Resilience is important but it’s tiring

Brigid O’Dea: With hidden disabilities, our pain is often not recognised and our achievements can feel undervalued

I am always fascinated by the resilience of humans.

Corinna Luyken writes in the children's picture-book, My heart:

There are days it’s a fence between me and the world,
Days it’s a whisper that can barely be heard.
There are days it is broken
But broken can mend,
And a heart that is closed
Can still open again.

I recently had a skin graft whereby skin was cut from my fleshy inner arm and transplanted to the intricate helix of my inner ear. Both sites have healed happily, making no fuss of the departed nor the new arrivals, happy to go about their daily business as normal.

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I like my scars. Perhaps terribly obvious, but I like the visibility of the pain. A flag of my resilience: “Look! See how tough I am! View the pain I experience”.

We don’t often consider in the dialogue of chronic pain how scary pain can be. When experiencing acute pain, at times I find myself terrified by the total envelopment of it, afraid that my brain will be damaged by the trauma. To undergo a level of pain so extreme and emerge free of harm feels impossible. I am surprised then at the resilience of this complex organ as I ‘return back to earth’ to find my steely brain still ticking.

When it comes to hidden disabilities, as our pain is invisible, often our resilience goes unnoticed. When our pain is not recognised, our achievements can feel undervalued. What is seen is the final result and not the faulty tools used in the making. Of course, this is not unique to invisible disability, many people are fighting battles unbeknownst to us, carrying burdens we don’t see or don’t pay attention to. We can all lose sight within our own silos.

In a Ted Talk, that I’ve long since forgotten except for the following image where the speaker analogised; “it’s not about whether the glass is half full or half empty but for how long you are left holding it”. I never mind pain when I know it will end.

My threshold is high.

But the longer you are encumbered the harder it becomes to endure; pain wears you down. Humans, studies have demonstrated, can endure pain for a long period of time through cursing, grunting or shouting. And perhaps this is what this column is, one long grunt.

Resilience, however, is not defined by how long one can endure pain. It's not feeling Lizzo's Good as Hell every day. In fact, we need to crumble. My dad often reminds me that cutting onions is cathartic; our watery eyes afford us an excuse to shed some unwanted emotion. I, myself, find a Dublin Bus cry - the 130 weep - cathartic. When it comes to my writing, I find it better to dump than to agonise over edits; the bad bits are never fully re-worked. In this way, sometimes we need to allow ourselves tumble to pieces, to be overwhelmed by emotion, release the 'bad bits' so we can start again from scratch. Resilience is the ability to pick yourself back up after these falls; to get knocked down and get back up again.

And it’s tiring. The heart must learn to keep her needle and thread close by. To live a life with gumption requires inner grit, steely determination and a robust spirit when your body refuses to carry you. Simple tasks require herculean effort. Seven days later I am still dutifully recovering from a party last week. The past few days have seen protracted periods of bed, as a means of sleep and an escape from pain. Hours of nothingness have dragged by. And yet, it was worth it. We all have to protect our hearts from breaking, but so too must we give them opportunity to fill.

I often bemoan that the morning is one of the worst times of day for me pain-wise. I wish I could wake up embracing the new day, feeling sunny and hopeful for what lies ahead. Instead, I am met with heaviness, difficulty waking, dense pain and uncertainty as to how the day, or the pain, will develop.

I’m required to draw deep in order to rise and smile and face the day with the gusto it behoves. To repeat this day after day, the burden of holding the half-filled glass becomes ever more exhausting.

And there are many people for whom this is their reality. For whom the simple act of waking comes with unthinkable strain. While it is important to acknowledge the pain that we do not see, it is equally important to acknowledge the unseen resilience that comes with trucking on in the face of it.

Let us acknowledge the invisible victories!