When I think back on my the period of my life where I was transitioning from ‘healthy’ to ‘chronically ill’, I have a very vivid metaphor in my head…

All my life I’d been building a tower. I’d been given the blueprint when I was growing up – a set of expectations for how the tower should look, and what order the bricks should be laid in. And up until the point that I got ill, I’d been laying those bricks exactly to plan.

I’d laid a foundation of ‘education bricks’, upon which a successful tower would be built. I’d laid my bricks labeled ‘family’, ‘friends’, ‘internships’, and now ‘first job’, held together by mortar of emotional and social health, and my tower was starting to look good.

I expected that next would come ‘promotion’ or ‘new job’ bricks, maybe followed by ‘relationship’ and at some point in the future maybe ‘marriage’ and ‘first owned home’ bricks.

Instead my illness came along like an earthquake bringing the bricks tumbling down. It turns out I build my tower – my life – on unsteady ground.

I lose my job, and with it the ability to add those career development bricks. Without a job or career I can’t add owning my own home or being financially independent. I lose many of my friends and my social life, which undermine the mortar of my emotional and social health, so the bricks that weren’t destroyed aren’t holding together.

The ground beneath my foundations – my health – had been shaken and disturbed, so that those bricks that had survived, like my foundation of education, are no longer even and useful.

So now I’m left with chunks of bricks – those things I still enjoy, and which I aspire to do each week, like exercising, getting out into nature, cooking and spending time with my niece and nephew. In lieu of mortar, those stones are supported by the buttresses of my partner and my family, who provide money, time and emotional support, something many don’t have the privilege of. They steady my small pile of stones as the ground beneath it moves and shifts unexpectedly, and I fight to keep putting the pieces that fall keep falling off back into the pile.

This constant battle has little reward. Celebrations come in the form of whole days or weeks where the pile has stayed steady, and the work I’ve put into maintaining it has paid off. But there’s always a threat that a fresh earthquake, large or small, may come soon. Maybe it’ll be later today, or tomorrow, or next week, next month or next year.

I am fearful to add new bricks to the pile, less it brings it all tumbling down again. Yet a life spent trying to maintain this pile of rubble, this meagre representation of what I’ve achieved, leaves little in the way of motivation.

But I keep on – we keep on – fighting for our bricks. Some of us manage to find enough stability to add a large brick like a job, though many will find its weight too great for the pile underneath. We may choose to add ‘children’ bricks, even if though we know it will risk everything we’d gathered and maintained before, and even if we risk this same journey happening to them too.

People around us say we’re brave or an inspiration, but when I look at my pile of bricks and stones I can’t help but feel sad. I resent the time and effort I have to invest to keep this small pile together, leaving no time or energy to grow it. I mourn the tower I was raised to expect, and I wonder, will it ever be anything more?