The Fire That Flickers: The Great Battle of Microvascular Brain Disease

What Illness Can’t Touch - The Mosaic of Mum

Do you know someone living with microvascular brain disease? A parent, a partner, a friend who’s slowly changing in ways that are hard to name but impossible to ignore.

Witnessing it is messy, heartbreaking, strangely beautiful, and full of moments that crack you open and stitch you back together.

So, with that, let me tell you something about my mum.

She’s not the kind of woman who goes quietly into anything. Not into a room, not into an argument, and certainly not into illness. She’s the kind of person who will tell a doctor what medication she needs before they’ve even finished their sentence. She’s fierce, stubborn, and so certain of her convictions that even Google occasionally backs down.

So, when microvascular brain disease crept into her life, quietly, insidiously, it didn’t stand a chance of being acknowledged. Not at first. Not even now, really.

She refuses to go for tests. Won’t set foot in a hospital unless dragged. She’s convinced she knows what’s wrong, what’s right, and what’s unnecessary. In her mind, treatment falls squarely into the “unnecessary” category. “I’m fine,” she says, even when she’s clearly not. “Hospitals are for sick people,” she insists, as if her body hasn’t been sending her postcards from the edge for years.

It started with small things. A forgotten word here. A stumble there. Moments, she brushed off with a wave of her hand and a sharp, “I’m just tired.” But I saw it. The way she paused mid-sentence. The way her eyes searched for something that used to come easily. The way her body, once so quick to move, began to hesitate.

She hates it. Hates the slowness. The fog. The betrayal of her own body. True to form, she fights it, not with resignation, but with resistance. She argued with doctors and refused to let this thing define her. She absolutely refuses to let anyone treat it.  Unfortunately, illness doesn’t care about pride. It doesn’t care how many wonderful meals you’ve cooked or how many battles you’ve won. It just… arrives and stays.

Watching her navigate this has been like watching a wildfire learn to flicker. She’s still Mum, still opinionated, still hilarious, still the queen of unsolicited advice, but there’s a new softness now. A vulnerability she doesn’t name, but that I see in the quiet moments. When she grips the counter for balance. When she forgets what she was saying.  Then there’s the childlike shift. The way she giggles, speaks or hums to herself.   It’s sweet. It’s strange, but it’s also heartbreaking.

Her hearing isn’t great anymore, but she won’t admit it. If she doesn’t catch what I’ve said, she’ll tilt her head and say, “I wasn’t listening.” As if selective hearing is a lifestyle choice. As if admitting she’s struggling would give the disease too much power.

And her moods? They shift like the weather. Some days she’s playful, sharp, and full of sass. Other days, she’s withdrawn, irritable, or lost. I never quite know which version of her I’m going to get. It’s like spinning a wheel, will it land on laughter or silence, warmth or resistance? But I hang on anyway, because I love her, because she’s still Mum, even when the edges blur.

Sometimes, I wonder how hard it must be for her. How terrifying it must feel to be changing, to feel your mind and body slipping, and not be able to stop it. To know something’s wrong but refuse to name it. To feel the world shifting under your feet and insist you’re standing still. That kind of fear must be exhausting, and lonely.

We’ve had to learn a new language together. One that includes rest. One that makes space for forgetfulness without shame. One that allows her to say, “I’m tired,” and for me to hear, “I’m scared.” Even if she’ll never say it out loud.

Yet, through it all, she shows up. For me. For our family. For herself. She still makes her coffee. Still folds towels with conviction. Still tells me “I’m strong and independent” and that “I can do hard things”. And when she can’t do something, she pretends she didn’t want to anyway. That’s her version of surrender, strategic denial.

There’s a strange kind of grace in this chapter. A tenderness I didn’t expect. We talk more gently now. We laugh more easily. We cry too, sometimes together, sometimes separately, but always with love. When I’m unwell, my mum becomes a force of nature. No matter how long it takes her to shuffle down the passage, she’ll make her way to my bedroom, determined, defiant, and deeply loving. She gets cross if I don’t rest, keeps tabs on me like a hawk, and somehow still manages to be the one offering comfort, even as her own body betrays her. Her care is stubborn, fierce, and beautifully maternal. Microvascular brain disease hasn’t dimmed her instinct to mother me, it’s just made her love louder.

We need to remember that our loved ones are more than their diagnosis. My mum is more than her microvascular brain disease, she’s a mosaic of stubbornness, laughter, and history. Her defiance isn’t just resistance; it’s a fierce kind of autonomy. Even as the disease reshapes her days.  I choose to see her whole, to honour the stories that came before the scans.

Microvascular brain disease may have slowed her steps, but it hasn’t dimmed her fire. It flickers, yes, but it still burns, and I will sit beside her, match in hand, ready to relight it whenever she needs.

If you’re reading this with a loved one in mind, someone who’s stubborn, scared, or slowly slipping into a version of themselves you don’t quite recognise, I want you to know that I see you. I know how heavy it is to love someone through the fog. I know the ache of watching them resist help, the helplessness of not being able to fix it, the quiet grief of change. You’re not alone. You’re doing better than you think. Your love, your presence, matters more than you’ll ever be able to measure.

If this story resonates, share it.
Share it with the sister who’s quietly grieving, the friend who’s afraid to name what’s changing, the caregiver who needs to feel seen. Let’s build a space where stubbornness is honoured, vulnerability is welcomed, and love is louder than diagnosis.