full heart

 The new year always arrives quietly. Not with answers, not with guarantees, but with a pause. A moment to look back before moving forward. And as I step into this new year, there is a lot I’m grateful for, opportunities, lessons, growth, but above everything else, I’m grateful for family.

Because without family, we would be lost.

And when I say family, I don’t mean one narrow definition. Family, to me, has grown and softened and expanded over time. It is my parents, who have loved me in ways I’ll only fully understand as I get older. It is my siblings, who know every version of me and love me anyway. It is my grandparents, whose lives carry stories, sacrifice, and strength that shaped everything I stand on.

It is my cousins, my aunts and uncles, the ones who feel like second parents, built in friends, and reminders of where I come from. It is my partner who chooses me daily. And it is my girls, the ones who have held me in between moments.

Family is not just blood.
It’s presence.
It’s consistency.
It’s love that shows up even when it’s inconvenient.

This year taught me that family becomes more important as life moves faster. As the world feels louder. As expectations grow heavier. Family becomes the place where you don’t have to explain yourself. Where you can rest. Where you are allowed to be human.

Without the love of family, in all its forms, life would feel unanchored. Achievements would feel hollow. Growth would feel lonely. Love would feel incomplete.

So at the end of this year, as one chapter closes and another begins, my intention is simple.

I want to stay grateful.

Grateful not just when things are good, but when things are hard. Grateful for the people who ground me. Grateful for the ones who remind me who I am when I forget. Grateful for laughter around tables, support in silence, and love that doesn’t need to be loud to be real.

visibility vs connection

 For a long time, I thought being visible meant being connected.

Posting regularly. Sharing thoughts. Letting people see pieces of my life, my opinions, my voice. It all felt like openness, like presence, like proof that I was there. But somewhere along the way, I realised visibility and connection aren’t the same thing at all.

Visibility is being seen.
Connection is being felt.

Visibility is numbers, reactions, views, quick acknowledgements that disappear as fast as they arrive. It’s people knowing of you. Connection is quieter. Slower. It lives in conversations that linger, in messages that don’t need an audience, in moments where you feel understood without having to explain everything.

You can be highly visible and still feel deeply alone.
And you can be barely seen and feel completely held.

I’ve noticed that visibility often asks something from me. It asks me to present, to curate, to make sense of myself in a way that translates quickly. Connection doesn’t rush me. It lets me be unfinished. It doesn’t need a clear point or a polished version of me.

When something is shared publicly, it becomes open to interpretation. People respond to what they project onto it, not always what I meant. Connection feels different. It’s mutual. It’s a back-and-forth. It’s someone meeting you where you actually are, not where you appear to be.

I don’t think visibility is bad. Sometimes it opens doors, creates opportunities, helps us find people we’d never meet otherwise. But I no longer confuse it with closeness.

Lately, I’ve been choosing fewer moments of being seen and more moments of being known. More private conversations. More presence without performance. More space for things that don’t need to be documented to be real.

Because being visible is loud.
But connection is what stays.

Dating with a chronic illness

4am thoughts.

Chronic illness. Less of a taboo now than it was back in the day, but how do you slip it in conversation when you’re dating. Sure, it’s not a topic of choice for every date but when you meet that person who could be more than a potential, how do you bring it up?

I suppose the initial stages of dating typically is about light conversation and discovering common interests. Introducing a serious topic like a chronic illness too early might feel overwhelming for both people. However, waiting too long could make it seem like you were hiding a significant part of your life.

Striking the right balance is key.

I actually told my partner about my brain disease on our second date. Six hours into bottomless drinking, I had lost all abilities of a filter. To my surprise, he didn’t back off or get scared. Instead, he sat and listened while I blabbered on (thanks alcohol!). This response, though appreciated, should ideally be the norm, but why is illness still a taboo?

I guess dating with a chronic illness involves navigating a complex emotional terrain. One which requires honesty, timing, and a supportive partner willing to understand and accommodate your needs.

The right partner will see beyond the illness and appreciate the unique perspective and strength it has given you. And maybe just one day, we can move towards a world where these discussions are no longer taboo, but a natural part of getting to know someone.

Dark Humour

 When COVID first hit, people started panicking understandably about health, risk, and what it means to live with uncertainty.

I just... added it to the list.

Because when you’ve been living with a rare brain disease, weird symptoms, and a morning routine that involves 42 tablets and a contraption that looks like a pepper grinder but for medication, uncertainty is kind of the vibe already.

That said, I had one big extra fear:
“WHAT IF I GET COVID?”
(And then: Wait, what if I already have it and it just hasn’t made its dramatic entrance yet?)

Cue spirals, hand sanitiser addiction, and me Googling ‘can brain fog get foggier?’.

To cope, I did what I always do when things get overwhelming:
I made jokes. A lot of them.

Not to make anyone feel weird or uncomfortable just to take the edge off. For me. And sometimes, for other people who aren’t quite sure what to say when I casually drop that I live with a neurological condition that has no cure, can cause speech loss, and sometimes makes me nap like I’m 400 years old.

Turns out, humour is a brilliant softener.
It bridges the space between “this is hard” and “I’m still here.”
Like:

• “The only thing more complicated than my immune system is my skincare routine.

It’s not about pretending it’s all fine.
It’s about letting a little light in, even on the hard days.
Because living with a condition that already has layers of isolation built in and then experiencing a global lockdown on top of that gets heavy. And laughter, for me, is a pressure release valve that doesn’t need explaining.

COVID made the world feel a little more fragile. It made everyone aware of their bodies in new ways. For those of us who already live that way, it just amplified the stakes.

And that even in the weirdness, especially in the weirdness there is room for joy. For warmth. For humour. For a really bad joke that makes someone smile when they least expect it.

So yes, I’ve got a brain disease. Yes, I'm living through a global pandemic with it.
And yes, I’m still cracking one-liners that even I sometimes regret mid-sentence.

But it helps.
And if it helps someone else feel a little less alone, that’s a win.

holding both

I don’t want to make my whole personality about having a brain disease.

I don’t want every conversation, every introduction, every version of me to be framed by it. I am more than what happened to my body. I have interests, dreams, humour, softness, ambition. I am not defined solely by illness.

But I also don’t want to forget it.

Because it is one of the biggest parts of me. Not in a way that takes over, but in a way that quietly shaped who I am. It changed how I think, how I feel, how I move through the world. Ignoring that would mean ignoring a version of myself that survived something life altering.

There’s a tension in holding both truths.

Wanting to move forward without being boxed in, while still honouring the experience that taught me so much. Wanting to be seen as whole, not fragile, but also not pretending nothing happened.

My illness didn’t give me my personality, but it refined it. It gave me depth. Perspective. Empathy. It made me more aware of how precious time and clarity are. Those things live in me now, whether I talk about them or not.

I don’t need my story to be the headline of who I am. But it deserves a place in the background, steady and acknowledged. Like a chapter that changed the direction of the book, even if it isn’t the entire plot.

I am allowed to be many things at once.

Someone who is moving on.
Someone who remembers.
Someone who is still becoming.

The break

We're living in testing times right now. From one day, to the next, we don't know what to expect when we turn on the TV. We're trying so hard to adjust to the "new normal" that is anything but normal, which leaves us feel, anxious, sad, frustrated and most of all, uncertain.

The world is completely unpredictable right now. None of us know what to expect when we turn on the news. It’s the first time in our recent history that anything like this has ever occurred, so many of us are feeling anxious, sad, frustrated, and a number of other things.

We are trying so hard to adjust to a new “normal” that is really anything but normal. Despite what the online world wants us to believe, not everyone is able to be creative and productive every single day while we trudge on through these weeks. There is a huge disconnection between each person stuck in their homes and the rest of the world. This is easily one of the loneliest and most stressful periods of time, so it’s no wonder so many people are feeling off. Can you think of any other period of your lifetime where life looked like it does now? Probably not.

We are anxious. We are sad. We are suspicious of being hopeful. We are irritable. We are stir crazy and we need to get out of our houses again. We are all over the place.

It’s not just you. We are all doing our best to handle this, even if it doesn’t feel like we are doing the greatest job at it. You are not alone, even though I know it sure feels lonely in isolation.

If there is one positive thing you can do for yourself, it is to be patient. If you are feeling out of touch, that’s okay. If you have been hot and cold or even snapped at someone you didn’t mean to, cut yourself some slack. If you are feeling sad and worried, well, it’s no wonder that you are.

We cannot expect yourself to be exactly who we were before this all started. Everything is different, including ourselves.

If there was ever a time to show ourselves some extra kindness, it’s right now.

We don’t have to be our usual, productive self. Handle this thing however we need to handle it so we can get through it. That’s the best thing any of us can do until we see the other side of this. 

Remind yourself that we will make it through, even if we can’t see the light at the end of the tunnel quite yet.

love

I love love. I always have.

Maybe it’s because I was born in the month that celebrates it. Or maybe it’s because love has always felt worth believing in, even when it’s imperfect, even when it’s quiet.

To me, love isn’t just romantic. It lives in friendships that feel easy, in family that grounds you, and in partners who choose you every day. It’s in showing up, listening, and staying.

I love love because it softens life. It makes ordinary moments feel meaningful and hard moments feel lighter. It reminds us that connection matters and that being open is a strength, not a weakness.

uni, completed it mate.

Finishing university feels surreal in the quietest way.

I went in as a quiet girl. The kind who observed more than she spoke. The kind who stayed comfortable in familiarity. No one from my girls’ school went to the city of Birmingham for uni, so in many ways, I arrived with a blank slate. No expectations. No history. No one who already knew who I was supposed to be.

And that turned out to be the biggest gift.

Moving to a new city gave me permission to step outside of myself. To try. To speak up. To sit next to strangers and let them slowly become friends. There was no safety net of people who’d known me for years, but there was freedom in that too.

University pushed me in ways I didn’t expect. Not loudly. Not dramatically. Just gently, over time. Through shared lectures, late conversations, group work, coffees, and moments of connection that didn’t feel forced. I learned that friendship doesn’t always come from confidence. Sometimes it comes from openness.

I didn’t suddenly become the loudest person in the room. I didn’t need to. I just became more myself.

Finishing uni now, I realise how much that chapter shaped me. Not just academically, but personally. It gave me independence. Perspective. And the confidence that I can walk into unfamiliar spaces and find my place.

Birmingham will always hold that version of me. The one who took a chance. The one who broke out of her shell, slowly and on her own terms.

And as I close this chapter, I’m proud. Not because I changed completely, but because I grew.

I won the prize for perseverance 3 years in a row

At my school, prize giving was a big deal. It was a tradition. Everyone gathered together, parents, teachers, students, from reception all the way to year 13. Names were read out on stage. Applause filled the room. Achievements were celebrated publicly.

There is one perseverance award for the entire school.

And I won it three years in a row.

I know why.

I know I didn’t win it because I was the most quietly resilient student, or because I had some hidden superpower. I won it because I had a brain disease. Because what I was dealing with was visible enough, serious enough, and hard enough to be recognised.

It’s strange to admit that.

It’s even stranger to sit in an audience year after year, knowing your name will be called again. Knowing the applause comes from sympathy as much as admiration. Knowing that perseverance, in this context, is inseparable from illness.

There’s something almost ironic about it. One prize. One student. Every year since my diagnosis. It became predictable. And yet, it never felt simple.

On the surface, it’s an honour. Perseverance is a powerful word. It means continuing when things are hard. It means not giving up. It means staying.

But it also quietly reinforces the reason you’re persevering in the first place.

By the third time, I understood it differently. I knew this would be the last time I could ever win it. Year 13 was the end. No more assemblies. No more prize giving. No more being publicly defined by the thing that changed my life.

And that brought mixed emotions.

Part of me felt proud. I did keep going. I showed up. I finished. That matters.

Another part of me felt tired of being known for surviving rather than simply being. Tired of having my effort framed through illness rather than ability. Tired of standing as “the one” example year after year.

Winning the perseverance prize three times taught me something unexpected. Perseverance isn’t about collecting recognition. It’s about continuing even when the recognition makes you uncomfortable. Even when it reminds you of things you didn’t choose.

I’ll never win that prize again. And strangely, that feels like closure.

Because perseverance doesn’t need a stage. It doesn’t need applause. It lives quietly in the choices you make every day to keep going, even when no one is watching.

And that part belongs to me, whether there’s a prize for it or not.