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?

"Get busy living, or get busy dying".

Today marks the one year anniversary of my cardiac arrest. When I woke up this morning, it wasn't the first thing I thought of. As my husband was leaving for work I was about to remind him, but I caught my tongue between my teeth and said nothing.

I have no need to relive the event or period surrounding it. What I have are no feelings. It's not even a memory. It's a tiny speckle in the far distance, of an event my husband has described to me. What I have is gratitude for the memory loss I have surrounding the event and for the psychiatric assistance I've had to get over the resounding post-traumatic stress disorder (PTSD) associated with it. It seems the shrink sessions worked...

Love this Angel's expression: "I have a hammer
and a book, I got shit to do, I'm busy, leave me alone!"

I love the quote from Shawshank Redemption: "Get busy living, or get busy dying". For me, it's become as simple a choice as that. My focus has been on health (healthy eating; exercise; minimising stress; resting, when possible with a two year old) and getting on with life. I'm busy living.

I went to a parenting course some weeks back where they discussed "labeling" our kids. The concept took me straight back to childhood: I was always the sick one, the weak one, I had to be constantly careful and looked after, dressed like an onion so I wouldn't catch a cold, excluded from physical activities and ostracised. I had worked really hard before the cardiac arrest to remove the "sick" label from my identity, and after the cardiac arrest, it was hard not yielding to it again. I realised in that moment I was no longer that sick person with a heart problem, or the cardiac arrest victim, I hadn't been for some time now.

50 Cent puts it well in his song Many Men (Wish Death):

Sunny days wouldn't be special, if it wasn't for rain.
Joy wouldn't feel so good, if it wasn't for pain.
Death gotta be easy, 'cause life is hard.
It'll leave you physically, mentally, and emotionally scarred.

I like these lyrics because they remind me that life is about taking the bad with the good and getting on with it. I'd rather be physically, mentally and emotionally scarred, than not be at all. And believe me, I have plenty of scars!

So to that I say: happy anniversary; and happy living to everyone!

33 Minutes

After my cardiac arrest I was unconscious for 33 minutes before being revived.

In that time you could watch a TV show, with minutes to spare. You could cook a quick meal. You could have a lengthy phone conversation with a dear friend. You could go for a jog, bike ride or swim. Or you could save someone's life.

I just lay there on the floor, occasionally gasping for air and then stopping, lifeless, while my husband Chris performed CPR. He dialed "000" and had the phone operator on speaker. Although he had done a first aid course a few months back, the operator guided him and offered extra support. In the meantime, our 10-month old daughter played on her play mat with her toys quietly, thinking that mum and dad were playing next to her too.

The two ambulance officers arrived, Chris ran to open the door. They continued CPR. Chris described it as a never ending passage of time. For as quickly as everything was happening, everything was simultaneously moving in slow motion.

The CPR wasn't working. It took 2 x 200J shocks and one dose of adrenaline to revive me. Then I was taken to the closest hospital.

What followed was a night of sedation, memory tests, MRI scan, chest x-rays, medication and treatment for aspiration pneumonia. The icing on the cake was the insertion of a single lead, MRI compatible Automatic Internal Cardiac Defibrillator (AICD) in my left submammary pocket.

I was in hospital for nearly two weeks. Plus six weeks recovery and R&R after the insertion of the defibrillator, so I don't unwillingly pull the leads out. Put that in your pipe and smoke it.

That's the technical stuff over and done with. Now I'm at home about 3.5 weeks into that recovery period and dealing with a barrage of (sometimes random) emotions and thoughts.

The latest of which have been irrelevant, trivial details about the event. What do the ambulance officers look like? Where did they park the ambulance? Which of our neighbours in our apartment block were watching as I was carried out on a stretcher and into the ambulance? Was there a lot of traffic on the road? What route did they take to the hospital? What route would have I taken? Did Chris and Zoe ride in the ambulance with us?

Random and trivial and yet all so seemingly important in my mind. I'm not quite sure what picture I'm attempting to paint in my head. One of survival, or the adverse? If things had gone badly, what would the aftermath of my death look like?

So here we are, at the root issue: mortality.

Prior to the cardiac arrest I was terrified of death. When I came to, post the arrest, I felt somewhat comforted because I hadn't experienced any pain. I had simply slipped into an all encompassing velvety, thick, warm darkness. I figured should I be so lucky that I eventually meet my end in the same manner, I couldn't have it any better.

Even so, I now have a whole new set of questions presenting themselves. This is an area and a process I will be exploring in time to come. I did start though by watching this video on TED by Stephen Cave: The 4 stories we tell ourselves about death.

“Death, therefore, the most awful of evils, is nothing to us, seeing that, when we are, death is not come, and, when death is come, we are not.” - Epicurus

In other words:

"Death is not an event in life: we do not live to experience death. In this sense, life has no end." - Ludwig Wittgenstein

What resonated with me is the distinction and complete separation between life and death. For some reason I could never see this previously. Once we're dead, we're dead. We don't know the difference. We ourselves do not experience the loss of our lives and ourselves, it's the people left behind that have to deal with that.

For now I will continue exploring, processing and living my life, and as Mr Cave says in his presentation, ensure to make it a "good story".