The Roller Coaster of Congenital Heart Disease (or Pushing a Boulder Up a Hill)

I'm still alive. Barely. This has been a shitty year.

I'll get you caught up since we last spoke in February 2017. I ended up getting (what seemed on paper) an awesome job at a prestigious organisation. It wasn't in reality: neither awesome or prestigious; and I never got the chance to truly do the job I was hired for. A more accurate description is chaotic, a lost cause. I was there for approximately 16 months. Why did I stay there that long, after I had gauged the level of chaos within four weeks of having arrived? I don't give in that easily. I'm a dog with a bone. If you have a problem, I'll work my ass off to try and fix it because that's who I am. Maybe I shouldn't get that emotionally involved or have such high expectations of organisational structures or people? But that's not who I am, I don't put up with half-arsed and I care about the quality of work I produce and the impact I have on others. I want to contribute, make life better for others around me and leave my corner of the world that little bit of a better place than what it was before. 

It was weird, that place was so seductive, its people with such compelling stories and promises, with a decent job description, pay and benefits package and the promise of things getting better. I was lulled into a false sense of security that preyed on my loyalty, hard work ethic, commitment and natural inclination towards problem solving. It was like an abusive relationship: I kept on going back because I was promised things would be different next time, but they weren't. In fact they kept getting worse.

Something I haven't experienced before is the chronic stress element. It differs from standard stress, where you get pushed for a short period and then the valve is opened to release pressure and you get back to an even playing field again. Instead, chronic stress builds up over an extended period of time, constantly rising until something massive, like Chernobyl happens. There's warning signs, but you're so used to the stress and long hours (because that's your standard level of operation now) that you ignore or try to poorly manage the warning signs...and then BANG!

16 months of chronic stress and three heart incidents later, I accepted my reality: either that place was going to kill me, or I quit. I did the latter and I've been off work and recovering from my last incident for five and a half months already. I'm still angry though. I'm angry at myself for putting up with bullshit and not being kind to myself. I'm angry at the organisation and its people that didn't perform their duty of care. 

I sometimes forget that I have limits, that my heart and energy levels aren't as strong as someone who was born without heart issues. I forget because I can't sit idle waiting for my condition to claim me. I want to live my precious life and enjoy it just as much as anyone else, I want to challenge my mind and offer value to others without constantly thinking about illness or death.

But now I'm giving myself time to decompress and reflect. I'm learning my lessons and implementing strategies to better manage myself and my health. That's the beauty and often frustration of life: the power of retrospect and growth as an individual. Its a gradual, cumulative and an imperfect process.

I was incident free for over 3 years post having my defibrillator inserted. Then the job with the chronic stress happened and so did these incidents during extreme and prolonged periods of stress and exhaustion:

• Cardiac arrest, one appropriate and successful defibrillator shock to revert ventricular tachycardia  - six months into the job
  
• Atrial fibrillation, hospitalisation with transoesophageal echocardiogram (TOE) and cardioversion - nine months into the job
• Cardiac arrest, six consecutive and appropriate defibrillator shocks, with sixth successful in reverting ventricular tachycardia; cardiothoracic surgery for defibrillator replacement, medication change, rehab - 16 months into the job

There can never be definitive reasoning as to why these incidents happen, but doctors have a good idea. Stress and depression don't help, studies link these clearly to arrhythmias, particularly atrial fibrillation. Having congenital heart disease doesn't help - fucked heart from the get go, which puts patients into a higher risk category of having more complications or issues throughout their life. And finally scar tissue from open heart surgery can also cause arrhythmias. Or maybe it was a virus that weakened and affected my heart? Take a pick, I've had it all. And the severe stress and exhaustion made it so much worse.

People particularly in this modern day and age want a quick fix, a one pill solution, a reason they can grasp onto and fix. The best unsolicited advice I got from a family member recently was to fix my diet. I guess I shouldn't eat that donut or worry about all the other factors that come into play? Fuck it, I'm eating the donut.

One of the hardest things in this life is to live with uncertainty. People try to help, to simplify, to process.

There's limitations and doctors aren't gods. We're also all different constitutions that have our own way of ticking and working with genetic and environmental factors coming into play. The way modern health has advanced and information is disseminated makes us have a collective cultural mindset of being invincible and immortal. We're not and we don't have all the answers. Nature and life are both a beautiful and ugly miraculous mystery.  

I've been here before. I've been through this. I've got this. This wasn't my first cardiac arrest and it's probably not going to be my last.

I get moments of emotional weakness and complacency too. After my first out of hospital sudden cardiac arrest in 2014, I satiated my uncertainty by convincing myself that it was most likely a one off random event and the defibrillator was my insurance policy. I know better now. It's my survival mechanism. Until other heart complications; or other health issues or old age get me, just like any of us.

The last year and half has been at times a horrible nightmare; and at others a beautiful ethereal dream. 

In their book 'A Beginner's Guide to the End', Miller and Berger briefly talk about major chronic diseases and their patterns. They describe heart disease as having the pattern profile of a roller coaster. That's right, with the constant ups and downs, with good periods and bad ones. Where you're in hospital feeling rubbish and terrified for our life one day and the next you're recovered (for now), elated and discharged to go home to resume your normal life.

That's been my year. And here I am again, picking up the pieces and getting on with it. But it's alright, I've got this. I told you: I've been here before. 

It's familiar, but I wouldn't say that it gets easier. The darkness in my mind is real, with the insomnia and the sheer terror of going to sleep because I think I might die during the night. And the anxiety is taken up a notch or five now. Not only from the panic of dying, but I'm also emotionally paralysed from entering the work place again because I'm traumatised from my last job. 

There's a Greek myth that stuck with me recently: the story of the great Corinthian King Sisyphus. He was so cunning that he captured and escaped death. For this, he was eternally punished in Hades to push a boulder up a hill, which would then roll down upon reaching the hill's summit. Push, roll, repeat. For eternity. A fruitless and laborious task. A lesson in how we are unable to avoid the inevitable. Death and taxes come for us all.

So here I am, call me Sisyphus. Whether I'm riding a roller coaster or pushing a boulder up a hill, I'm stuck in this perpetual loop with no control, but I keep going. Welcome to life.

Tuesdays with Morrie [an old man, a young man, and life's greatest lesson]

I don't remember the last time I read a book so quickly. Maybe the 900-odd page Game of Thrones tomes I've been reading lately have impeded speedy reading enjoyment, but I breezed through Tuesdays with Morrie within a handful of hours. The book was exactly what I needed in my life now.

I've danced around the issue of death and like most people, unless having dealt with a loved one's death face on, have managed to avoid delving too much into thinking about it, because I haven't had to. You'd think that with my recent near death experience (surviving a cardiac arrest) I'd be all over this shit. I've wanted to be but for the most part, I was so overwhelmingly happy to be alive, that I didn't want to think about death too deeply or too often. Having narrowly escaped death's bony embrace, there were so many other immediate things to deal with and think about. Primarily, how I want to live.

I knew this would be a subject matter I would return to sooner or later...in my own time, when I felt ready. I'm interested in how different cultures deal with and what they believe about illness, the older members of society, mortality and anything else related; but I didn't know where to start, nor did I have the appetite to.

One fateful Monday, strolling through Cronulla beach and its local shops, I popped into my new favourite bookshop. After having read all Game of Thrones books on a digital device, I decided to not do that again. Life's too short to be starring into a screen more than you have to, and I wanted the tactile quality of paper and turning pages in my hands again. So I popped into The Best Little Bookshop in Town and asked for help.

"What do you like reading?" asked the shop owner. I'm not sure I reply. I usually like Paulo Coelho but I've read most of his books. I bought the Amy Schumer book off you the other week. It's not something I'd usually go for, in fact, she makes me slightly uncomfortable but I liked that I read something different (that I thought I wouldn't normally like). And I enjoyed it. There was this other book I really liked but I can't remember the name or author....I like ancient history, fiction, not that much into real life stories normally. "Have you heard of Tuesdays with Morrie? It's an international best seller, but more importantly it's a great book, very popular" he replies. He gives me a brief synopsis. It's about a college professor who gets diagnosed with ALS (a terminal neurodegenerative disease that affects nerve cells in the brain and the spinal cord, where your body shuts down til you can't move or breathe anymore) who reconnects with one of his students after nearly 20 years. The book is about one last 'thesis' they write together, summarising their catch-ups in the lead up to the professor's death. It's about the meaning of life.

Perfect I thought. I'm sick of trying to figure out what the meaning of life is for me. It's a constant work in progress. I need a break. I want to find out what some other bozo thinks about it!

So I smashed the book overnight. I couldn't put it down. And then I cried...ugly crying. And then I took two weeks to read it again, slowly, with great big pauses in between for the thoughts to sink in and to cry some more. I even cried in public at a cafe when I was reading it, I couldn't help myself. I guess it really hit home as it succinctly articulated and cemented many of the thoughts I've been having on the topics of death and living a meaningful life.

Mitch Albom (author) with Morrie Schwartz. Photo by Heather Pillar.

I could go through and list the key points for you in short form below (I highlighted them the second time around), but sitting down now in front of my computer and leafing through the book, I realise I wouldn't be doing the story, author or Morrie any justice. And everyone I suspect, may get something different out of it, so if you're interested and ready to delve into something deeper, it's best that you read it for yourself. I couldn't recommend it highly enough for anyone wanting to live a richer life, but particularly people living with chronic or terminal illness/disease.

If you've already read this book, let me know your thoughts below. Are there any other profound books that affected you and you'd recommend to read?

Working Nine to Five

Excuse my 12 or so month hiatus. I've been back at work and since energy and time are both finite, there's been only so much I can fit into my days. More so, I haven't had anything I've wanted to tell you until now.

Like my psychiatrist appointments, I need some time between "sessions" to experience life and let things ferment, to give myself space for observation and to come up with new conclusions and ideas.

Getting back to work has been great for my confidence. It's given me the chance to connect with lots of new people and reconnect with some old friends. I've really enjoyed being able to delve into and focus on projects and feel the sense of achievement from completing tasks; emotions (control, focus and sense of achievement/completion) not often experienced during parenting.

After two clients and three major projects, which spanned 10 months, I was ready for a break. We decided to go to Europe again to visit family and friends and had a lovely (and tiring because YOLO) six weeks away. I really need to rethink the types of trips we do...but that's another story.

Prior to the trip I had sunk so deep into work that I neglected (regular/scheduled) exercise, I had neglected our family and home, and most importantly, I had neglected myself. Amongst all my responsibilities and roles, it's been hard finding a balance, and this seems to be the constant challenge.

Upon our return to Australia, I was barely recovered from jet lag and I had a meeting for another project. I wasn't ready to start again, I really needed some weeks to myself at home to relax, get back to a new sense of normal and work out (consciously) what my next steps would be. Being a consultant and by nature of the work not knowing when the next pay day will be, I told myself I have to take the work, whatever work, when it presents itself. And so I did.

I wasn't in a good place emotionally or physically at the time but I just thought of the money I'd make to replenish our depleted savings after the six week European jaunt. Again I fell into the consumerist cycle most of us fall into. Work - make money - buy shit you don't need - repeat. Which I can deal with under normal circumstances when I actually like the work and the people that I'm working with, and the buying of the shit is holidays to see loved ones (three of the core reasons I get up with pep in the morning and go to work for). But this time around, there was no pep, there was no zest. Instead there was growing dissatisfaction, constant complaining and increased frustration. I was the furthest I had been from myself for a long time and for this I was really angry.

As the weeks progressed, I began to show my frustration at work and I let people know about it. As my scope at work increased, so did my frustration and contempt. I pushed back and managed to make myself redundant from the project about a month earlier than anticipated. I experienced a set of mixed emotions about this scenario: less cash in my pocket than I had budgeted for and sad about no longer being needed, but on the other hand, I now had a new sense of freedom and excitement for life. A renewed sense of hope.

I made room in my life for what I needed, which is the space and time to re-evaluate what's working and what's not; to structure my life accordingly and find my balance. I realise not everyone is that lucky to have the opportunity to do the same. So for this I'm really grateful.

Thanks for tuning in again.

Greetings from Byron Bay

When my shrink suggested I take regular time out to myself I thought "good luck" and "that will be nice". But months later I went ahead and made it a reality by committing and booking some flights. I didn't give it much thought, just took the action. Days leading up to my weekend away I was getting cold feet and contemplating cancelling. I guess I was fearful of getting out of my comfort zone and to some extend felt guilty leaving my family behind. Now that I'm here, I wish I could go back to those few moments and bitch slap myself! 

Anzac Day got me thinking: we celebrate the sacrifice that people made, essentially we are celebrating their death. So why not celebrate life as well?

To take two days/nights out of normal life, in the scheme of things, is not a big deal, but it can make a massive world of difference. So much so that I've decided to make this an annual weekend away, to coincide with my anniversary of the cardiac arrest and to celebrate living. 

Rest, relaxation, rejuvenation, reflection and taking stock. Whatever form it takes, be it an hour or two taking a long walk, having a coffee, seeing a movie, sleeping in or having some time away; we all need it.