s frightening not knowing what caused my illness. It’s frightening that there’s no medical treatment, because medical science doesn’t even understand the physiology of this illness (you know the pharmaceutical industry would be selling me pills if they could). But after getting gradually worse for more than a year, it’s a relief to feel myself getting gradually better. Yes, I’m bored and sometimes light hurts my eyes and sometimes I struggle to breath and I can barely walk up a mild incline and sometimes I’m so tired it’s unbearable just to sit up.

But I’m not in pain and I’m going to get better.

And just in case, I’m eating broccoli every day.

 

Greetings from the nursing home

Ever since visiting my great grandmother in a nursing home when I was a kid, I’ve dreaded the physical decline, mental deterioration and lack of mobility that are, for most people, part of old age. Occasionally I’d imagine myself as elderly, and start to panic. To calm down, I’d have to remind myself that people don’t just ‘get old’. It happens over a lifetime, and I had many, many years to go before I needed to worry about it.

Then, abruptly, at age 34, I became elderly.

Sure, I don’t have excessive wrinkles, and aside from one skunk streak, my hair isn’t grey. But since I got sick, I’ve experienced all the aspects of being elderly I’ve always been afraid of. Consider my life now:

  • I spend long stretches of time sitting quietly, staring into the middle distance
  • I tire very easily and extremely
  • I’ve lost all my muscle tone and am probably losing bone density too; some days even the hairdryer is too heavy for me
  • I sometimes needs help walking
  • People suggest I get a wheelchair
  • My main occupation is going to doctor appointments
  • I eat a lot of oatmeal (to be honest, I always ate a lot of oatmeal)
  • I can’t remember conversations I had two minutes ago
  • There’s a guy whose entire job seems to be wandering around outside my windows with a leafblower, and he is my nemesis
  • I tell long, rambling stories, and get confused in the middle of them
  • I have falls

The first time I fell was outside the infectious disease specialist’s office. I’d gone to sit on a bench because I was exhausted, as usual. When I tried to stand up, my brain noted that my feet were stuck under the bench. Then it noted that I was off balance, and heading quickly toward the ground.

My brain shuffled through the process it needed to execute to right itself. Clearly, something had to happen with my feet, but my brain was baffled as to which foot to move first, and how. It was still sorting through options – right foot forward? Left knee bent? – as my hip and forearm smashed into the concrete.

I suppose if I were truly elderly, my hip would have broken. Still, this was little consolation as I lay on the ground, confused about what had happened. A crowd of concerned onlookers rushed over to ask if I was okay and help me up, and I wished so, so much that on that particular Tuesday at noon, I could just be at my job like a normal, healthy 34-year-old.

I did go to work after that, despite the abundant evidence that I did not have the mental or physical capacity for productivity. My boss watched as I sat at my desk, putting bandaids on my scraped elbow, and then she sent me home, where I sat quietly, staring into the middle distance, and wondering if I would have any visitors that week.

 

Experience the nectar

Bhutan by Ashley Kalagian BluntIn 2015 I visited the Kingdom of Bhutan, a tiny Himalayan country wedged between China and India, like a pea delicately set between two butt cheeks. Bhutan is world renowned for its Gross National Happiness philosophy, which the government believes is a more important metric than the standard GDP. It’s less renowned for its history of ethnic cleansing, which forced more than 100,000 people out of the country and into refugee camps in the 1990s.

One other notable cultural aspect of Bhutan is that everyone is really into anatomy, specifically one region of male anatomy.  For example, one of the local drinking establishments is named Phallus Bar. Their slogan is  –  this is true  – Experience the nectar of Phallus Bar.

(I didn’t experience the nectar. I kind of regret it.)

Bhutan folk art tooIn villages in Bhutan, if you, as a male property owner, want to indicate to your neighbours that you’re strong and virile, you paint a giant phallus on your house. This is one of those cultural aesthetics that is perfectly acceptable in the region it originated in, but if that same Bhutanese guy were to move to the West, his neighbours may not appreciate his exterior decorating style. Or they might. It really depends what neighbourhood he ends up in.

Bhutan folk artThis obsession dates back to a Bhutanese religious folk hero, the Divine Madman. He was both a Buddhist master and ladies’ man, judging by his reputation as the “Saint of 5000 Women.” The Divine Madman used his “thunderbolt of flaming wisdom” (his term, not mine) to kill evil spirits. He was basically an x-rated Buddhist superhero.

This is all to let you know that in May, a monologue I wrote after my Bhutanese travels is being performed at Voices of Women in Sydney. It’s called “Tonight’s Performance: You’ve Definitely Got Rabies” and it doesn’t require you to know about the Divine Madman, Phallus Bar or anything about Bhutan. But aren’t you glad you do?