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.

Why marvelling at nature might be exactly what you need

mwt-IMG_0569

There are some things in this life that are worth connecting to. Mysteries that boggle the mind, secrets that cause the mouth to gape open and our eyes to widen, and enigmas that offer some respite from our daily grind.

Things that are bigger than us.

In 1976 an African American kid from the Bronx was fresh out of high school with dreams of becoming a scientist. He was just seventeen when he sent off his college applications and was soon accepted to Cornell University in Ithaca.

What the young student did not know, was that the admissions office sent his application to Carl Sagan, who was not only a famous astrophysicist at the time but was also the leading Professor of Astronomy and director of the Laboratory for Planetary Studies at Cornell.

Shortly after, Sagan sent the young man a letter offering to show him around the labs on campus.

Letter to Tyson from Sagan new

The excited young student had to pinch himself. After all, Carl Sagan had been one of his heroes since he was eight years old. He met Sagan two weeks later on a snowy Saturday morning and was given a tour of the labs. During the tour, Sagan handed the young man a signed copy of his book, “The Cosmic Connection.” When the student opened the book he noticed it was inscribed “to a future astronomer.”

inscription Sagan

At the end of the day, Sagan drove the young man back to the bus station. The snow was falling harder and it looked as though the roads might be closed. Sagan wrote his home phone number on a piece of paper and said, “If the bus can’t get through, call me. Spend the night at my home with my family.”

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.

Why you should give up the need for validation

digital-man

You want to be popular, you want people to like you and that’s completely normal. Maintaining a healthy self esteem is vital. In fact, it’s becoming even more important as our society grows ever more competitive. And yet, the race towards popularity comes with some adverse side-effects, such as depression, alienation and anxiety. Being ignored can be just as painful as being rejected, and it’s exactly why external validation has become the latest ‘psychological drug,’ administered online by trained App Developers.

Your self image is exactly what fuels social media companies. It’s why they re-purpose language (like, follow, friend, love) and it works perfectly — for them. They understand that people have a need to control painful feelings and prove their worth. It’s why you make posts, it’s why you upload selfies to Instagram, and it’s why you use social media in the first place — to be seen, to have a voice, and to feel that buzz that comes with each like. But it’s also a behavioural pattern that many of us aren’t aware of.

Loneliness, guilt, anger, acceptance, fear of failure, fear of rejection … all these emotions play an integral part in the quagmire of validation.

Elizabeth R Thornton calls these patterns our ‘mental model’ — our deep-rooted ideas and beliefs about the way the world works and how things ought to be. It means that we expect certain results from the things we do, say, create or share. In fact we are predisposed to seek validation and this influences our behaviour, and as Thornton explains, these mental models can keep us trapped in old ways of thinking.

External validation is just one of these models, as is perfectionism and control. In Thornton’s ‘Objective Leader Assessment’ survey, 55% percent of people responded that their self-worth was often, more often or always tied to what others think. There are so many people busy projecting an image of what they believe others want, that they rarely stop to consider their own unique qualities and gifts.

kid

We want to feel included and important … seen, heard and ‘liked.’ And it all starts in childhood.

Children seek attention as a survival instinct. They want reassurance that they are loved, protected and secure. If they’re hungry they might cry or slap the wall with mash potato, if they’re fearful or angry they might lie or throw a tantrum. We expect this from children — but when adults play attention seeking games it’s seen as a form of manipulation. However, if this need for validation is something learned, then it is directly connected with how our brains work. In fact, studies have been made to show how the reward part of our brain is more active when others agree with, or reinforce, our own opinions.

In 2010, a team of researchers from University College London and Aarhus University in Denmark investigated brain activity in relation to validation, and published their findings in the journal Current Biology. They took 28 volunteers and asked them to make decisions based on a selection of musical pieces. Once their opinions had been recorded, they were informed of the ‘experts’ opinions, and discovered that when participants opinions coincided with these experts, the area of their brain associated with reward lit up like a Christmas tree. Soon after, volunteers decided to change their choices to reflect the expert opinions.