Understanding the geography of my mum’s sickroom

If you are not a caregiver, you could easily mistake a sickroom for just a room. But a sickroom isn’t an ordinary room; it is a whole world.

My mum has myeloma. Since becoming her caregiver, I have lived with her in different sickrooms in different hospitals. In that time, I have come to appreciate their geography.

I regard the chair by the bedside as my continent; its cushions have been molded into the shape and contours of my vigilance. In the corner, there’s usually a nightstand. To me, it’s a peninsula whose shores are rarely clean and pristine. Instead, they’re littered with artifacts used to navigate the unexpected challenges of caring for someone with a rare cancer — a half-empty glass of water, pill bottles, a tangle of chargers, a laptop I use to compile test results and do admin work.

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You’d be wrong to think the weather in this sickroom is the same as the weather outside. The sickroom has its own unique climate. Most of the time, the air feels still and thick, and the temperature is too warm. It always smells of medicine, and the sunlight is muted. Time also behaves differently here, contracting and stretching. In the sickroom, time isn’t measured by clocks, but by the IV drip, the intervals between medication doses, and the rhythm of my mum’s restless sleep.

The central landmark of this world is the bed where my mum lies. It’s like an island that no one can visit, where she is always drifting on the shores. My whole life, my entire existence, has been reduced to what happens inside the walls of her sickroom. I have become an expert at decoding its maps. I know the language of a sigh and what it means when her blanket shifts. Even when her face is turned toward the wall, that behavior is significant in a way only a caregiver like me can understand.

Inside our own world

This universe is intense and small, and I am its keeper. I don’t just keep up with breakthroughs in cancer research; I also chart the pains, documenting any signs of improvement while predicting the storms. Governing this world can be a lonely job; however, it is the world my mum inhabits, which makes it the most important place on earth.

If I dare to venture out of this room, I step into a foreign land where life moves at a speed that feels careless and jarring. I am always pulled back to the quietness, to the chair by her bedside, to the center of this world where my presence is needed.

Even though I might feel both relieved and guilty when she’s asleep, I still prefer being in this sickroom. It might be small in size, but to me, it contains an entire ocean of fear and love. Although I’m unlearning so many things, I am also learning how to navigate the depths of this ocean every day as a caregiver.

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