Small acts of defiance are the ways we push back against disease

I watch my mum reach for her favorite scarf and carefully drape it around her shoulders.

The gesture is ordinary, almost automatic, yet in this house it carries a quiet weight. Myeloma has taken so many things — strength, certainty, the easy freedom of movement — but choosing the scarf is a small refusal. It is her way of saying that color and dignity still belong to her. I recognize the moment for what it is: a tiny act of defiance.

We have collected many of these acts over the years.

Some belong to her. She insists on sitting at the table for meals instead of eating in bed when she has the energy. She asks for music she loved before the diagnosis. She teases me about my cooking with the same dry humor she has always used. Each choice pushes back against the narrowing that illness tries to impose.

Some belong to me. I refuse to let the sickroom become a place of only medical objects. I bring in fresh flowers when I can find them. I open the curtains fully so the morning light reaches her face. I cook a dish she once enjoyed, adjusting the texture so it remains possible for her to eat. These are not cures. They are small insistences that life still contains more than symptoms and schedules.

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The defiance is rarely dramatic. It lives in the details. A shared laugh at an old family story. A decision to sit outside for 10 minutes even when the effort is real. A refusal to cancel a short visit from a trusted friend simply because the day is difficult. These moments do not change the medical reality. They do, however, change the emotional climate of the day. They keep a little space open for something other than the disease.

I have learned to notice and protect these acts.

When she reaches for the scarf, I do not rush to help unless she asks. When she wants the music a little louder, I adjust it without comment. The defiance works best when it is allowed to remain hers. My role is often simply to witness it and to make room for it.

There are days when defiance feels harder to find.

Pain or exhaustion can shrink the available choices until even small refusals seem impossible. On those days we scale them down further. A few sips of a preferred drink. A single photograph placed within view. A quiet conversation that avoids the subject of illness for a few minutes. The size of the act matters less than the fact of it.

These tiny rebellions have become part of how we survive. They remind us that myeloma may shape the days, but it does not get to write every sentence. Between the medications and the monitoring, we still choose color, music, humor, and presence. We still claim small territories of ordinary life.

I no longer underestimate their power. A scarf, a song, a shared smile — each one is a quiet declaration that we are still here, still ourselves, still capable of pushing back in the ways that remain open to us.

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.