I've been rolling this curiosity around in my mind like a piece of melting chocolate on the tongue, its aftertaste lingering long after the moment has passed.
Lately, staying focused on writing has felt like a mental workout. It's like backpacking with three children in tow, each thought pulling me in a new direction. Just as I near the next corner, curiosity rears its head, and off I go, down another winding path.
This is the nature of the brain I live with. Taming it was never an option. Instead, I've learned to live alongside it, to work with it, rather than against it. The urge to control or suppress it, as others have tried to do, only leads to exhaustion. Trying to fit in was a slow unraveling of self. Now, it feels like a homecoming. I've unlatched the gate of conformity, twisted and contorted myself for the last time, and waved it all goodbye.
Most mornings, I wake at 3 a.m., sometimes earlier, sometimes later, depending on how easily sleep found me the night before. In those quiet hours, I envision a wide verandah long gone, overlooking the bush. I imagine judgement, assumptions, criticism, and ignorance fading into the distance, leaving nothing but tyre tracks behind as they go. And I gently close the gate.
I write until my thoughts go quiet. Not everything I write makes it to public view. It’s not work, I don’t get paid, and I don’t wear a uniform (though my faded black hoodie and running pants make a regular appearance). I write because I have to. I’ve carried these stories inside for so long, adding chapters as life unfolded. Eventually, something had to give.
Without sounding too melodramatic, I worry that if I don’t write, something in me; my mind, heart, or soul, might not hold out much longer. So I begin tapping, hoping my fingers remember the keys.
I’m working on manuscripts that have been years in the making, projects left over from my university writing course, when I stopped writing to ‘work’. I'm writing poetry, fiction, nonfiction. And heaven help me if I need to explain this to those who ask, “What have you been doing today?”, and aren’t soothed by the answer “writing.”
Have you ever noticed how some people respond to discomfort with comparison? You say you’ve been writing, and suddenly they’re telling stories of someone busier, more troubled, tougher and somehow, you leave feeling like your day didn’t quite count, maybe you should have said “fine”?
“Compassion is the wish to see others free from suffering.”
— Thich Nhat Hanh
Some days I write for two hours. Others, half the day. Yesterday, it was a full stretch. I helped someone with errands, but only after writing from 3 a.m. to 10 a.m.,then finally, breakfast. For many, that’s a full day at the office. Still, it never seems to “measure up” to the idea of going to work. Writers don’t get weekends.
It took Bryce Courtenay about a year to write a book, often with the help of a researcher or assistant. Stephen King can produce a novel in 3 to 6 months. J.K. Rowling took 5 years to write Harry Potter and the Philosopher’s Stone. George R.R. Martin? Around 5 years for A Game of Thrones. Margaret Atwood spent roughly 18 months crafting The Handmaid’s Tale.
I often wonder: when does writing shift from being “just a hobby” to being what you do,regardless of whether your friends, family, or colleagues see it that way?
Do I think I have what it takes to write a masterpiece? Oh geez, no. I don’t even entertain the idea. I just know I have a billion stories to tell and no one to tell them to but the page. So I write. Pages and pages in between everything else.
Each morning, I start with a hot lemon tea. That small ritual helps keep me grounded, saving me from the urge to grab my own face and shout, “Focus, damn it!” I write until the words run dry.
I tried the Pomodoro Technique once, to ease the mental fatigue and rein in my easily distracted brain. But after the first 20 minute break, on the way to grab a glass of water, I not only lost my train of thought, I didn’t find my way back until the next day.
On the surface, I’ve been the queen of masking, only feeling the slip of my crown when I’m slightly intoxicated or emotionally overwhelmed. After a lifetime of carrying “hard,” it shouldn’t be surprising that even the smallest drip in a full cup can cause it to overflow, especially when I let my guard down in places I thought were safe. It isn’t a pretty sight, sometimes hilarious (if you still know how to laugh).
But when it spills, it’s not a gentle leak, it’s a dam bursting. And I often spend more time cleaning up the aftermath than learning how to protect myself when my executive function is impaired. How did I straighten my crown? I took it off. I put it down. And I no longer feel safe enough to enjoy a glass of wine with anyone. I don’t need it, never did. The mask is off, welcome to standing in my truth.
That’s the thing about judgment, it’s a stealth form of passive aggression. It hides beneath concern laced with assumptions. It doesn’t listen, hear or feel. It is never present in your hear and now. Judgement decides before you’ve even shared your story.
Judgment sneaks in when you’re vulnerable, doing your best, and knocks you off balance. One minute you’re sharing your truth; the next, you’re wondering what just happened. It blind sides you, leaving you with more mental overload than before the conversation started.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
— Leo Buscaglia
The truth is, some people do have big lives, bigger responsibilities, deeper struggles. But not everyone is served the same plate of “hard.” We are not all ‘in the same boat’. Some of us are swimming, others paddling, some in yachts with pools and chefs, some happily in a dingy pottering along. When someone reaches out for comfort and instead hears how someone else (usually a stranger) has it worse, the message is clear: your pain doesn’t matter here.
Presence is the key to easing another’s suffering. Validation doesn’t come from comparison; it comes from being truly with someone in their moment.
When you judge, you’re no longer present. You’re in your head, swimming in assumptions and distortions about someone else’s reality. But no one can truly know suffering except the person living through it. If you want learning, understanding, to grow compassionate, then it’s time to be present.
So I’ve started doing something different: I’ve stopped reaching out to those people. I don’t call anymore. I understand now, they may see my life as “always something,” and maybe it is too much for them. And that’s the point. It is too much, I know it, live it, breathe it, every day.
Judgment is never about the other person. It’s about the judger. It’s passive aggression disguised as concern. And it’s not just unhelpful, it’s harmful, hurtful, invalidating. It can be downright cruel.
Some people do face more worries, more tragedy, more suffering than others.
On the surface, it’s easy to piece together someone’s story like doing sums: Oh, you’ve only lost one child? They lost two.You’ve only got one brain disease? They’ve got something worse. As if pain were a competition.
“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.”
— Dalai Lama
There are days I wish I could cut the lesions out of my brain. I wish there were a treatment for MS that could kill the cells stripping the myelin from my nerves. But there isn’t. There’s no cure. And given the choice, I’d take almost any other illness over losing my mind. I like my mind. I’ve grown attached to my thoughts, my creativity, my quirky personality, even the impulsivity.
Sometimes I wonder who I’d be without MS. But I’ll never know. I not only don’t remember, I’ll never get to remember. There’s no going back. There’s no stopping it.
Last year, I hit my head hard. I lost consciousness after a blow to the face. A small dot later appeared on my brain stem on the scan. I’m not worried about it now. I’ve been learning to manage the vomiting, the headaches, the chronic insomnia (because it’s hard to sleep through headaches and vomiting which has no pattern to predict). It’s my battle. Some days I cope better than others. Some days not so bubbly and fluffy.
Some days I walk 8 to 10 kilometers, dragging my right side along, still not sure if it’s decided to join me. Other days, I debate whether to spend money on food I might not be able to keep down. Then, I get invalidated, simply because when someone asks how I am, I tell the truth.
So here’s the thing: if you're looking for someone to placate the toxic positivity culture, I’m not your person. If you're more comfortable with seaside views, cocktails at dusk, and laughter into the early hours, then I might need to excuse myself to the bathroom, say something brutally honest, or shut down mid conversation while trying to keep up with your gold, star version of what life should be.
Honestly, I’m tired of the cookie cutter pictures of life.
And to those who lean into judgment instead of compassion, listening, and patience: please, don’t become a counsellor.
Here’s something else worth knowing: what you say about others doesn’t reveal who they are, it reveals your story. If you’re judging me for my imperfect existence, I can’t help but feel concerned about what’s happening in your life that makes you need to judge, hurt, or assume so much.
Life is hard right now. Not a new hard, just a different kind.
If I could write uninterrupted, without overwhelm, stress, or the weight of managing an unpredictable neurological condition, who knows? Maybe those pages would become a screenplay, and someone else would be telling my story.
So ease up. When you criticise, judge, assume, or invalidate, you're not just throwing words into the air, you're tampering with someone’s potential. My potential.
Everyone’s version of hard is different. That doesn’t make it more or less valid, just unique to the person living it.
And one last thing:
The next time you read a book, watch a movie, see a play, or admire a piece of art, take a moment to consider what it took to create it. Your few hours of enjoyment came from someone else’s years of effort, emotion, and imagination.
Every story has its pages. Every page has its price.
You know how at the doctor’s office, you get 15 minutes to spill everything relevant before time runs out? Maybe, when catching up with a friend, striking up a conversation with a stranger, or making a call, don’t ask, “How are you?” unless you’re prepared to truly listen.
It’s that simple.
Yep, everyone's version of hard is different! Excellent essay! Accepting yourself as you are is wisdom, as wanting things to be different is at the core of suffering. 🤍🙏🏽☮️.