But it was only after my diagnosis of Still’s Disease, that I discovered exactly what this term meant for the chronic disease community and why. Below I explain this in more detail and shed light on what rocket building can teach us about chronic disease.

From Capitalist Economies to Chronic Disease

First anticipated by Karl Marx in the 19th Century, the boom and bust cycle describes the typical pattern of high and low economic performance experienced by modern Capitalist economies. The cycle is driven by several factors including market demands, consumer psychology, and government intervention. For the purposes of this article, we won’t delve into these factors too deeply — rather the point is to acknowledge that the cycle is influenced by many, often interrelated and competing, factors. Usually, this cycle is visualised as a smooth, uniform, and gradual transition between the high and low points of the cycle. Why smooth, uniform and gradual? Because, as you know, we human’s love an over-simplified analogy (something sheepishly I will not hold back from indulging in later in this article). Textbook smoothness is, however, not always representative of reality. In more recent years with the pressures of the pandemic, we’ve seen just how abrupt the boom and bust cycle can be with entire industries being closed or reopened overnight.

It is this latter, more abrupt, cycle that more adequately captures the lived experience of the individual with a chronic disease; who can transition abruptly between high and low experiences of quality of life without notice. It is also important to note that the relationship between high and low points is not often balanced either, with individuals with a chronic disease experiencing more low periods than high (generally) – hence the status of chronic illness.

Applying the boom and bust cycle to my own life

Before getting sick I didn’t really think of days as being ‘good’ or ‘bad’. Each day was relatively consistent, with similar levels of physical and mental capacity that I could rely on. I didn’t think about the profound impacts of physical exertion, the food I ate, the amount of sleep I had, or how daily stress could influence my quality of life for days or even weeks. I didn’t think about these things because the repercussions of the imbalances in my life were minimal — my body recovered efficiently and effectively. 

Now I must face the reality of the opposite being true. Small imbalances can land me in bed for a day, or worse, trigger a lengthy flare. As a result, I am constantly thinking ahead. It feels like anything outside of my protective routine is playing roulette. In fact, sometimes it feels like ‘playing it safe’ is no guarantee of avoiding a bust either. So how should you live your life? Do you shy away from making the most of the ‘good’ days and avoid doing too much, only to regret it later? Or do you go full-throttle and try and get the most out of the good day not knowing when your next good day might be? Or maybe it is more of a delicate tightrope walk somewhere in between? 

In an effort to make sense of this struggle I sought a parallel…  and the inspiration arose from an unlikely source; an event that took place on this very day in 1969 — the lunar landing. 

Why is living with a chronic disease like building a rocket?

During the Cold War, the United States of America and the Soviet Union competed to build a rocket that could take humankind to the moon. The feasibility of such an endeavour was unknown and the success of the competing space programs was not guaranteed. This is where I draw my first parallel. When I was first diagnosed, this was exactly how I felt — recovery was a deep abyss of unknowns and zero guarantees. It wasn’t a matter of when I would get better, it was more of a question of whether it was possible to avoid getting worse.

So given such uncertainty, why did the USA and USSR decide to go ahead with their space programs? Both political incentive and competition were fuelling this fire, and as we have all probably experienced, this is often enough to turn a blind eye to rationality. But putting this cynicism aside for one moment, I believe there was a formidable drive to make the seemingly impossible, possible. Similarly, I would argue that those living with a chronic disease must also have a tenacity for recovery that may defy the rationality of current knowledge.

In addition to this, I believe there are four other useful parallels to explore.

1. Competing financial priorities

Firstly, both countries had competing financial priorities and finite financial capacity. After all, they had countries and economies to run and building a rocket was no small financial undertaking. Similarly, people living with a chronic condition, and the chronic disease sector as a whole, have a finite financial capacity. Unfortunately, like our space programs, financial investment has to be managed against other competing necessities and consequently, this can lead to inequalities emerging.

2. No handbook

Secondly, it had never been done before. Was it even theoretically possible? Which again raises the question of financial viability — how much do you invest into something to find out whether it is theoretically possible and when do you call it quits? Again, a stark parallel to the chronic disease community can be made. Is remission or better-managed health and wellbeing even possible? Should you invest in the known or new frontiers — and where do you even start to answer that question? There is no handbook.

3. The great unknown

Thirdly, if it was indeed theoretically possible, was it practically achievable to build a successful rocket? Which raises the new question of whether it is theoretically possible to make it financially viable to make it practically achievable… and how much time and resources do you invest to find out? These same hurdles are present in the field of chronic disease research, management, and care. And, unfortunately, where to draw the line is simply not simple.

4. Trusting in the process

Finally, establishing that it is financially viable, theoretically possible, and practically achievable do you still go ahead knowing that the entire project is hugely complex and that even the slightest miscalculation or oversight could result in the entire rocket exploding? Possibly the ultimate, and literal, boom or bust scenario.

Continually living through the boom and bust cycle is hard; harder than I can eloquently express in words. But for those of you who may be reading this and can relate, I encourage you to keep fighting for better days. To keep building your rocket. It will be difficult, and there will be setbacks, mislaunches, and compromises, but I hope that you will hold onto the same hope that I have — that with the right team around you a rocket can be made that will allow you to experience a better horizon in the days to come.I leave you with the words of Commander Neil Armstrong, the first man to step on the surface of the moon on this very day in 1969. 

Armstrong was carried by the countless efforts of innumerable people. Similarly the landscape of chronic disease care and management will be changed not by an individual, but by a society who will not accept anything less. 

I was immediately rushed into the emergency department and a cannula inserted swiftly. Shortly after anti-nausea medication was prescribed and administered. The nausea began to settle and that afternoon I was able to return home. At the hospital we were asked if I’d eaten anything unusual, but nothing immediately came to mind. We thought maybe a bad case of gastro. The next day a family member asked whether we’d been to a particular doughnut store near our home. Yes! We had picked up some doughnuts just days before and it has since emerged that between 100-200 people may have been affected by a food poisoning incident related to this store — but that is a story for another day.

As I sat in bed recovering I came across an instagram post about a 40 Year Anniversary exhibition match to be played between the Canberra Knights and CBR Brave the following week. To contextualise why this post stood out to me we have to rewind to before my diagnosis.

Hockey Hockey Hockey

Growing up hockey had been a big part of my life. Amongst the challenges of life and growing up, hockey had been in many ways a sanctuary. A place where I could just be in the moment. I wasn’t the most gifted hockey player when I first started at the age of 9 — but I loved the game and I worked hard each year to improve. That hard work, and many sacrifices from my family and especially mum who drove me to countless trainings and to Sydney each week for several years to play during the season, culminated in the privilege to represent Australia at an u18 and U20 level and to play for the Canberra Knights between 2011-13.

In 2014 the Canberra Knights folded, but the Canberra community rallied together and the CBR Brave emerged. Since 2014 the CBR Brave have become arguably the greatest franchise in the Australian Ice Hockey League (AIHL). When I first became sick I would watch the livestreams of the Brave’s games and dreamed of skating again – and maybe one day even playing one last game.

Fast forward to Christmas of 2019. My family and I were spending the Christmas period with friends in Canada. A few days after Christmas we headed to a local mall as I had been wanting to purchase new skates for some time — parts of my old skates were literally being held together with tape after years of faithful service. It was late, but on the way home from the mall we saw a local park with an outdoor rink and I asked if I could just quickly try my new skates out. We jumped out of the car and I laced my skates up. I was nervous. My body was not in a good place at this time as I fought to manage my Still’s and I wondered how my body would cope.

I stepped out onto the ice.

I began to skate around the rink, and it is hard to describe, but I felt out of rhythm in some ways. I struggled to hold my edges and quickly became breathless and light-headed. But despite this, for just a few moments I felt free from my illness.

A few days later we made the journey to Lake Louise and Jess and I played pond hockey in sub-zero temperatures in the most extraordinary and breathtaking setting. A memory I will always cherish.

We returned to Australia in the midst of a horrendous bushfire season and a few months later the COVID-19 pandemic challenged our perception of normalcy almost overnight. The rink was closed and the hockey season cancelled. During the lockdowns I started Running Rare with the hope of raising awareness of rare diseases and improving my health and fitness — and hopefully one day when the rink reopened to play a hockey game or two.

This rebuild has been tough, but slowly my health has continued to improve. In early 2021 I started running at the weekly Running for Resilience (R4R) social run. R4R has always been my ‘long run’ of the week and I would aim to run 3km (albeit this being 3km shorter than the typical distance run by the group). For over 9 months I struggled to run further than 3km, I think a certain fear of the unknown held me back. I was afraid of pushing my body in case it tipped me over the edge. But a few weeks back I got talking to an incredibly inspiring individual named Cam. Together we overcame that barrier and I ran the full six kilometres. The next week, with the support of Cam again, I managed the full six for a second week in a row. The three-peat was on the horizon and this time I ran with R4R founder Matt. We discussed a few things on our run but one thing that Matt said stuck with me

I think it was these little, but important, wins and conversations at R4R that inspired me to reach out to the Brave about the exhibition match despite the challenges associated with my Still’s and more recent food poisoning. I thought ‘this might be my last opportunity’ and I needed to give it go. I honestly didn’t think I would hear anything back, but to my surprise I received a message back from Brave management saying there was a spot available to play. I couldn’t believe what I had just read! I was over-joyed.

In just one week I would need to recover from food poisoning and organise a registration to play a sport I hadn’t played in seven years. No biggie right…

There were hurdles to registration that couldn’t have been overcome without the kindness of people — all of whom I’ve never met before. Words cannot express my gratitude, especially to Diane and James.

Game Day

The Brave got up to an early 3-0 lead in the first period and I was thinking to myself this is going to be a long game.

In the second period I found myself in front of the net with a perfect pass coming into the slot. The next thing I knew the puck was in the back of the net. What had just happened!? I couldn’t believe it. In a game I never thought would be possible I had scored. Honestly, I had to fight back the tears. 6 years of fighting had led to a dream game and a dream opportunity and it was just a completely emotional moment.

The momentum just kept building and we ended the period 4-3 up. The third period was just as exhilarating ending up in a 6-6 tie in the third. The Brave went on to win the game in overtime but I don’t think you could wipe the smiles off either teams faces.

In the space of a week I had experience a night I never want to experience again to a night I will not quickly forget. To play one last game for the Knights with friends and family and the wider ACT community was a dream come true.

If the night couldn’t get better, after the game a women approached me and said hello. It was Diane! The incredible women that had organised my registration when literally everyone I had spoken to didn’t think it could be done in time.

So in the words of R4R founder Matt, be ready for your opportunities.