boys on bus

Living with agoraphobia: an immersion essay

There’s a tingling in my fingers and it’s not from the alcohol. I don’t belong on this dance floor and these kids know it. What do most people do when they find themselves in the middle of a herd of sweaty, cocksure teenagers? If I were their age I suppose I’d go with it — throw my head back and just be. But I’m not their age. I’m not even from the same galaxy. They tower over me — a different species — as if anyone born after the year 2000 was endowed with superhuman height.

Must be the millennial bug.

There’s the familiar stench of body odor and frothing hormones that conjure memories: the mid 90s, football halls crammed with staggering, sloshing teens bobbing their heads to Foo Fighters. But now … here … I’m an imposter. My breathing is unsteady, my heart throbs at a staccato, racing to match the pulse of the music. Become the pulse, feel the music. The music surges skyward and I wish I were lifting with it … up and away. But instead I am shrinking and certain that some unseen, enormous hands are closing in — fingers splayed, invented for smothering.

I watch as one of the male creatures pirouettes into my space — not before glancing down to check if I’m real. He’s been baptized with Hollywood looks, vigorously gay and comfortable in his own skin. He wears a polyester blue shirt fastened with bubblegum braces and his hair’s a shock of wax chocolate.

There’s an amused expression plastered across his face, as if studying an oddity — a man out of time. And I am. I’m a time traveler.

The young man cranes his neck. From this close I can see a hint of mascara and some glitter peppered across his right cheek. Then quite suddenly, he contorts his face and gyrates around me — striking ostrich poses, his neck doing things my arms could only attempt. Ignore the cartoon, I tell myself. Ignore the dread — the true provocateur — but it’s too late, fear is out of its cage. I close my eyes.

and reflections of my late father

Enlight9

This weekend marks the 4-year anniversary of my father’s death. Dad died in July 2014 at the age of 65 from ‘Pick’s disease,’ a rare form of progressive dementia involving localized atrophy of the brain. His symptoms all pointed towards early-onset dementia, and we only learned of his true diagnoses a year after his death.

My father was a hardy Irishman and an outdoors-man. If he wasn’t rounding up cattle, constructing a fence or creating a vineyard (to perfection mind you) he was pouring everyone a drink and spinning a yarn … the time he built his own river boat and treated his sister to an ‘adventure down Abbey river.’ Musings of tomfoolery and even tragedy — but always sprinkled with that sharp Irish wit and narrated with an infectious, barrel-chested laugh.

For some reason I think of the lyrics from Working Man by The Dubliners …

He can take you back in time, tell you of the hardships that were there. It’s a working man I am and I’ve been down underground …

My father was that spirited working man, through and through. At least until his brain began to shut down, one compartment at a time.

I first noticed it when he failed to recognise his favourite coffee mug. My mother just shot me a worried look and blamed it on the wine. Then his moods became erratic, yo-yo-ing between passive and detached to uncharacteristically aggressive.

We were none the wiser.

dementia

While families wait for a cure their loved ones are slipping away before their eyes

How can anyone know when a loved one is slowly vanishing? When their walls of perception are crumbling down around them and their anamnesis is being hijacked — the recollection of an entire life suddenly spirited away by some unseen thought thief.

How could a man who was larger than life, who was a source of such humour and wit, be reduced to this? When someone close to you develops dementia, you naturally want to understand why it’s happening … so you start to dig, you do your research.

The New England Journal of Medicine characterises Alzheimers’s disease as the deposition of amyloid-beta (Aβ) plaques in the brain.

But that description doesn’t help much unless you’re a neurologist or have a profound understanding of the human brain. And with so many cooks in the neurological kitchen, waiting for a cure is like waiting for a divine miracle. And most trials are unsuccessful.

And why our healthcare system isn’t helping

Grace sad image

We had a deal. Had created a system for when she was feeling ‘under the weather.’ In fact, it was a code for when she felt suicidal, a simple text message that used a hurricane category scale system.

If Grace was feeling blue but it wasn’t too serious, it was a Category 1. Winds were picking up and there might be some falling debris, but usually some music or a silly movie could calm things down.

If it was a Category 2 or 3, I’d start to worry. Sometimes she’d text: Category 2 … I think, maybe worse. Definitely strong. And I’d wait to hear back, hoping her foundations wouldn’t be ripped from the earth, all the while knowing she was in a dangerous sway towards a free-fall. Often a hot chocolate and a long chat would do the trick, and I would feel a swell of relief that she was stable, calm and safe.

But if it was a Category 4 or 5, things were serious. This was when the storm was rushing around her, and her fragile frame was being shaken apart, nearing total collapse. This was when she was heading for a complete ‘outage,’ where her foundations and her entire world was suddenly plunged into an all invasive darkness where nothing could escape.

There were a few rules with a Category 5. She would need to speak to Lifeline or call her dad or a friend, any hour of the day or night. Grace thought the hurricane system was a good idea. I remember her saying … “Jake, you don’t have to worry … I’m not going to do anything silly, I promise.”

The following Tuesday I received an out of the blue Skype call from a friend in London. He asked me if I was sitting down, and told me that he had been contacted by Grace’s boyfriend Peter. And then he dropped the bomb …“I’ve got some sad news man … Grace killed herself.”

My world did two things in that moment. It spun in circles and the walls came crashing down. I hung up without a word and sat there staring at a blue screen. Gutted and in shock.

I was a week away from moving to London. One week. This was not for a holiday, this was to start a new life, to try something new. And now I had to fly to Hobart and attend my best friend’s funeral, before I even had a chance to understand what was happening.

I booked a flight and was in Hobart 2 days later. I was given bogus directions and arrived late, but eventually I discovered her family and friends gathered around a small plot at the back of the cemetery. Grace’s little sister was crying and leaning over her grave. I watched as she dropped several roses over the coffin. It was everything you would expect a funeral to be … it was even raining.