Finding grace on the bad days of myeloma caregiving

As I write this, yesterday was Tuesday. Perhaps it was a great day for someone who got a promotion or received a gift. But for me, it was a bad day.

Yesterday, as I had my morning coffee, I felt a kind of dread. As the day unfolded, it felt like a stubborn stain that refused to be scrubbed out.

My mum wasn’t just experiencing the regular discomfort associated with myeloma; she was complaining of a great deal of pain in her joints. I didn’t just feel irritated; I was angry. My phone calls with the insurance company were going in circles. By 1 p.m., I had snapped three times at our dog, and by the evening, I felt like a complete failure, as if I hadn’t succeeded at the things that mattered.

I used to believe I’d always discover a lesson on the other side of a bad day like Tuesday. Now, I realize that some days don’t arrive with lessons in store, just an unbearable burden and relentless chaos. The most important thing you can do on such days is to do everything in your power not to add your own disappointment to the mix.

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Letting go of my standards for good days

Recently, I’ve had to unlearn many things, including the idea that a good day is the main goal. For a long time, I chased this goal. I strongly believed that if I smiled often, stayed organized, remained dedicated to all my repetitive routines, and worked hard, I would successfully transform my journey as a caregiver. I thought I could create a more manageable and noble version of myself by doing and being all of that.

I thought wrong.

Chronic illnesses like myeloma have no respect for these kinds of neat ambitions. They have their own rhythms and weather. A bad day is not a reflection of failure in my efforts or attitude. It is simply me passing through a storm, learning how to sit through heavy rainfall without blaming anyone (including myself) for the rain clouds.

The unexpected sanctuary

Something small happened in the middle of that difficult Tuesday. After the last frustrating phone call, I just sat down on the kitchen floor. I didn’t scream or cry, I just stopped doing anything. My mum was seated in her chair. Even though she could see me, she didn’t ask what the matter was or offer a pep talk, as she’s fond of doing. Rather, she looked me straight in the eyes and said, “It’s a lot, isn’t it?”

That was the moment I discovered a weird sanctuary — one of shared surrender.

My mum and I weren’t fighting through another bad day. Instead, we were just in it, together. In such a situation, one can discover profound grace. It is the grace of permitting the mask of coping to fall off and discovering that even in your unraveled state, someone still loves you, still sees you, and still appreciates all the invisible things you’re doing as their caregiver.

A softer measure

This is why I approach my assessments differently these days. A successful day is no longer one that doesn’t contain any hardship. Rather, it’s one where my mum and I both display kindness to each other, even when our hearts are filled with sadness.

A successful day is one where I permit myself to feel overwhelmed but don’t regard it as a personal failure. It’s a day that reminds me that the mission has never been to display perfection all the time, but rather to always be present.

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