What if the Little Old Lady who swallowed a fly didn’t die?

What an unlikely character can teach us about building momentum from humble beginnings

Have you ever thought it strange that you can so easily forget the name of someone that you have just met, but can remember a song you haven’t heard since your childhood?

This has been my exact dilemma. Over the past couple of days, I have had the nursery rhyme There Was an Old Lady Who Swallowed a Fly playing in my mind… repeatedly. Although my word-for-word recollections of the rhyme were a bit vague, I recalled snippets of the song and the general idea of the Old Lady swallowing increasingly large animals to chase the previous animal she had just swallowed. If you haven’t heard the rhyme before, spoiler alert, it starts with a fly and ends with a horse.

The poem takes a culminate structure, building on itself stanza by stanza. When I re-read the rhyme this morning before starting this journal article I was shocked! I realised that my memory had omitted one small detail, the Old Lady’s unfortunate demise. It became immediately obvious why the nursery rhyme is typically interpreted from a negative standpoint and not more widely celebrated as a feat of sheer perseverance and arguably athletic achievement. But instead, we look down upon the Old Lady as she makes poorer and poorer decisions, consuming larger and larger animals until her eventual fate. But I wonder, if we removed the morbid ending to the rhyme, could it stand for something far more positive? Would our Old Lady be elevated to a status of adoration, reminding us of an important lesson about building momentum from humble beginnings? It is to this endeavour that I dedicate the remainder of the article and describe the origin story of Running Rare from a most peculiar angle inspired by our Old Lady.

The Fly

In the first stanza, our Old Lady swallows a fly. This really isn’t a big deal. Maybe it is even a personal feat, likely of accidental nature, that you too can relate to. For all the concerns and worries of life, such an event could easily have been forgotten and not acted upon. In fact, I doubt that our Old Lady even recognised this as the inception of her animal-devouring journey! Similarly, in life, we are presented with these micro-moments of impact. Maybe rather than eating a fly, it is a kind word, gesture, or truth that can either be cherished or quickly forgotten. As I contemplated this, I realised that Running Rare is the result of many micro-moments of impact over the last six years, some dating as far back as a few weeks after my diagnosis. One such moment was when a friend sent me a message that said

I’m not going to attribute intent or meaning to your diagnosis, but I will say that if you’re considering advocacy as part of your road ahead, I reckon you’d be a bloody great awareness generating machine.

Out of all the messages of support I received, this one message has remained vivid in my memory.

The Spider

In the second stanza, our Old Lady swallows a spider to chase the fly. I like to think of this stanza as the next step in the Old Lady’s confidence. She’s already swallowed a fly, a spider is definitely a bit scarier, but it can’t be that much more difficult can it? Similarly, encouraged by my friend's comments, I started writing short posts on Facebook after my diagnosis to keep friends and family updated. This was a little daunting, but it was a relatively safe environment to share my thoughts and experiences.

The Bird

In the third stanza, our Old Lady swallows a bird to chase the spider that is chasing the fly. Again, the bird is just a small step up from the spider, but I believe the past experience of eating the fly and then the spider prepared her adequately for the task. Similarly, my Facebook posts led me to publish my first blog titled Still Timothy Fulton. This blog was both my first journal and the first time I made my experience of living with Still’s Disease publicly accessible. If it wasn’t for the support I received for those first Facebook posts, itself a product of a kind message to advocate for people living with rare diseases, maybe my blog wouldn’t have ever existed.

The Cat

In the fourth stanza, our Old Lady swallows a cat to chase the bird that is chasing the spider that is chasing the fly. From my perspective, at this point swallowing a cat seems more improbable and harder to believe than the first three. Even the smallest of cats would be an incredible feat. But again, swallowing a cat does seem like the next logical step after successfully managing to swallow a bird. As Derek Zoolander would say ‘it has to be at least three times bigger’. In parallel, my cat was starting a 100km running challenge called Running Rare after my relapse of Still’s Disease to raise awareness of rare diseases and the release of the National Strategic Action Plan for Rare Diseases.

The Dog

In the fifth stanza, our Old Lady pluckers up and swallows a dog to chase the cat that is chasing the bird that is chasing the spider that is chasing the fly. Okay, now we’re really heading into some absurd territory. I don’t know anyone who has ever eaten a dog whole! Similarly Running Rare’s next step was the result of the support extended to me by Rare Voices Australia. This support opened the door to attend the Rare Voices Australia National Summit and my story being published in The Advocate. Something I never imagined I would do.

Celebrating 100km in 200 days complete!

The Goat

In the Sixth stanza, our Old Lady decides to swallow a goat (no kidding!) to chase the dog that is chasing the cat that is chasing the bird that is chasing the spider that is chasing the fly. Things have really become unbelievable now! Likewise, a few weeks before Rare Disease Day 2020 I received a call from the local news station WIN asking if I’d be willing to feature in a segment on Rare Disease Day.

The Cow

In the seventh stanza, our Old Lady swallows a cow to chase the goat that is chasing the dog that’s is chasing the cat that is chasing the bird that is chasing the spider that is chasing the fly. This is mind blowing, unbelievable! An entire cow! We have moved from the absurd to the ridiculous. Likewise, from the momentum that had built from Chapter 1 of Running Rare I committed to Chapter 2 the next year. This led to the development of the Running Rare website, and subsequently to my story being featured on HerCanberra. My growing connection with Rare Voices Australia opened a door to speak at their National Conference. This then led to opportunities to speak to two of Australia’s largest pharmaceuticals, Sanofi and Alexion Astra-Zeneca Rare Disease. Concurrently, the fitness I had built up in Chapter 1 provided the launch pad to run 50km further in Chapter 2. This increased fitness then provided me with an opportunity to play in a CBR Brave exhibition match that then led to me playing in my first ice hockey season since my diagnosis, for the bulls of all teams. My cow consumption analogy is satisfactorily complete.

The Next Chapter

If we started at the seventh stanza I wouldn’t have ever believed you. But with the gift of hindsight, we see how a small action triggered a cascade of events in both the Old Lady’s life and my own. Now just a few weeks out from starting Running Rare Chapter 3 I can’t believe the journey that has already been, and the journey that lies ahead. If I am completely honest, I started writing those initial Facebook posts because I wanted to do something to raise awareness of rare diseases, but had no idea where to start. Now looking back I see how the fly led to the cow and all the steps and people that were needed in between. Too often we find ourselves in a rush for progress, but the Old Lady has taught me the importance of taking it one step at a time and being okay with not knowing where the path of our lives may lead. She has also taught me the importance of looking back once in a while and appreciating the opportunities and people who have supported me along the way.